Less, more frequently. Keeping my glorious subscribers up to date on some changes.

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Summary600 blog posts and 250 podcast episodes in. I’m making a change. Production runs 50-60 hours per episode — unsustainable, even though I love every minute. In this trike-ride solo episode, I share what’s pulling my time: co-founding Trust My Own Health (a new startup, weekly one-screen newsletter ), co-leading an endometriosis series with Phee, and playing more baritone sax. The plan going forward: shorter, more frequent Health Hats episodes — 15-minute check-ins instead of long-form deep dives. Recorded live on a trike at 6:30 am, because that’s how I do things.

EpisodeOkay, hello. How you doing? I’m back on my trike. It’s like 65, supposed to be 90 today. Maybe it’s 6:30 in the morning. I’m wearing a long-sleeve shirt just ’cause it’s a little cool, but not too bad. Anyway, good to be out here with you. So let’s see, what am I thinking about? I’m thinking I’m gonna make a change to my podcast.

I thought I would take a moment with my most avid longtime followers. Thank you very much. ‘Cause I’ve been overwhelmed by my long-form podcasting.

It’s taking 50 to 60 hours to do an episode. It’s just ridiculous. Actually, I enjoy every minute, but it’s too many minutes. And so let me tell you why it’s too many minutes and what my plan is going forward. I’m co-founding a startup, Trust My Own Health. And I will include a link to that ’cause I would love for you all to learn about it and subscribe to yet another Danny thing, a weekly one-screen newsletter. But anyway, this is taking a lot of my time, and I’m really enjoying it. I feel like it’s actually a culmination of my whole career, my whole life in healthcare, and I really wanna put the time in it. We’re in the raising money stage. And I’m actually, for the first time, feeling like we can do this and we’re getting ready to do this, and I wanna put in the time. But I don’t wanna stop doing Health Hats, the podcast, ’cause I love it.

So I’m thinking about doing more frequent, like 15-minute things like this, just talking to you about life and health and what’s going on. And then meanwhile, What’s also happening is that I’ve been working with Phee, who is a person. with some very serious endometriosis. And over the past couple of years, my awareness of endometriosis has grown. Phee uses the pronouns they and him.

So Phee wants to tell their story, and it’s a great story. I suggested that they co-lead the series about it. We’ve met a few times on Zoom, and we’re in the process of inviting a couple of guests. I see this as a series that will come out when it comes out.

But I think I’m gonna– I think we are gonna put it out in half-hour bursts, just to go with the getting used to shorter, more frequent bursts. And actually, I’m spending a lot more time playing music, which I love. So again, it’s squeezing the podcast time, hence the change. I’m delighted to hear what you think of that, and you all have been with me through thick and thin for a lot of years.

So this is probably the 600th episode since I started the blog, and we’re at 250 for the podcast. So there you have it. We’ll see you later

Please comment and ask questions:

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Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk
Leon van Leeuwen: editing and site management
Oscar van Leeuwen: video editing
Julia Higgins: Digital marketing therapy
Steve Heatherington: Help Desk and podcast production counseling
Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection
Claude, Perplexity, Auphonic, Descript, Grammarly, DaVinci Resolve, DaVinci AI Art Generator, OpenArt AI Creator Studio

Inspired by and Grateful to: Steve Heatherington, Tania Marien, Heidi Frei, Jane Beddall, Matt Neil, Phee Marcial

Artificial Intelligence in Podcast Production

Health Hats, the Podcast, utilizes AI tools for production tasks such as editing, transcription, and content suggestions. While AI assists with various aspects, including image creation, most AI suggestions are modified. All creative decisions remain my own, with AI sources referenced as usual. Questions are welcome.

Creative Commons Licensing

CC BY-NC-SA

This license enables reusers to distribute, remix, adapt, and build upon the material in any medium or format for noncommercial purposes only, and only so long as attribution is given to the creator. If you remix, adapt, or build upon the material, you must license the modified material under identical terms. CC BY-NC-SA includes the following elements:

BY: credit must be given to the creator. NC: Only noncommercial uses of the work are permitted.

SA: Adaptations must be shared under the same terms.

Please let me know. dannyhealthhats@gmail.com Material on this site created by others is theirs, and use follows their guidelines.

Disclaimer

The views and opinions presented in this podcast and publication are solely my responsibility and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors, or Methodology Committee. Danny van Leeuwen (Health Hats)

The post I Love This So Much I Have to Do Less of It first appeared on Danny van Leeuwen Health Hats.

View Details

As a nurse with MS, I’m interviewed about AI’s real role in care: pattern recognition, human-in-the-loop skepticism, and the Three T’s and Two C’s framework.

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Click here for a verbatim transcript

Summary

I sit in the guest chair on Practical AI in Healthcare with Steve Labkoff. I walk through my experience feeding my own symptom logs, lab results, and ten years of clinician notes into an AI LLM: a physical therapy referral I needed and hadn’t scheduled, a medication side effect my neurologist later confirmed, and a rating scale buried in my chart that no one had surfaced. I describe the less impressive side: the four-pound box of unsorted paper my primary care practice mailed me and the 296 pages of unsearchable PDFs I got back from another system in fifteen minutes. Along the way, I lay out my framework for judging any digital health tool, the Three T’s and Two C’s: time, trust, talk, control, and connection, and explain why I insist on keeping humans in the loop even though the research on that is more complicated than people assume. This isn’t a pitch for AI in healthcare. It’s a working nurse and patient’s honest field report. What’s your experience been feeding your own health data into an AI LLM? Tell us in the comments.

Episode Transcript

ProemI usually ask the questions. This time I’m the guest.

I met Drs. Steve Labkoff and Leon Rozenblit a couple of years ago at a DCI Network conference. They host Practical AI in Healthcare, a show I’ve listened to steadily, though it creates more tension for me than any other podcast I keep coming back to. Usually, I jettison podcasts that do that. I stay with this one because I approach AI in healthcare the way I approach best health; I’m an N of one and resist generalizing, while most guests do a fair amount of it. I bristle at most of them, wanting the shades of gray that reflect deep understanding. In four of 33 episodes, the guest has had lived experience: ePatient Dave DeBronkart, Amy Price, Hugo Campos, and me.

I invited Steve and Leon to join my virtual Reckoning group, which I’ve hosted since 2019. We give podcasters warm critiques of selected episodes: the kind of feedback you give when you’ve made a hundred mistakes yourself, can spot them quickly in someone else’s cut, and have endless thoughts about production, audience, dissemination, and life. They took the critique well. When Steve later asked me to come on his show to talk about how I use AI, not the theory but the daily grind, I readily agreed. They let me publish it here unchanged, apart from this Proem and Reflection.

I struggled to prepare for this conversation. I wanted to wear all my hats, but had to narrow my focus to two. I chose my lived experience and nurse hats.

Underneath it all was the question I keep circling back to. Not a cure. Best health, the most function, and

Hello, and welcome to this week’s edition of Practical AI in Healthcare. My name is Dr. Steven Lapcoff, and this week I’m actually on my own because my partner, Dr. Leon Rosenblatt, is actually on spring break with his kids, so I am covering for him and he’ll be back in the next week. This week we have a guest who we met at a conference in Boston a few months ago at the Beth Israel at the DCI network.

Steven Labkoff: We have Danny van Leeuwen. Danny is a nurse. He has background in giving actual physical care to patients. He actually runs his own podcast called Health Hats, the Podcast, and he’s been using AI in both his personal life and in his professional life very extensively. Also, Danny has a significant medical condition, and I’ll let him explain that in the course of the discussion because it’s with that lens that we got introduced at our patient-centric AI conference, and that’s why we thought it’d be a good idea to have Danny come and have a chat with us.

So welcome to the podcast, Danny. How are you today?

Health Hats: I’m good. Thank you. Thanks for having me. I appreciate it.

Steven Labkoff: So Danny, as you probably have heard because you’ve helped us with our podcast, and for that I want to say thank you. For those who are listening in, Danny runs actually a group that actually helps folks running podcasts improve their podcasts, and he’s had Leon and I on many times to listen to critiques and feedback, and it’s been very, very helpful.

Danny, we often start our podcast with asking for folks’ origin stories, like how did they get their cape and their superhero tights. What did you do to get you to this point in your life? And just tell us the background of what brought you here.

Health Hats: Oh, thanks. So I’m a child of Holocaust survivors, and my parents– when I was young, my parents were active in the civil rights and fair housing movement in the ’60s.

And when I was 16 and I was thinking about the war in Vietnam and worried about getting drafted, I wanted to learn what I could learn about the draft and how I could protect myself and manage. And I went to a church in downtown Detroit, and I went for a session of draft counseling as, you know, a little precocious at 16, and I found it fascinating, and they found me fascinating, and they encouraged me to become a draft counselor.

And so I, uh, I actually took their course and became a draft counselor, and what I learned is that you change systems from the inside, not the outside. And I learned how the sausage was made, and that, uh, really pointed me in a direction. The way I got into nursing is really because I didn’t want to cut my hair I had an opportunity for a job at one point, and I could have read water meters or become an aide at the Detroit Psychiatric Institute.

And reading water meters paid more, but I didn’t wanna cut my hair, so I got the job as, as nurse’s aide. And while I was there, they introduced me to the idea of going to nursing school, which was amazing.

Steven Labkoff: It was more– You got paid more to read meters, water meters, than you did-

Health Hats: Yes.

Steven Labkoff: That’s unbelievable. Life gives you some real interesting turns and twists, doesn’t it?

Health Hats: It does. And I was really fortunate because my first jobs in nursing were in physical rehabilitation and home care. I just happened to be in a place where the Holyoke Visiting Nurses was dying to hire a guy, and I was a brand-new nurse, and they ended up hiring me. And so my first introduction to nursing was not in acute care.

It was in home care, and actually, I was the first male public health nurse in Western Massachusetts in 1976. And really, what I learned there was that most healthcare does not occur in the medical system. It occurs outside the medical system. And so when I ended up getting into medical care, it was always so interesting to me that everybody there thought this is where, you know, health happened, which it doesn’t.

So over the 20 years of working as a nurse, I’ve worked in, other than the rehab and home care, I’ve worked in the emergency department, I’ve worked in ICU, I worked in pediatrics, behavioral health. And after about 15, 20 years, I shifted from becoming a student of individual health to a student o- of organizational health.

And what I mean by that is I got into performance improvement. I led a couple of electronic health record implementations. I had a couple of gigs in the C-suite. I did some consulting. Now, in 2009, I was diagnosed with multiple sclerosis, and when I was diagnosed, I learned that I had had it for 25 years.

And since my father died young, he died at 45 when I was 19 of his second heart attack, and so every time I would have some kind of episode, I would get a cardiac workup. And by the time the cardiac workup was done, you know, the episode was over, and this went on two, three, four times a year for a long time.

And there was a pattern there, and nobody was connecting the dots for 25 years. That’s very important to me because the pattern of what was going on was in my records for 25 years, but nobody had synthesized it.

Steven Labkoff: Yeah, they may have been biased, right? Because of your family history and having these episodes, you know, as a clinician, you get very biased by family history, and that can actually lead you down roads which may not be correct, and it sounds like that’s precisely what happened with you.

Health Hats: So I’ve– I wanna bring in the caregiver role because I have been a caregiver for my grandmother, my mother, and a son in their end-of-life journeys. So I’ve been on many sides of very difficult decisions. As you said, that my shtick is health hats, and I’m health hats because I’m a patient, I’m a caregiver, I’m a nurse, I’m an advocate, I’m an informaticist, I’m a podcast host.

I wear a lot of hats. And wearing many hats has gotten me a seat at many tables because they can check off boxes. When it was really different to be bringing patients o-on board, I was an easy choice. Uh, I was at the table for technical expert panels at CMS, at National Academy of Medicine, at AHRQ, National Quality Forum, PCORI, Patient-Centered Outcomes Research Institute.

But really, I wasn’t really there in it for the seat itself. My goal was always to open seats for people who weren’t there yet Now let’s build the bridge, since this is a podcast about AI, let’s build that little bit of that bridge. So my first, like, serious experience with– Well, I don’t know about my first.

I was involved in something that you probably are familiar with, which was the Blue Button Plus program, and my goal in that, I was there both as a patient and as somebody who was working with people with disabilities. I, I was VP of quality for an organization that supported about 40,000 people with disabilities.

And my goal for that couple of years of weekly or every other week, I can’t remember, calls was, uh, to add a f- a caregiver field to the data set, and to also introduce the idea that what people needed was information that would be able to say what works for me when I’m in pain and what works for me when I’m afraid, which was an issue for me, and it was an issue for the organization that I was working with at the time.

Now, I have to say that the caregiver field got added, so I felt some success in that. But as a nurse leader in the informatics group I was part of, really they were only interested in putting a name in the field, not doing anything with that information, which

I- Just collecting, so just collecting the data.

Steven Labkoff: They didn’t care what the data was used for? Is that what you’re saying?

Health Hats: Correct. Yeah. And I couldn’t– got no traction on the pain and fear, which now that I’m older, I understand why, how difficult that is. Nevertheless, it’s something that’s important to patients and caregivers. So I think I would close this section with that I am both an early adopter of technology and a rapid skeptic, that I’m kinda making this number up, but I’ve probably tried over 100 health apps, and I would say that I’ve used five more than three times.

And so I think there’s a gap between what’s promised with digital technology and what’s useful for people. So that’s really why I’m here and what’s guiding for me in this.

Steven Labkoff: So let’s take it to the next step. In our prequel, I didn’t even know about your personal background to that degree. Mm-hmm. We can take that one offline later about the Holocaust survivor issues.

We, we have family, I have family in that same situation, frankly. Let’s change gears and talk about the challenges that you’ve seen. You opened the door a little bit on that a few minutes ago- Yeah … in terms of people wanting to collect data but not necessarily doing much with the data, not being able to understand the true value of the data to some degree.

And you said it yourself, people weren’t connecting the dots.

Medical records have always been complicated. They’ve always been bulky. They’ve always been full of information, some of which is really relevant, a lot of which is not so relevant, and connecting the dots to making that a, uh, an important information source is not always an obvious task.

So what, what was the particular angle on that challenge that you were trying to gun at?

Health Hats: Well, I think we have to take a step back-

and think about what is– Well, I’m just gonna speak for myself, okay? I know that I often, you know, as I said, I get asked to sit at the table because people can, you know, check boxes, like is that I’m a patient.

I wanna be clear that I’m a privileged white old man with MS living in Boston, but I’m an N of one, and I don’t represent other patients. I’m representing myself here and my perspectives. My goal in terms of my health is best health, and what I mean by best health is optimal health and function, physical, mental, spiritual.

Not a cure, but best health for where I am, what I have right now. And to get there, I need my own health data, not just what’s in my clinician’s chart, but what I know about myself, my circumstances, my environment, my history, my habits. Not just my medical history, my life history, my treatment responses. And so that’s like patient-reported data, and that’s stuff that’s only exists because I observe it and sometimes I record it And that’s where it falls apart right away.

You were just alluding to some of it, that there’s all this medical data and what’s useful about that. I think Dave DeBronkart was a guest on your show. And when he launched his Gimme My Damn Data campaign, I responded to him with, “Watch what you wish for. You’ll be trying to drink dirty water from a fire hose.”

And, and that was years ago, and it’s still true. So six months ago, I, I’d been on a mission to gather my medical data, and my– I’d been with my, uh, primary care practice since 2011, and I wanted all that data from 2011 to 2025. This was, like, in December I started on this crusade of trying to get my data.

And actually, two months later, I got a box, a four-pound box of paper, and it was paper that was not in chronological order. And it’s just sitting right here. I’ve scanned it in. It’s not, um- Was it in–

Steven Labkoff: Was it a printout of Epic or something, or was it actual-

Health Hats: It’s a computer printout. It seems like it’s a vendor that they use to-

Steven Labkoff: It wasn’t digital. They sent you, literally sent you a box of paper.

Health Hats: Yeah, it was a box of paper. Oh. And then I use a lot the, the Beth Israel Lahey Mount Auburn system, and I asked for the last three months of my records, and I got 296 pages of redundant, non-searchable PDFs, and I got that in 15 minutes. Uh, I see a lot of doctors, so maybe I had seen Hmm.

I think I had maybe eight or nine visits, and it just happened to be a three-month period that was busy for me, but I got s- 296 pages. And so that really adds to your comment, which is that access to data and access to usable data are really different.

Steven Labkoff: Oh, absolutely. And yeah, I’ll tell you, in my world, I think you know that I’ve worked in the life sciences for many, many years, and we are consumers of healthcare data on many levels.

We consume medical claims, we consume electronic medical records, and one of the hardest things about using medical records for research or for outcome studies and things like that is the very fact you’re describing, which is the data tends to be sparse, it tends to be poorly organized. It doesn’t always come in an encoded fashion.

Thank God most of what we get these days is at least digital. No boxes of paper for us these days, but it wasn’t so long ago that when it was all paper, we couldn’t get that data in the first place. It just wasn’t even gettable. So at least you’ve made some progress. And- Yeah … yeah, I know that you sit on some national level boards, uh, around outcomes, and you can talk about that in a moment.

But those are, you know, those boards are trying very hard to come up with outcome studies and ways of– Let me back that up. They’re coming up with ways of using data to perform outcome studies by harmonizing and, and distilling down to usable forms of this EHR data, which is so challenging.

Health Hats: I think what’s key, I– like I, I think I w- I’d like to focus on my data.

And so what I wanna do is I wanna see patterns. I wanna see patterns that takes my circumstances, my environment, my habits, my treatment over time, and because I think that these patterns are how I formulate the right questions, so the right questions before I go into a clinical encounter. They’re how I track when something is actually working, and it helps me to coordinate across care teams that don’t talk to each other and make decisions that I can live with that help me attain this goal of best health.

So that’s the job, formulate better questions, g- seek better answers, make better decisions. And AI is the tool that I try to use to do it. Now, whether it’s up to the task or not is different. I wanna stick in the nursing angle, if you don’t mind-

You know, one of the things that I learned the way I got started in nursing is that my goal as a nurse was to put myself out of a job.

Steven Labkoff: So that sounds counterintuitive, but what I mean is from minute one with a patient and family, I’m planning my exit. Like, and to do that, I need maximum face time. I need real present, real conversation, real relationships, not less charting. I was gonna say not charting, not documentation, so that’s just ridiculous.

Health Hats: But less, you know. The way you do that, I think, is, you know, less charting, less documentation, you know, not hunting through information you can’t find. And that’s where nursing, that’s a genuine promise. So pattern recognition across specific cohorts of patients. So as a nurse, even though I worked a lot of different places, in each place I worked, there was commonalities.

In– When I lived in West Virginia and I was an ER nurse in a super rural hospital, if I had had more information about my patients, their families, I could get– an AI could help me surface those patterns that exist for the people that I’m taking care of, I think I could get time back as a nurse. And if the nurse gets time back, then the patient and family gets the presence of the clinician.

So that’s the trade that I’m interested in I wanna go back to that thing about pain and fear. I wanna add what I’ve learned working on the blue button, plus I wanna add cognition.

So when you think about it, the data almost never captures the variability of pain, fear, and cognition, and those things are really important because pain changes what you can do and what you can decide.

Fear closes your heart. It closes your mind. And so when you’re scared in a clinical encounter, you’re not making good decisions. You’re just saying yes to end it. And cognition is, you know, it varies. Like I can absorb better at 10 in the morning on a good day compared to 3:00 in the afternoon when I’m spent.

You know, you could extrapolate this to other people. They have their own particular patterns and circumstances. But I think What I’m trying to get at in all of this is it isn’t first about the data, it’s first about what about life and what about the things that are important to people, uh, patients, caregivers, and the clinicians that they partner with, and how can AI help them?

Steven Labkoff: So you’ve explained to me in the pre-call that you’re doing some of this work, so maybe you can unpack a little bit about what it is you’re actually doing with it and how it’s helping or, in some cases, not helping those efforts.

Health Hats: Well, what have I done? I, I’ve done different things. One of the things that, that I’ve done is to try to build my toolkit. You know? So when I say build my toolkit, I’m a, I’m a, a conglomeration of symptoms. I mean, you know, I’m, I’m not MS, I’m not my symptoms, but they’re big and they’re there, and I feel like I’m trying to, I’m trying to figure out for anything that I have to deal with, whether it’s any of the different kinds of pains I have, my, my anxiety, my bladder, you know, my mobility, I have challenges, and I, I need a toolbox.

I need a toolbox, and the way I think is I need at least three things that will work so that when they happen, I got something I can go do, and pretty much the most common thing is drink water. Drink water is by far the most successful intervention across all of my symptoms. It’s kind of amazing. It’s so cheap, so easy.

It isn’t the drugs. Okay, but so how do I do that? Well, for me, I’ve done that partially just in my head. Partially I’ve done that by keeping lists. Like, I keep track of the steps I take. I keep track of the amount of time I play music. I keep track of my falls. I keep track of my weight. And so I use digital tools to do that when I can.

Steven Labkoff: I also record my clinician visits because- When you say record, do you mean like audio record or dig-

Health Hats: Yeah. Yeah, audio record, right. And, uh, until recently I used Abridge, which is a company that, um-

Steven Labkoff: How did you get to use Abridge? You– I thought Abridge was only selling basically into doctor’s offices, uh, from the clinician side.

Do you-

Health Hats: So I was before that. Ah. And they started as a patient-facing product, and actually they sponsored my podcast for three years. So I was pre that.

So putting all that together, so I play with, you know, trying to put into Claude There’s nothing magic or special. You know, it’s me playing, just trying stuff.

You know, some of it, you know, my wife will say, “Hey,” she sees a pattern. My kids will see a pattern, or I’ll-

Steven Labkoff: Give, give, give us an example of what, of what this looks like. I mean, you’re saying you’re giving Claude or another LLM- Yeah … a series of symptoms, or you’re giving it a series of, plus your data. Like, unpack it and let us know.

Yeah. What have you did- Okay, so what- … with the system, and how is it working for you?

Health Hats: I’ve done a couple of different things. One is, you know, I have a spreadsheet, and I just put the spreadsheet in, you know, as a document or whatever you call it when you have a project and, you know, you load. I load my spreadsheet.

I keep a annual summary, and I keep the year that I’m working on. And I will have fits of journaling. You know, I, this is not something that I am, like, super consistent on, but I’ll, especially when I’m struggling with something, if I’m struggling with my blood pressure or I’m struggling with my mood. I have a progressive mobility thing going on, and I’ll put that in and I’ll prompt.

I’ll say, “Can you– do you see a pattern in this?” You know, and I’ve gotten, you know,

that there’s-

Steven Labkoff: Has it given you some insights? Is it… Like, give me an example of some of the insights it’s actually given you that you didn’t see yourself.

Health Hats: Well, I’ve gotten, like, uh, it’s kind of humorous. But, but I’ve gotten, like, you know, “Have you thought about seeing a physical therapist?”

And I, I have. You know, I have a physical therapist, uh, that I don’t go to very often. You know, my relationship with her is I go for a tune-up. But they’ll– I, I want– It’ll show, like, I’ll do my sort of things are clearly, you know, I’m not walking as far, I’ve fell on a few times, you know, and I’ll get this suggestion, you know.

I also– What else have I done? Oh, oh, uh, once I had a medication

that I was taking for neuropathy, and I was– my mood had, like, changed considerably and, you know, I got a thing on that might be a side effect. You know, “Have you talked to your doctor about this?”

Steven Labkoff: And I- And you got that out of the LLM? You fed that to the LLM?

Health Hats: I did. Yeah.

Steven Labkoff: And it suggested it was a side effect, which you didn’t figure out.

Health Hats: I didn’t. A neurologist said that he thought– He said, “It sounds like you have an allergy to it.” And, you know, he wanted it to be listed as an allergy because he thought it was very possible that he’s had people that have had a problem.

Steven Labkoff: When you tell me that you’ve loaded your data, you give the LLM your signs, your symptoms, you give it your labs, you give it what’s in, in the system, and it comes up with a recommendation that you hadn’t thought– Now, you’re a clinician. You’re a nurse. Yeah. You’ve been a nurse for many, many decades.

Health Hats: 50 years.

Steven Labkoff: 50 years. And does it surprise you that it comes up with stuff that you didn’t see?

Health Hats: No.

Steven Labkoff: Cause I, to be honest with you- I- … if I, if I did what you just said and it came up with something completely radical that I’d never thought of and it was right-

I would be scratching my head and thinking, “Okay, that’s in- that’s beyond interesting.

I better pay more attention to this, and maybe I wanna use it differently.” Because not, it’s not just yous using it. Like, people around everywhere are starting to use it for the same, in the same sim- in the same exact way. So that’s the simplification of the medical system, right?

Health Hats: It does. I mean, like when I tell my neurologist, he laughs, and he’s like a whatever works kinda guy, you know?

That he feels like he doesn’t have all the answers, and that he likes- those stories. I feel like I’ve learned, I think you know Amy Price, right?

Steven Labkoff: Yeah, very well.

Health Hats: Yeah. We’re buddies. And so one of the things that I’ve learned from her is how to query and how to be skeptical and how to ask questions from different angles, from different perspectives so that you– And that’s why I think that’s where the unexpected comes up.

Steven Labkoff: Well, you’re describing something that we did at the conference. I don’t know if you were in the room in the working group that we did this on, but you’re describing, and actually we’re submitting a paper on it very shortly, on AI literacy. Yeah. And you, you didn’t label it as such, but you’re describing yourself as being AI literate and understanding how to use the tools, most importantly, how to be skeptical of the answers, how to interpret the information that’s being presented to you.

Health Hats: A- and that, those are all components of literacy, of AI literacy specifically. One of the things I’m finding in my world is that painfully few people are indeed AI literate. Even the folks in IT departments in large life science companies or hospitals who even work in the space and think that they’re good at it and are literate sometimes are not.

That has other implications, which are if people are taking on these really impressively powerful tools and they don’t quite know how to use them as well as they should, and if they query them incorrectly, to your point earlier about making good queries, the responses that come out may or may not be the point.

And if patients use that information inappropriately because they didn’t know how to ask the right questions to start with, that could have deep implications to the healthcare system.

You could say that same thing about doctors.

Steven Labkoff: I will say it about doctors. I

mean, not about AI, about the advice that doctors give.

Health Hats: There’s a, a tremendous variation, and it is very different. When I am feeling good enough to be organized and to be directive in the conversation with a clinician, I get a very different output than when I’m not. And I still have to be skeptical of what doctors tell me, and until I build some trust. And, and then I, you know, then there’s just too many decisions to make when you’re a person with chronic illness.

It’s like putting in a kitchen. There’s so many decisions to make, and I’m happy for the doctors that I trust to make the decisions for me. But there are certain decisions I don’t want to give to the doctor or to AI, like I don’t wanna mess with my pathological optimism. I wanna progress as slowly as possible, and I wanna keep playing my horn.

These are really important things to me, and I don’t give those decisions that affect that, I don’t give up.

But all the rest of it I do, and, and I’ve worked really hard to build the team that I have that appreciates me and my strangeness and my assertiveness, and, you know, they’re not threatened by it.

Steven Labkoff: Is your team AI literate? Do they also use the, these same tools in your care?

Health Hats: Uh, like I don’t know. I mean, AI literate is like, is huge. You know? I mean, that’s just such a big thing. Do they use AI? Yes. Do I know how they use AI? Well, you know, they use what’s attached to Epic. I know that. Uh, I mean, look, my neurologist, who I just love, he thinks like he uses, he uses the portal well because he takes– he just keeps adding things to the end of the, a note.

Yeah. And so he feels like… Well, I don’t find his notes at all useful, and I tell him that. I tell him, “What I really wanna know is, how am I doing? Am I getting better? Am I getting worse? Am I stable? What should I be paying attention to in the next six months till I see you again?” And I can’t find that in his note.

That’s true. Yeah. Now, on the other hand, I’ve taken his note and asked Claude and say, “Here’s the note. How am I doing? You know, have I progressed? H-how is he measuring it?” Oh, well, then I find he’s using this scale, right? And it’ll come up with looking through this note, which is like 10 years running, and it’ll find, I can’t remember the name of it, but there’s a scale that he uses.

And then we go back and I’ll say to him, “Oh, you’re using this scale.” And he goes, “Yeah.” And I say, “Well, why don’t you like put that at the top of your note?” You know, so that I can find it. You know, so we have that kind of conversation- Yeah … that AI has helped.

Steven Labkoff: Well, that’s actually an interesting perspective that AI is helping to reorganize things, ’cause one of the use cases that has been discussed at, at length actually, and it was discussed at our conference, is using AI to digest medical records.

Health Hats: And when I say digest, it’s not about like ingesting them, which is slightly different, but digesting, which means find all the different pieces, put them together, come up with a narrative that summarizes perhaps 300 pages of information which may be sparse and may be poorly organized, and bring it all together.

And that’s actually a task that AI is actually turning out to be pretty darn good at. And that again changes the nature of the healthcare system and the healthcare journey. You know-

And it does a fair job. You say it’s really good at it. So- It’s

better than I could do. It’s better than I could do. Well,

yes.

Well, you’re not– First of all, that’s not your training, and you don’t have the time for it. And you still have to review it.

Yeah, of course.

Because I have never used AI that gave me a, “Oh, this is great.” I mean, the first time I read it pretty much every time I think it’s amazing. And then, you know, my rule is sleep on it and check it again.

And then it’s like, oh my God, this, first of all, it either just said nothing very fancy or it got some very basic things wrong. And then I’ll say, “Oh, you know, you missed this and you missed that.” And it’ll go, “Oh, you’re right, I did.” You know?

Steven Labkoff: Well, that also speaks to the concept of keeping a human in the loop- Yeah

which is something that you espouse and many folks in the healthcare aisle- I do … espouse. Ironically, you know Adam Rodman, I think. He was at our conference, he spoke. Yeah. Uh, he’s done a study which shows actually having a human in the loop in some cases actually makes the conclusions worse, believe it or not.

Ah.

Which is w- a non-intuitive finding. You would think that the two together would be better than either one alone, but so that’s, that’s now relatively n- well, it’s not even that new anymore. That information came out about a year ago. So I, we gotta start wrapping up in a few minutes here. Yeah. You know, we didn’t cover the concept around outcomes around your three T’s and two C’s.

Maybe we can cover that in the last bit here, and then we can get to closing.

Health Hats: Okay. So I feel like one of the questions that you’ve asked is how AI helped, right? And so what I need to tell you is the framework that I’ve developed over the years, which I’ve actually shared in my AI Claude project that’s Danny’s Health, what I call the three T’s and the two C’s, and this is like the framework I use to evaluate any digital health technology.

And so they are time, trust, talk, control, and connection. What I mean by that is time is, you know, you need time to learn, to plan, to talk, to build trust. So I say the clock isn’t the enemy, it’s the, the wrong things filling the time, so the, the time. The second is trust. You know, trust can take a really long time.

It can happen really quickly. Sometimes you never have it, and you know in your gut when you don’t have it. And most digital health tools, AI, have a trust deficit, I think, not because they’re untru- untrustworthy, which maybe they are, but it’s really because the people who use them, use the tools, don’t, don’t trust them, and I think it’s really important.

You c- you can’t shortcut trust in the use of any tool. I think talk is really important. It’s woven through all of it, real conversation. There is nothing like actual conversation that is making decisions together, which is a lot of what healthcare is about, is making decisions. AI can help you prepare for it, and it can help process it.

And then control. I trust more when I have power in a situation. So if I’m feeling like an ant ready to be crushed, I’m not making good decisions. And finally, I would say connection is, it’s the human lifeline. You know, when somebody greets you when you cross a threshold, that’s a connection. When someone’s been where you’re going and they can say, “Oh, that helped me.”

AI can extend that connection. They can help people find communities that are available at 3:00 in the morning, but you can’t manufacture it. I, I think that connection is really important, so that’s where I g- you know, time, talk, trust, control, and connection, and I use that framework when I’m evaluating.

Steven Labkoff: And that framework gives you a better, you know, a how do I say this right? It gives you a, like a rubric, if you will, to go- Yes … through, uh, the information that’s coming out of it. Danny- Yeah … we’re gonna have to wrap up here in a second. Sure. Are there any last comments you wanna make that, that will, you know, help other patients in the, in the space in terms of how they might wanna think about adopting- an AI tool in their world?

Health Hats: I think that I would say use it, use AI, keep using it, experiment with it. That, that i- i- just like anything else, it takes time to learn. It takes time to be comfortable with it. Use it. I would say advocate for humans in the loop. I don’t care what the study says. It’s about humans.

We are human. Keep it humans in the loop. I would say find a buddy, you know. Do this with somebody else. Find a buddy- That’s good advice … and experiment. I would say, yeah, talk to your clinician about it. It’s a good barometer of a physician. If they don’t wanna talk or blow you off, that tells you something.

Absolutely right.

And I would say if you’re comfortable with it, mentor. You know- That’s a good idea …

be the buddy. And for clinicians and for systems and developers, I would say you need to have patients, caregivers, and practicing partner clinicians in the design. They need to be there from the beginning.

And, you know, so i- it solves the problems people have, not the problems that the developers think are there or the venture capitalists thinks are gonna make money. You know, y- and if you have an opportunity, join, you know, participate.

Steven Labkoff: All good advice. Well, Danny, I wanna thank you very much for your participation in, in today’s discussion.

Hopefully that there are other patients out there who listen to the podcast, they’ll take something away. For the clinicians out there who are listening, you know, you’ve heard it straight out from a patient who happens to be a healthcare provider himself, and he’s got very strong perspectives on how this can be used in a positive and productive way, and I think the framework that he’s put together is very useful.

Danny, I wanna just say thank you for all the help that you’ve provided helping this podcast get off the ground. That’s been really incredibly generous of you and your friends who have helped us a lot, and a lot of the things that have happened on our podcast, uh, for improvement’s sake, have come directly from those conversations, so thank you for that.

I wanna thank you for being a guest and sharing your journey and sharing your experiences here. And for the rest of us, I’m gonna say thank you for joining us, and we will see you again next time on another episode of Practical AI in Healthcare. Thank you for listening. Thank you for joining us this week on Practical AI in Healthcare.

If you’re ready to go beyond buzzwords and hype and explore how AI is truly transforming healthcare, stay tuned for more conversations that get us to what works. Until next time, stay practical

ReflectionWhen Steve interviewed me, he didn’t know that everything I told him is the origin story of TrustMyOwn.Health. The box of paper. The 296 pages that were technically my data and practically useless. Twenty-five years of a pattern that sat in my chart the whole time, that it took a person, my PCP, a year to put together. Could AI have done it in an afternoon? I got tired of that being the normal experience instead of the exception. [Add: what specifically prompted starting TMOH, and when.]

TMOH starts from a premise I didn’t have language for until I said it out loud to Steve: trust isn’t a feature you bolt onto a health platform after the engineering is done. It’s the whole structure, or the whole thing fails.

The three T’s and two C’s I use to size up any digital health tool turn out to be close to a design spec. Time, because a vault of your whole health history takes patience to build, not a single import. Trust, built into governance rather than promised in marketing; TMOH’s Data Sovereignty Covenant binds the board and investors to the same terms as everyone else, which is the only version of trust I believe in. Talk, because the point was never to replace the conversation with my clinician, it was to walk in more prepared for it. Control, because I decide what goes in the vault and who sees it, the same way I decide which of my own decisions I hand to a doctor or an AI and which ones I keep for myself. Connection, which no vault can manufacture, but a good one can make room for.

I told Steve that AI found a pattern in my chart that twenty-five years of clinicians missed. That’s not really a story about AI being smart. It’s a story about who owned the data long enough to ask the question. That’s the whole bet behind TMOH: put the owner at the center, and let the rest of the ecosystem, the networks, the vendors, the AI, earn its place around that.

See you around the block.

Practical AI in Healthcare EpisodesReferenced in episode

Patient data access history: “Introducing Blue Button Plus: The Next Generation in PHRs” — HealthIT.gov (Office of the National Coordinator for Health IT) — https://www.healthit.gov/blog/consumer/introducing-blue-button/

The “Gimme My Damn Data” campaign Danny references: “Gimme My Damn Data (and Let Patients Help!): The #GimmeMyDamnData Manifesto” — Dave deBronkart, Journal of Medical Internet Research — https://www.jmir.org/2019/11/e17045/

Amy Price, mentioned as a mentor in questioning and skepticism: “Welcoming Dr. Amy Price as Editor-in-Chief” — Society for Participatory Medicine — https://participatorymedicine.org/2024/welcoming-dr-amy-price-dphil-as-the-editor-in-chief-for-the-journal-of-participatory-medicine/

AI literacy for patients, the concept Steve names in the episode: “Critical AI Health Literacy as Liberation Technology: A New Skill for Patient Empowerment” — National Academy of Medicine — https://nam.edu/perspectives/critical-ai-health-literacy-as-liberation-technology-a-new-skill-for-patient-empowerment/

Human-in-the-loop research Danny and Steve discuss (Adam Rodman): “AI and the Evolution of Medical Thought with Dr. Adam Rodman” — NEJM AI Grand Rounds (podcast) — https://ai-podcast.nejm.org/e/ai-and-the-evolution-of-medical-thought-with-dr-adam-rodman/

Abridge, the ambient AI scribe tool Danny mentions using: “Pioneers in Generative AI for Healthcare” — Abridge — https://www.abridge.com/about

The DCI Network conference where Danny met the hosts: “About DCI Network” — DCI Network, Beth Israel Deaconess Medical Center — https://www.dcinetwork.org/about-us

Please comment and ask questions:

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, TikTok to @healthhats
Substack
Patreon

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk
Leon van Leeuwen: editing and site management
Oscar van Leeuwen: video editing
Julia Higgins: Digital marketing therapy
Steve Heatherington: Help Desk and podcast production counseling
Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection
Claude, Perplexity, Auphonic, Descript, Grammarly, DaVinci Resolve, DaVinci AI Art Generator, OpenArt AI Creator Studio

Inspired by and Grateful to: Steve Labkoff, Leon Rosenbilt, Amy Price, Leon and Oscar van Leeuwen, Laura Marcial

Artificial Intelligence in Podcast Production

Creative Commons Licensing

CC BY-NC-SA

BY: credit must be given to the creator. NC: Only noncommercial uses of the work are permitted.

SA: Adaptations must be shared under the same terms.

Please let me know. dannyhealthhats@gmail.com Material on this site created by others is theirs, and use follows their guidelines.

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The post 296 Pages of Data, Zero Bites of Information first appeared on Danny van Leeuwen Health Hats.

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Using AI to track symptoms, weigh medication options, and advocate. Not a cure, a toolkit. An honest, careful path without handing over the wheel.

Summary

Health Hats reviewed Melissa Reynolds’ book on pregnancy in 2019, and they bonded over the fact that a man had blurbed it. Now she’s on to something new: she’s been figuring out how to use AI to manage a body that’s been hard to live in for two decades. The turning point came in a diagnostic unit, alone in the dark with no idea what would happen next. She opened Claude and asked what the odds were. The answer was enough to let her breathe.

What follows is one of the more grounded conversations you’ll hear about patients and AI. She tracks her symptoms in a spreadsheet and asks AI to surface what she’s missing, which is how she learned that her fatigue flares two days before her gut does. She brings research to her GP, who welcomes it and smiles. She nods at the gastroenterologist, who warns her off “that ChatGPT thing.” She’s careful about the politics, careful about the safeguards, and clear that this is for driving your own care, not replacing your clinicians. Her advice for anyone curious is refreshingly un-hyped: know what state you’re in, get a buddy if you’re vulnerable, and tell the tool what you actually need. She calls it a powerful toy, used well.

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EpisodeProemMelissa Reynolds and I bonded when she invited me to review her book on pregnancy, fibromyalgia, and chronic fatigue syndrome in 2019. That still makes us both laugh: a man had written one of the blurbs on the back cover. I thought it was a riot. Melissa thought it made perfect sense because the people who most need to understand what a pregnant body is going through are often the ones standing next to it, trying to help but not quite getting there.

Although we follow each other and frequently comment on each other’s posts, our last real conversation was in 2020 about a yoga program she was starting. A few small things from that conversation are still part of my every-other-day stretching and balance routine.

I’m drawn to Melissa because she accepts what is, including that hard-to-live-with body, and creates and shares tools for those of us with the same or different diagnoses but similar lived experiences. All for best health.

Our friendship has grown virtually, so we can pick up where we left off. This time, I reached out to Melissa after seeing her posts about her exploration of AI.

Alone in the dark with a questionHealth Hats: What lessons are you learning as you use AI?

Melissa: It’s funny to say you use AI because it’s hard not to use it now. But I’ve started exploring how AI can support me on my health journey. For a while, I was using it for bits and pieces. Then this gut issue came up. I don’t know if you’ve seen much of the journey, but I suddenly developed severe gut issues. They sent me for stool tests, which I’d never done before, and the results came back abnormally, astronomically high, so they sent me to the hospital.

Melissa: They ran all sorts of tests. They rushed me through a colonoscopy, and then I was sitting there on my own in the dark in this hospital room. It’s an ADU unit, so it’s for diagnostic purposes. It’s not a ward. There was no TV, hardly anyone around, and I was quite alone, with no idea what could happen next.

Melissa: So, I went into Claude and explained what had happened, and I said I needed to know, statistically, what was likely going on. It talked me through what it could be. That was enough for me to relax and go, okay, that’s cool.

Health Hats: Where does it stand now?

Melissa: Until a week ago, it looked very likely it was going to be one of those irritable bowel diseases. But right now, we’re completely unclear. I’ve got more specialists to see. But I realized the applications, so I started researching.

Deciding to use every toolMelissa: Look, I’ve been sick for 20 years. I’ve been mistreated more than I’ve been well treated, and I’ve lost half my life. A lot of the doctors I saw were, meh. In the last 10 years, I’ve improved my life dramatically, but what upsets me is that I’m still nowhere near normal. That means I was very sick, and most of the doctors I saw were like, meh, even though there were concrete things to treat. They were misdiagnosing me. They were not treating me.

Melissa: So I thought I was going to use every tool I had available. I actually told Claude, “Okay, you know my history. We’ve been chatting for a while. Tell me how I can use what you can do better.”

The fatigue was signaling two days earlyMelissa: I do a lot of data analysis in my part-time job, so I thought, let’s get serious about my data analysis. I moved my symptom tracking from a physical book to a spreadsheet. Then I created a prompt where I upload it once a month and say, “Here’s my data. Tell me what you’re noticing that I’m not.” It notices things I don’t.

Health Hats: Like what?

Melissa: It was the post-exertion malaise flares that I wasn’t quite understanding.

Health Hats: Post-exertion malaise. That’s the blowback from overdoing it, the hallmark of ME/CFS and other energy-limiting conditions?

Melissa: Yes. It also picked up that when I was having my gut flares, my fatigue would signal a couple of days beforehand. Every time I had a gut flare, my fatigue would worsen beforehand. So, it’s now pretty clear that whatever’s going on with my gut is systemic. It’s part of a larger situation, not just related to my gut.

Melissa: The data analysis and the research have been so helpful. I say, do some deep research, and I want you to talk to me about this topic, and it does. But you have to be very clear about what you want it to do. There’s a lot to learn about prompting. It’s very nuanced.

Smiling, nodding, and using it anywayHealth Hats: How do the clinicians you’re partnering with respond? Are they curious or suspicious? There must be a range of responses.

Melissa: It depends. My gastroenterologist keeps saying, “Oh, I hope you’re not using that,” and they always say ChatGPT when they mean AI. So I’m smiling and nodding, but obviously I was. My GP, though, is fantastic. She loves it when I bring her research. She’s engaged. If you’re comfortable with people googling, then AI is just the next step. It’s more efficient than googling.

Melissa: And I never go to her and say, “I’ve self-diagnosed myself with this.” It’s more like, “I’ve done some research.” Here’s a practical example. The gastroenterologist suggested a medication, and I don’t feel comfortable taking it. Even though they downplay the interaction with another medication I’m on, I don’t feel comfortable with the overall risk, especially when you’re playing with heart rate and blood pressure. I have low blood pressure and heart rate issues.

Melissa: The wonderful thing about AI, compared to what I can do on a hard day, is that it can pull things together. We were talking about this medicine, and it found an alternative, a lower-risk medicine that also supports this other thing. The one thing I don’t want is to end up on loads of medicines and not be sure what’s working. A doctor is surely happy to have me as an informed participant in my care, especially when chronic conditions require patient buy-in.

Where the records actually liveHealth Hats: You’re in New Zealand. I always wonder how the culture and politics around medicine and these tools differ from those here, where it’s a bit of a free-for-all and the guardrails are thin.

Melissa: We’re in a very different situation. For a start, we’re a public system, but it’s crumbling. You have the people reliant on it, the people failed by it, and the few who can afford private insurance, which mostly just means you see the same people without being gatekept. We’re very segregated. Each specialty focuses on a single organ. As far as I know, we have one multidisciplinary clinic for long COVID, and it’s in the South Island, so I have no access to it, even though my ME/CFS came on after a viral illness and I’d benefit from exactly that.

Melissa: What we do have is one public record that’s stayed with me, and a recent change that allows patients to request any information an organization holds about them. That’s actually how a lot of things changed for me. I got access to my patient portal at 32, and that’s how I found out I’d been diagnosed with chronic fatigue syndrome. No one had told me. They’d just written it in there.

Health Hats: As opposed to all the times you were misdiagnosed, with both false positives and false negatives. And pulling it all together is the trick. I have a four-pound box of paper from one office, 500 pages, and 291 pages of PDF from another for three months of visits, all out of order and wildly redundant. So much of it is wrong. You start to realize that, at best, it’s grade-D information, and what I put in my journals and spreadsheets is probably the most accurate, which a doctor would never agree to.

Melissa: It’s the same here. The onus is still on the patient to gather it all and then use it. That’s a whole other thing, and it’s something I’ve always struggled with.

A very powerful toyHealth Hats: What words of wisdom do you have for people who are using these tools? Do you want to encourage them or caution them?

Melissa: First, think about what state you’re in. If you’re a bit vulnerable, don’t feel confident with technology, or are unsure about any of it, then seek guidance. Have a buddy or a mentor to do it with.

Melissa: If you’re like me, data-oriented and logical, deep research is great. But if you’re someone who needs minimal information and more would fry your nervous system, then either don’t do it, ask someone to do it for you, or tell the AI, “I don’t need lots of detail; give me the three key points I can take away.” You can always guide it. Many people use it like they’re talking to someone, which can be useful when you’re working through things. But if you can prompt it well, you’ll get what you need.

Melissa: That’s why I’m writing a series of articles. I want to guide people so they can focus on one thing, like how to use their data to get good analysis, because it’s a lot. First, you’ve got to learn how to prompt, then what to put in, then how it works. My articles are trying to make it more accessible. It’s always us, the people who are chronically ill, who are least able to jump on opportunities and make the most of them, and we’re the ones who need it most. But if you’re worried about it or opposed to it, leave it.

Health Hats: I’m not a black-and-white person; I’m more nuanced. It helps with some things but not others. One thing I’m struggling with is that it gives me too much to share, and I want to share all that depth. Maybe it’s useful for me, but not for other people. So, I’m learning to set limits. My audience has three minutes or 500 words. Then I can ask more questions. It’s amazing. It’s a toy, in a way. A very powerful toy.

Melissa: Thank you so much. I can’t believe it’s been so long.

Health Hats: I know. Do we need to make an appointment for another four years?

Melissa: No, let’s do six months.

Health Hats: Sounds good.

See you around the block.

ReflectionNeither of us is going to be cured, whatever that word even means. But I am living a good life. I am playing music, traveling, and in love. My grandson just turned eighteen and is graduating from high school. Life is good. That is the whole point, really. The point was never the technology.

I know my enthusiasm for using Claude turns some people off. A number of you seriously distrust anything with AI in it, and I don’t dismiss that. I’m uneasy too, less about the tool in my hands than about the AI-industrial complex behind it, the money, power, and momentum, something like splitting the atom: enormous force, no guarantee of where it gets pointed. And yet here I am, using Claude and Claude Cowork to cut the forty to sixty hours I spend on each episode down to about twenty. I’ll share how in future episodes. I hold the worry and use the tools anyway.

The point is deciding to drive our own train and being glad to have one more tool in the cab. A tool, a toy used best by someone who knows their own mind and keeps both hands on the wheel.

Referenced in episode

Melissa’s Substack

Melissa’s book on pregnancy, fibromyalgia, and chronic fatigue syndrome

Melissa’s yoga program

Melissa’s book: Fibromyalgia Won’t Win: Learning, Loving and Living with Chronic Pain and Fatigue (Melissa vs Fibromyalgia The Collection),

New Zealand’s Right to Records.

Please comment and ask questions:

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, TikTok to @healthhats
Substack
Patreon

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk
Leon van Leeuwen: editing and site management
Oscar van Leeuwen: video editing
Julia Higgins: Digit marketing therapy
Steve Heatherington: Help Desk and podcast production counseling
Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection
Claude, Perplexity, Auphonic, Descript, Grammarly, DaVinci

Inspired by and Grateful to:

Photo Credits

Related episodes from Health Hats

Fibromyalgia. Managing Pain. Doing the Work.

Fibro Mama – Book Review

Accessible Yoga: Honor Your Body

Artificial Intelligence in Podcast Production

Creative Commons Licensing

CC BY-NC-SA

BY: credit must be given to the creator. NC: Only noncommercial uses of the work are permitted.

SA: Adaptations must be shared under the same terms.

Please let me know. dannyhealthhats@gmail.com Material on this site created by others is theirs, and use follows their guidelines.

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From a 10-bed lying-in hospital to Handel’s Messiah, the Rotunda Maternity Hospital has operated continuously for 281 years. A Nurses’ Week story.

Summary

Across the street from Danny’s Dublin hotel stood a large white institutional building with no signage. It turned out to be the Rotunda Hospital — the oldest continuously operating maternity hospital in the world, delivering babies in the same building since December 8th, 1757. Surgeon Bartholomew Mosse founded it after losing his wife and child in childbirth, trained as a midwife in Paris at a time when physicians were penalized for practicing midwifery, and returned to Dublin determined to build something that didn’t yet exist.

The first version had 10 beds and delivered 190 babies in its first year, with one maternal death. Unable to raise money for a larger hospital — no one wanted to fund poor women’s care — Mosse attended the world premiere of Handel’s Messiah in Dublin in 1742 and was inspired. He turned the future hospital site into a pleasure garden with orchestras, dances, and theater to attract wealthy donors. He was later imprisoned for debt, escaped through a castle window in Wales, hid in the mountains for three weeks, and died exhausted and broke in 1759, less than two years after the new hospital opened.

Sara E. Hampson, one of Florence Nightingale’s original nurses, became the hospital’s first female superintendent in 1891 — a thread that ties Nurses Week directly to this building, Danny almost walked past.

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Podcast episode on YouTube

EpisodeProem: No Signage, No Appointment, No ProblemHello. Welcome to 2026 Nurses Week, May 6th through 12th. I’m very proud to be a nurse. I’ve been a nurse for 50 years. And my grandson’s going to nursing school next year. He’s graduating as a senior and will attend Loyola University in Chicago for its nursing program. I’m very proud.

I want to tell you a story about one of the most significant things that happened during our trip to Ireland a couple of weeks ago. We were staying in the north-central city of Dublin, Ireland. Across the street, I saw a big white institutional facade with no signage. It looked like the side of the building. Next to it, on its right, was a dome with a more modern sign that read “Ambassador”. So, I went into the hotel and asked, “So what’s this building?” And they didn’t know.

I looked it up, and it turned out to be the Rotunda Hospital. The Rotunda Hospital is the oldest freestanding maternity hospital in the world.

Midwifery Was Scandalous. He Did It Anyway.Now let me see. I’ve got some notes here. The hospital was founded in 1745 by a man named Bartholomew Mosse, M-O-S-S-E. He was a certified surgeon. His wife and child died in childbirth. After this tragedy, he left Ireland to serve as a doctor with the British Army. While he was away, he received midwifery training at a hospital in Paris and obtained his midwifery license, which was unusual. In fact, fellows of the Royal College of Physicians were even penalized if they practiced midwifery.

But Mosse wanted to change that. So, he built this small place, 10 beds, that… Let’s see, when did it open? I guess it opened in 1745. Mosse’s ambition was to build a dedicated maternity hospital in Dublin to provide medical care and shelter to the city’s penniless mothers. This came after he encountered unspeakable conditions during his practice, particularly in the aftermath of the 1739 famine.

So he established this 10-bed hospital. It was in a small theater called the New Booth Theatre. It says here that it was the first lying-in hospital of its kind in the world. It had only 10 beds, but in its first year, 190 babies were born, and just one mother died. But obviously, they couldn’t meet demand with 10 beds.

When No One Funds Poor Mothers, Try DancingMosse tried to raise money to build a larger hospital, but nobody really wanted to give money to poor women. So he happened to attend the world premiere of Handel’s Messiah on April 13, 1742. While he was there, he was inspired to raise money by entertaining the wealthy.

Somebody sent me a picture of the Handel statue that’s in front of the theater where the premiere was, which I thought would be interesting.

According to my research, on the evening of April 13th, 1742, Handel conducted the world premiere of his Messiah on Dublin’s Fishamble Street, and Mosse was present. Historians suggest that this moment crystallized Mosse’s idea of using high-society entertainment to fund a hospital for the poor.

So Mosse turned the proposed hospital site into a pleasure garden with a live orchestra, theatrical performances, and dances in a coffee house, marrying philanthropy with frivolity to reach the wealthy.

Debt, Daring Escape, DeathHere’s a little interesting tidbit. Lotteries nearly destroyed Dr. Mosse. Before he was able to return to Ireland, he was arrested and charged with being 200 pounds in debt, and he’s thought to have been imprisoned in Beaumaris Castle in Anglesey, Wales. The story was that he managed to escape through a window and hid in the Welsh mountains for three weeks before reaching Ireland. He then vindicated himself by publishing his receipts and lottery accounts, whatever. But less than a year after the hospital opened, he was taken seriously ill, exhausted, heavily in debt, and petrified about the prospect of arrest and imprisonment. He died on February 16th, 1759.

Fix the Air, Save the Babies. Then and Now.Around 1781, when the hospital was poorly ventilated and every sixth child died within nine days of birth, they realized the problem was poor ventilation. Ventilation was improved, and mortality dropped to 1 in 20 over the following five years.

They’re also planning to celebrate their millionth birth in 2026. It’s just amazing. I met a saleswoman in a sweater store who asked where we went in Dublin. When I told her about the Rotunda Hospital, she said she had a difficult pregnancy and birth without insurance. She received care at the Rotunda Hospital, with her baby in neonatal intensive care for three weeks and herself as an inpatient for two weeks. Awesome care!

So, when we were there, I, an old white guy in a wheelchair, motored into the Rotunda Hospital and stopped at the registration desk to ask if I could speak with someone. I had not made an appointment. I was leaving the next day. Very nice people. I tried to get hold of people in their library, research, and marketing, but they were busy, of course.

Oldest? It’s Relative.I’m really impressed by the idea of being the world’s longest-operating specialist hospital. I was trying to get some perspective on that, so I looked up the oldest continuously operating hospitals, and here’s what I learned. I learned that in the United States, the oldest continuously operating hospital is Bellevue Hospital in New York City, which opened in 1736 as a six-bed infirmary.[1]

So, it began as a haven for the indigent and is still a major public hospital on the East Side of Manhattan. It opened nine years before Mosse opened his first lying-in hospital. The other long-running hospital is the Pennsylvania Hospital in Philadelphia[2], established in 1751 by Benjamin Franklin and Dr. Thomas Bond. It’s still operational as part of the University of Pennsylvania Health System. The oldest hospital is the Hôtel-Dieu in Paris[3], which officially opened in 650 AD, and that’s the hospital where Mosse became a midwife. There’s St. Bartholomew’s Hospital in London, founded in 1123[4]. And there’s the Hospital de Jesús Nazareno in Mexico City, opened in 1524. But really, the Rotunda is the oldest maternity-only specialist hospital, continuously operating in the world, which is a more specific and arguably more impressive claim than the general acute care hospitals Bellevue and Hôtel-Dieu, which have both moved buildings, changed missions, and been rebuilt.

The Rotunda has been delivering babies in the same building since December 8th, 1757. That’s really something.

Reflection: Nightingale Was Here TooSo, let’s bring this back to Nurses Day and to Florence Nightingale. Interestingly, Sara E. Hampson was one of the original Nightingale nurses and the first lady superintendent of the Rotunda Hospital in 1891.

So yay, nursing. Yay, history. I’m really looking forward to exploring more of this amazing hospital in Dublin.

I wonder who was in charge all these years, and how it survived past Mosse and through those first decade or first few years? And then, how did the Rotunda Hospital survive war, famine, pandemics, and technological change? What research occurred there? Is there a diaspora of Rotunda alumni?

Anyway, more to come. Thanks.

Referenced in episode

[1] By Harper’s Weekly – Harper’s Weekly, Public Domain, https://commons.wikimedia.org/w/index.php?curid=6014479

[2] William Strickland (1788-1854) Engraver: Samuel Seymour (1796-1823), Public domain, via Wikimedia Commons

[3] I, Clio, CC BY-SA 3.0 http://creativecommons.org/licenses/by-sa/3.0/, via Wikimedia Commons

[4] See page for author, CC BY 4.0 https://creativecommons.org/licenses/by/4.0, via Wikimedia Commons

Are you part of the Rotunda Hospital diaspora? Find me at dannyhealthhats@gmail.com. Tell me your version.

Please comment and ask questions:

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, TikTok to @healthhats
Substack
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Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk
Leon van Leeuwen: editing and site management
Oscar van Leeuwen: video editing
Julia Higgins: Digit marketing therapy
Steve Heatherington: Help Desk and podcast production counseling
Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection
Claude, Perplexity, Auphonic, Descript, Grammarly, DaVinci

Inspired by and Grateful to: Dr. Lisa Masinter and Dr. Michele Whitt, Janice Tufte, Linda DeRosa, Luc Pelletier, Cherie Binns

Photo Credits

Ann Boland, Paul Boland, Janice Tufte, Danny van Leeuwen, and as referenced in the transcript

Related episodes from Health Hats

Systemic Disparities & Inequities in Maternal Health. Still?

OB Nurse. Cannabis Nurse.

Build It and They Will Come?

Artificial Intelligence in Podcast Production

Creative Commons Licensing

CC BY-NC-SA

BY: credit must be given to the creator. NC: Only noncommercial uses of the work are permitted.

SA: Adaptations must be shared under the same terms.

Please let me know. dannyhealthhats@gmail.com Material on this site created by others is theirs, and use follows their guidelines.

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Participatory governance in healthcare means asking the right people the right questions. Three stories where listening as leadership changed everything.

Summary

This episode is about listening as leadership — the gap between where knowledge lives and where decisions get made, and what it costs when we pretend that gap doesn’t exist. Three stories from my career as a nurse manager, quality director, and VP — three moments where participatory governance in healthcare produced the same result: a no to the status quo. Not a radical no. An obvious one. Obvious, that is, once someone finally asked the people living inside the system.

Topics covered:

Open visiting hours in the ICU — and what happened when staff pushed back
Seven therapy visits, no prior authorization required — and what happened when the company was acquired
A disability services resident on a board of directors — and the simple fix that improved every patient experience metric
Why participatory governance is the fastest, cheapest diagnostic tool most health system leaders never use
The honest difference between patient advisory boards and actually sharing power with patients
What patient-centered care looks like when it moves beyond consultation into real shared decision making

Click here to view the printable newsletter. More readable than a transcript.

Contents

Podcast episode on YouTube

EpisodeProemI’ve spent most of my career in institutions, hospitals, managed care companies, and disability services agencies. These are large, slow-moving systems with their own inertia, logic, and knack for designing processes that work best for billing, and not so well for those receiving or providing services. I should know. I’ve been inside these systems as a clinician, boss, consultant, caregiver, and patient.

The boldest changes I was part of didn’t come from a consultant’s report. They didn’t come from a board retreat or a leaders’ strategic planning day off-site — though, Lord knows, I’ve sat through plenty of those. They came from the moment when someone, usually someone with very little institutional power, said: This doesn’t work. It’s hurting us.

The hardest part wasn’t hearing that. The hardest part was finding the gumption to act. Institutions are good at explaining why things are the way they are. They have binders of policies for that.

My secret as a consultant was embarrassingly simple: the people who hired me already had the answers they needed. The nurse who’d been there fifteen years knew. The member who couldn’t get her calls returned knew. I sought them out, listened, and translated their words into a PowerPoint that the boardroom could hear.

I want to tell you about three times I got it right. Three moments when the change that mattered was a no. No to visiting hours that kept families from the people they loved. No to a prior authorization process that treated patients and clinicians like suspects and required an army to administer that suspicion. No to a system that let care aides disappear from people’s lives without warning or goodbye, as if the people whose lives they were in didn’t deserve a heads-up.

None of these nos were mine originally. I heard them from a family pacing a waiting room, from a member who couldn’t get the help she needed, and from a man with a disability who sat on our board and told us, plainly, what it felt like to wake up one day to find that someone essential to his life was simply gone.

Participatory governance sounds like it belongs in a policy manual, right between stakeholder alignment and learning organization. When participatory governance works, it’s permission. Permission for the people living and working within a system to tell the truth about it. And the willingness, on the part of whoever’s in charge, to let that truth land. Even when it’s inconvenient. Especially then.

Part 1: ICU Doors OpenMy first experience as a boss was as an ICU nurse manager, a job I got, I should mention, without ever having worked in an ICU or having been a boss. A story for another day. The honeymoon was short. Strictly prescribed visiting hours, ninety minutes in the morning, ninety in the evening, were leaving families miserable. I could see it. They could feel it.

In collaboration with my bosses, the ICU medical director, and the chief nurse, I eliminated visiting-hour limits entirely. My staff, who had recruited me for the role, now deeply regretted it. I hadn’t consulted them or thought through the workflow implications. They were furious, and they weren’t wrong to be.

But we kept the visiting hours open. Over time, something shifted. I learned how to be a boss. Nurses learned to include families in care and treatment. Patients and families arrived home better prepared. Physicians, for their part, didn’t much care either way.

The lesson I learned: this was a story about control. Mine, the nurses’, and ultimately the families’. We eventually set up an informal patient and family advisory group, not because I had planned to, but because we needed them in the room.

Part 2: Seven Visits, No Questions AskedMy job title was Director of Quality at a behavioral health managed care company. If you’ve spent any time in managed care, you know what that means: Director of Trying to Get an A+ in Every Measure, Whether It Has Meaning or Not.

Prior authorization was the centerpiece. A member needs therapy. Their provider submits a request. Someone on our end reviews it, approves or denies it, requests more information, waits, and follows up. The member waits. The provider waits. And somewhere in all that waiting, the person who needed help either got it, gave up, or got worse.

I inherited this process. I did not invent it.

My boss and I set up an advisory group with members on one side and providers on the other. We asked about their experiences with our company. They were not subtle. Members said the pre-auth process made them feel they had to prove they deserved care. Providers said the company’s default assumption was that they were lying. Neither response was a ringing endorsement.

So, we experimented: seven visits, upon request. No authorization required. If a member or their provider asks, they get them. No forms, no review, no waiting.

The result: outcomes held. Members received care faster. Providers stopped spending half their administrative time on the phone with us. And our call center, the engine room of the prior authorization machine, grew quieter. Then quieter still. A substantial portion of our staff spent all day managing a process that, in large part, was designed to manage itself. Strip it out, and you didn’t need nearly as many people to run it.

The bureaucracy wasn’t protecting anyone. It was the cost.

We had real data. Member satisfaction trended up. Providers, for the first time in recent memory, said something positive about the company. The advisory group had surfaced a truth that no quality metric had found, because no quality metric had asked the right people the right question.

Then the company was acquired. New owners, new priorities, no appetite for any of this. The program was terminated, and the advisory group disbanded. I can only assume the prior authorization process resumed its proud tradition of making everyone miserable in the name of oversight.

I learned that participatory governance surfaces the truth faster than most quality improvement methodologies I’ve encountered. But institutions don’t always want the truth. Sometimes they want the process. The process is familiar. It distributes responsibility. It means nobody has to decide. The advisory group uncovered a truth. It turned out that the people who bought the company got a veto.

Part 3: The Right to Say GoodbyeThere’s a particular kind of organizational meeting where everyone knows something is wrong, the data is right there on the slides, and somehow the conversation goes nowhere. Lots of nodding. Lots of concern. Lots of commitment to further analysis.

I worked as VP of Quality at an organization supporting forty thousand people with disabilities, many of them living in group homes, relying on personal care aides for the most intimate parts of daily life. Getting dressed. Eating. Toileting. Moving through the world.

At my first Board meeting, we reviewed satisfaction survey results, which were poor. They were not nuanced, requiring careful interpretation. They told us something was bad. And we were doing what organizations do: analyzing, discussing, and scheduling follow-up meetings to review the analysis.

We were not asking the people who lived there.

The agency was committed to resident/patient participation in governance committees, including the Board; in this case, a resident of one of our group homes served on the Board. Not as a symbol. As a Board member. At one of these meetings, in the middle of what was shaping up to be another productive session of collective concern, he said something that stopped the room.

He said: People leave without warning. A personal care aide, someone who helps you start each day, who knows how you take your coffee, which jokes make you laugh, and how you like your blanket folded, is just gone one morning. No notice. No goodbye. Someone new shows up, and you’re expected to adjust.

He said it plainly, not as an accusation but as a fact. He apparently assumed, incorrectly, that we already knew.

We didn’t. Or rather, someone knew. The people living in the homes knew. The aides probably knew. It just hadn’t made it into the meeting room until he put it there.

The fix was insultingly simple. When an aide left, for any reason, residents would be told in advance. A chance to say goodbye. A proper introduction to whoever came next, rather than a key, an address, and good luck.

That was the intervention. Advance notice, a goodbye, a hello — the basic courtesies we’d extend to anyone, anywhere, in any other context.

Survey results improved dramatically in the next cycle. Not in one or two categories. Across the board. Because what was wrong wasn’t a program or a resource allocation. It was that the people living inside the system had been treated as though their experience of it didn’t count as information.

The lesson I carry from that room is the simplest I know: the person living inside the system always knows. They know what’s breaking, what would fix it, and they’ve usually been waiting, sometimes for years, for someone to ask.

You just have to put them in the room and believe them when they speak. The keyword is just. Just assumes a lot.

Synthesis: What’s Common Across All ThreeThree organizations. Three populations. Three problems, unresolved within systems staffed by smart, well-meaning people. In every case, the answer was already there. It lived in the wrong room.

I want to be honest about something. Looking back, only one of these three was truly participatory governance: the man in the group home who served on our board. The ICU families and advisory group members had real influence but no structural authority. They could inform decisions, but they couldn’t stop them. That distinction matters, and I don’t want to paper over it.

What they all shared was something simpler yet harder than governance design: someone with institutional power chose to ask, then chose to act on what they heard.

The families pacing the ICU waiting room knew visiting hours weren’t protecting patients; they were protecting the unit’s sense of order. The members and providers in that behavioral health advisory group knew prior authorization wasn’t ensuring quality; it was ensuring paperwork. The man on our board knew what was breaking down wasn’t resources or staffing ratios. It was the simple human expectation of a goodbye.

None of them needed a consultant. They needed someone with enough authority to ask the question and enough humility to sit with the answer.

Here’s what I’ve come to believe: participatory governance, done seriously, is the fastest and cheapest diagnostic tool any leader has. Faster than a consultant. Cheaper than a task force. More accurate than a satisfaction survey that asks the wrong questions of the right people and calls it listening.

The nos in these stories weren’t radical. They were obvious, embarrassingly obvious, once you asked the people who already knew. What made them feel radical was the gap between where the knowledge lived and where decisions were made.

That gap has a name. Several, actually. We call it hierarchy, liability, chain of command, and expertise — the comfortable assumption that the people at the top understand a system better than those inside it every day. Sometimes that’s true. Often it isn’t. And the cost of acting as though it’s always true is borne by those with the least power to push back. The anxious family in the hallway. The member who couldn’t get through. The man in the group home who, generously, assumed we already knew what he was about to tell us. They were the experts. We had the org chart.

ReflectionHonestly, I’m proud of these three stories, but I’m not sure I deserve much credit.

In each case, the hard work, the observing, the enduring, the knowing, was done by someone else. A family pacing a hallway. A patient who kept calling back. A man who showed up for board meetings and told the truth to a room that had been avoiding it. I contributed a willingness to ask and enough positional authority to act on what I heard.

I’m struck by how long those answers had been waiting. The ICU families weren’t new. Frustration with prior auth wasn’t a surprise to anyone who’d navigated it. How long had group home residents been losing people without warning? Nobody seemed to know exactly, long enough that it had stopped registering as a problem and had started registering as just the way things were.

That’s the part I can’t shake: the way systems normalize their own failures. The way this is how we do it becomes indistinguishable from this is the only way it can be done. And the people most hurt by that confusion are usually the least positioned to correct it.

I got lucky. Three times, I was in the right seat, and the right person was willing to tell me what I needed to hear. Not every leader gets that, and not every leader goes looking for it.

The question I’d leave you with — the one I still ask whenever I walk into a new system, a new organization, or any room where decisions are being made about people who aren’t present:

Who already knows the answer? And what would it take to let them say it out loud?

If you’ve been in that room — where someone finally said the quiet part and the right no was finally spoken — I want to hear about it. Find me at dannyhealthhats@gmail.com. Tell me your version. I promise you: it’s better than you think. And someone out there needs to hear it.

Please comment and ask questions:

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, TikTok to @healthhats
Substack
Patreon

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk
Leon van Leeuwen: editing and site management
Oscar van Leeuwen: video editing
Julia Higgins: Digit marketing therapy
Steve Heatherington: Help Desk and podcast production counseling
Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection
Claude, Perplexity, Auphonic, Descript, Grammarly, DaVinci

Inspired by and Grateful to: Jan Oldenburg, Laura Marcial, Ronda Alexander, Libby Hoy, Lacy Fabian, James Harrison

Photo Credits

NASA

Referenced in episode

Related episodes from Health Hats

Patient Family Advisors. Back 2 Basics

Teachable Spirit. Patient Family Advisors.

Listen First, Lead Together: Advocacy and Power Dynamics

Artificial Intelligence in Podcast Production

Creative Commons Licensing

CC BY-NC-SA

BY: credit must be given to the creator. NC: Only noncommercial uses of the work are permitted.

SA: Adaptations must be shared under the same terms.

Please let me know. dannyhealthhats@gmail.com Material on this site created by others is theirs, and use follows their guidelines.

Disclaimer

The post Participatory Governance: Right People Right Question first appeared on Danny van Leeuwen Health Hats.

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Transparency sounds simple until you’re standing in a meatpacking plant. Health Hats digs into what we want to know—and why it matters.

Summary

AI is everywhere—but do you actually know when it’s being used?

In this episode, Danny_Health Hats uses the sausage-making analogy to explore what transparency in healthcare AI really means: what we want to know, what we can handle knowing, and what we should be demanding.

“Values are hard. Slogans are easy.”

Danny moves from personal curiosity to a challenge for seekers, solvers, and communicators in the health space. How do business interests shape the push for transparency? Who’s doing the work? And what’s your next step?

Click here to view the printable newsletter. More readable than a transcript.

Contents

Podcast episode on YouTube

Please comment and ask questions:

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, TikTok to @healthhats
Substack
Patreon

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk
Leon van Leeuwen: editing and site management
Oscar van Leeuwen: video editing
Julia Higgins: Digit marketing therapy
Steve Heatherington: Help Desk and podcast production counseling
Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection
Claude, Perplexity, Auphonic, Descript, Grammarly, DaVinci

Inspired by and Grateful to: Tomas Moran, Marianne Hudgins, Laura Marcial, Jan Oldenburg, Christine Von Raesfeld, Andrea Downing, Susannah Fox, Emily Hadley

Photo Credits

Referenced in episode

Claude

The Light Collective

Chicago Union Stockyards

Susannah Fox’s Rebel Health

EpisodeWhat Does Transparency Mean?Today I’m thinking about AI and transparency. What does that mean? Academically, I ask: Who’s making decisions about the AI methodologies and algorithms? How is auditing done? Then I think, what’s AI? I use Claude as an editorial companion when I write. I consider my audience and what I want to communicate. I write something, then I submit it to Claude, ask questions, and review the responses. But really, what’s the point of all that? The point is, there are different ways to use AI, and I don’t always know when it’s being used. It feels like AI is everywhere, but I’m not sure it’s always obvious. That kind of creeps me out—just like I know there are electric wires, but I don’t know exactly where they are. I know there are gas lines, but I don’t always know where they leak. I just assume they’re okay.

When I think about transparency, I ask myself, transparency about what? Do I really want to know? Is transparency like knowing how the sausage is made? Sometimes I find it fascinating to know that sausage is being made and that the sausage I get is made somewhere by someone. I have a limited attention span and bandwidth to understand how sausage is made.

What do I mean by transparency? I want to know what I don’t know. Which is like almost everything, right? Although I’m full of myself, I know that there’s so much I don’t know about much.

The Light Collective emphasizes transparency in their mission, especially regarding governance and AI rights. They expect openness about how decisions are made, people’s business arrangements and values, and how data is managed, gathered, processed, and interpreted. They believe transparency is a fundamental obligation and a basic right.

The Sausage Analogy: How Much Is Too Much?But I can’t help but think that when I talk about transparency, I mean understanding how the sausage is made. My dad was a meat packer. He sold casings and sausage skins, and I saw the process firsthand in the meatpacking plants in Chicago. It was fascinating. At ten years old, I was excited to be there. OMG, I had no idea. This is what’s involved in making sausage and what’s inside. In a way, it’s kind of gross; TMI—too much information. It’s also very time-consuming.

I’m eager to understand how the sausage is made for things that are important to me, but just for a moment. It’s hard to accept the work involved. So, what parts of the sausage-making do we want to know? Do we want to know whether there are artificial, natural, or collagen casings? If you wonder what those are, ask me. Do we want to know about the meat, the additives, or where they come from? What are the conditions of the animals from which the sausage casings come—natural casings, which are guts? Where do they come from? How are those animals treated? It’s complex. I have to decide what I want to know about how the sausage is made. I want to find out because I’m curious, and I’ll seek that information and share it. It might be helpful for people to have a dashboard about transparency.

From Slogan to ActionTransparency is a slogan. Slogans are critical in advocacy and marketing. When it comes to slogans, I’m wired to ask for more clarity. Think sausage.

I’m action-oriented. What’s the next step? How will I measure success? Wanting transparency leads to what actions?

I don’t want less transparency; I want more. So, I guess we have to choose our battles, decide to learn something about how the sausage is made, stay vigilant, and identify what isn’t transparent but should be. Would it be enough for me to learn some of how the sausage is made, share that, and figure out how to protect it?

Values are hard. Slogans are easy.

Seekers, Solvers, and CommunicatorsI’ve talked a lot about sausage. I treasure the analogy because it’s a family business. But let’s focus on transparency in healthcare AI, which is where I started. I’m a seeker, following Susannah Fox‘s idea of different types of health rebels. Some of us are seekers, meaning we want to learn more. So, what can we specifically learn about transparency? What are the features of transparency? How do business interests influence this push for transparency, and what role does policymaking play?

Then there are solvers. Who’s working on transparency? Do they connect? Who’s posting about it? Who’s doing the work? Who’s fighting? Who are the champions? Who’s leading this effort? Who’s networking? What are the networks, social media, virtual groups, and organizations, and where are they located?

Finally, I am a communicator, and I will continue to communicate about it. I’m a little bit of those other things, but more importantly, I gather all that and then share it with you. So, let’s see where this goes. Hey, thanks so much for spending the time with me; I really appreciate it.

Related episodes from Health Hats

Give Me My Damn Data. Then What? Managing Permissions.

Catch-22.0: AI Creates Problems It Solves

Healthcare AI for Humans: Governance, Research, and Rights

Artificial Intelligence in Podcast Production

Creative Commons Licensing

CC BY-NC-SA

BY: credit must be given to the creator. NC: Only noncommercial uses of the work are permitted.

SA: Adaptations must be shared under the same terms.

Please let me know. danny@health-hats.com. Material on this site created by others is theirs, and use follows their guidelines.

Disclaimer

The post Transparency in AI: How the Sausage Gets Made first appeared on Danny van Leeuwen Health Hats.

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Health Hats walks & floats through ancient Maya caves in Belize with forearm crutches, teamwork, trust, and shared decision-making every step of the way.

Watch this episode on YouTube. Audio is published, but not the same

Podcast episode on YouTube

Summary

What does it take to go cave tubing in Belize when you use forearm crutches and have no electric wheelchair? For Danny van Leeuwen, it takes the 3 T’s: Time (a half-mile walk), Trust (in guides and companions), and Talk (real-time decisions about stairs vs. river crossings). HHP245 is a first-person GoPro video of Danny floating through the sacred Caves Branch River — ancient Maya ceremonial grounds — with his wife and friend Linda. It’s part adventure, part health advocacy, and part proof that with the right team, you can push your capabilities further than you thought.

Click here to view the printable newsletter with images. More readable than a transcript.

Contents

Please comment and ask questions:

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, TikTok to @healthhats
Substack
Patreon

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk
Leon van Leeuwen: editing and site management
Oscar van Leeuwen: video editing
Julia Higgins: Digit marketing therapy
Steve Heatherington: Help Desk and podcast production counseling
Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection
Claude, Perplexity, Auphonic, Descript, Grammarly, DaVinci

Inspired by and Grateful to: Mike and Linda DeRosa, Ann Boland, Ruben, David, and all our guides and helpers

Photo Credits for Videos

All by Danny van Leeuwen using GoPro10

Referenced in episode

Nohoch Che’en Caves, Branch Archeological Reserve,

EpisodeProemI delight in pushing the boundaries of my capabilities. In Belize, floating in a tube through caves and snorkeling stretched me. How can tubing stretch anything? It’s passive floating. The event included a mile-long walk to the cave entrance – relatively flat with some steps and wading across the river, a mere six-inches deep. No electric wheelchair, just my forearm crutches. Our guide and my compatriots shared in the decision-making and assisted me. This video episode was taken with a GoPro camera hanging around my neck. Watch the video. Reading will not give you the flavor.

NarrativeLet me tell you a little bit about where we are what you’ll see. Excuse me, as I will be certainly butchering some of the names of stuff. So where we are is Nohoch Che’en Caves, Branch Archeological Reserve, also called the Caves Branch River. It’s in the Cayo District, and districts are like provinces or states. It’s by far the most famous cave tubing destination in Belize and one of the most unique in the world. So this was sacred to the ancient Maya. They were considered portal to Xibalba, the Maya underworld. This wasn’t just mythology. The Maya actively used these caves for religious rituals and ceremonies, particularly during times of drought when they needed to communicate with the rain God, chaac. I don’t know. Archeologists have found ceramic offerings, jade artifacts and human remains inside; evidence of sacrificial rights dating back over 2000 years. The caves were largely forgotten after the Maya civilization declined and weren’t widely known to the outside world until the 1980s and nineties when the Belizean guides and explorers began documenting them and it became a active tourist destination in the early two thousands. So the Caves Branch River flows through a network of limestone caves carved out over millions of years. The system I floated on. Is part of a much larger Karst landscape riddled with interconnected caves. Some of them still unexplored. Pretty amazing, huh?

ReflectionThat was it. Fifteen minutes of about an hour total time and 30 minutes of recording. I hope it gives you a flavor of what we did. It was awesome. I will be producing a couple more videos from Belize over the next few months. The next video will be of the Mayan ruins, then making tortillas and tamales, and then, we’ll see.

Related episodes from Health Hats

Accessible Off-Road Travel in an All-Terrain Wheelchair

Costa Rica – Travel with Abilities

Reprise: Camino de Santiago. Rejuvenated, Inspired #21 & 164

Artificial Intelligence in Podcast Production

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The post Crutches, Caves, and Currents: Tubing in Belize first appeared on Danny van Leeuwen Health Hats.

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Former Nike exec Mark Hochgesang interviews Danny on Heavy Hitter Sports Podcast about MS & being an adaptive athlete. Just back from Belize! Training works.

Summary

My friend Mark Hochgesang, former Nike exec and host of Heavy Hitter Sports, recently interviewed me. While I usually wear my life on my sleeve on Health Hats, this conversation revealed something different—how I think about myself as an adaptive athlete.

Phil Knight’s mantra: “If you have a body, you’re an athlete.”

I never thought of it that way until Mark helped me see it. Training to travel? That’s athletic training. Loading a 60-pound wheelchair into an SUV? Strength work. Walking 3,500 steps a day with MS? Competition with myself.

Here’s what we covered:

The Swiss cheese brain scan – My MS diagnosis story (turns out I’d had it for 25 years)

The baritone saxophone – My neurologist’s #1 prescription for MS. Music creates new neural pathways.

The 3,500-step goal – Why movement is non-negotiable, even with foot drop and proprioception issues

The “every other day” rule – Setting yourself up for success (stretching, balance, upper body work, squats)

The two-minute bitch – No “happy horseshit” allowed. Life with MS sucks sometimes. Two minutes to vent, then move forward.

Training to travel – From 70 miles of Camino de Santiago to just returning from Belize (videos coming!)

The team – Wife (OT), sons, grandkids (my scouts!), medical team, massage therapists, the Cuban van driver who didn’t speak English

The win – People understanding that disability takes many forms and asking “How can I help you?” instead of aggressively helping

The legacy – Being remembered as “the cool Opa”

The biggest lesson? Build a team. You can’t do this shit alone.

Click here to view the printable newsletter with images. More readable than a transcript.

Contents

Please comment and ask questions:

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, TikTok to @healthhats
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Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk
Leon van Leeuwen: editing and site management
Oscar van Leeuwen: video editing
Julia Higgins: Digit marketing therapy
Steve Heatherington: Help Desk and podcast production counseling
Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection
Claude, Perplexity, Auphonic, Descript, Grammarly, DaVinci

Inspired by and Grateful to: my entire team

Photo Credits for Videos

Featured Image by Mark Hochgesang

Referenced in episode

Heavy Hitter Sports

EpisodeProemMark Hochgesang, a former Nike exec and my podcasting buddy, recently hosted me on his podcast, Heavy Hitter Sports. You all know I wear my life on my sleeve and take any opportunity to talk about myself. I’m sharing this episode of Mark’s because it reveals a different story of my abilities and self-image, which I now tell through my collaboration with Mark and his deep understanding of sports.

Redefining Athletic PerformanceMark: Welcome to Season 4 of Heavy Hitter Sports, where we talk to inspirational figures in the world of sports. Athletes come in many shapes and sizes, and not all heroes perform on a big stage. Today’s episode is a bit different and one that I’ve long been looking forward to. It’s focused on how we adapt to unplanned life changes and adversity, then train, compete, and battle to win on our own terms. My guest is a good friend and fellow podcaster, Danny van Leeuwen. Danny is a former nurse, healthcare executive, musician, traveler, and a man who has lived with multiple sclerosis for many years. This is not a tale about limitations or illness. It’s a story about focus, fortitude, optimism, preparation, and team-building to live an amazing life. Danny’s story as an adaptive athlete challenges us to rethink what strength, toughness, and success look like. If you care about maintaining optimal health, sharpening your mindset, and winning the long game, this is the episode for you. Danny, welcome, my good friend. I’m looking forward to catching up and talking to you about some of the challenges that have been thrown your direction in life. And I’d like to open by getting your thoughts on this Nike mantra first uttered by Phil Knight, who said, “If you have a body, you’re an athlete”. Your thoughts on that sentiment?

Danny: I never really thought about that until I met you, listened to your podcast, and delved into them. And it made me think about when I was getting ready to travel. When I put it in the frame that I was training to travel somewhere, then I started thinking, oh, that’s what Mark is talking about. Then it made me think. So never before. That was like the first time. I like it. I really like it, actually. It’s empowering.

Nerd to AthleteMark: Now, as a child, when you were growing up, you probably spent more time in libraries than you did on ball fields, correct?

Danny: I did. I was a total nerd. I had two left feet. I remember the day I learned to skip. I just thought it was one of the coolest moments of my life. Oh, I can do this. It’s interesting. No matter how old we are,

Mark: We can always remember skipping. But at some point in our lives, we skip for the last time, and we never know when that’s going to be. And then you can never get it back. Yes. You recently said something I absolutely love: you like feeling like an athlete. What does being an athlete mean to you today?

Danny: What it means is my goal is optimal functioning. And when I say functioning, it means physical, mental, and spiritual. Like most people, I have things beyond my control, like my genetics, my situation, and my culture. And when I look at an athlete, and I think, oh my goodness, what did they do that they’re at a peak for performance, whether it involves a ball or whether it involves something else? It’s amazing, and it’s empowering. Now, there’s a downside. When I look at athletes, I also think they’re pushing their limit. And every game, you see somebody who’s past their limit, and they have an injury. And so for me, I think of it a little differently in that I don’t want to have the injury. Like for me, the biggest danger is falling. And so I want to fall as infrequently as possible. I don’t want to hurt myself. So that might be a little bit different than an athlete.

CoachingMark: That’s interesting because when we were together a couple months back, when you were in Portland here for a conference, and I took you to the Blazers game, they were playing the Warriors and Steph Curry. Now, Steph, although he started in college as injury-prone, has had a really injury-free pro career. And that’s been all the difference for him. But I think every top-flight athlete fears the moment where it ends because an Achilles rips, a hamstring, whatever the injury might be, it’s ever-present. You can’t be thinking about it 100% of the time, or hopefully at all. There are those moments where a career ends.

Danny: The frame of being an athlete is very empowering. It feels like it gives me agency, control. I can train. I can modify. I can be coached. My wife’s an OT, an occupational therapist, and she is always thinking about being sure there are no throw rugs in the house. She put bars up in the bathroom. You get people who help you, coach you, and help modify stuff.

CompetingMark: Your comments also make me think athletes are always competing. And as a man with multiple sclerosis, you’re always competing too in your own way. How does that competitive fire show up daily for you?

Danny: That’s a good question. I am both like so not competitive, but I’m very competitive with myself. Like, why can’t I go on that trail? Okay, now what is it going to take for me to go in my wheelchair on that trail? Okay, I got my wheelchair and my crutches. Okay, I can go this far with the chair, then get out of it, and go up those steps or across that bridge with all these gaps in the boards.

Mark: That makes me think, too, that athletes, to be truly confident, have to prepare to the best of their ability. And that’s what you’re talking about, right?

Calculated RisksDanny: Yeah, I believe in calculated risks, but they’re calculated. I’m still not going to go across the street in my chair without looking both ways. And I can see that, with the people I’m with, their comfort with my sense of risk really varies over time. My wife would just be freaking out over some of the stuff I do. And I have to manage that too.

Mark: So let’s flashback in time to 2009 and the moment when you’re first diagnosed with MS. Can you talk about that moment when you get your call from the primary physician and then later the neurologist? What went through your mind at that moment?

Diagnosis – FinallyDanny: I had been feeling that something was wrong. We had just moved to Boston, and I was working at Boston Children’s. I had found a really good primary care physician. I kept saying to her, “Something is wrong.” She took me seriously and sent me to different specialists. Mostly, they just said, “Nah, nah, nah.” Finally, she said, “Oh, screw it. Let’s just get a brain scan.” She ordered the brain scan, not the neurologists or the whatever specialists. It was obvious that I had it. So she called and said, “OK, I need you to sit down.” I had this office that was like a closet with four people in it. There was no privacy. But we were right by a garden. So I went out in the garden and sat on a bench. She said, “OK, here’s what I found.” At first, I was so relieved. Like, it’s a diagnosis. It made sense. And then I’m a sort of delayed-reaction kind of person with bad news. And then I was like, “Oh, my God, what does this mean?” And my wife was like, “Oh, she was pretty upset.” But I’m more of an, “OK, get over it. Now what? What am I going to do now? OK, now I know this. All right, what do I have to do?”

Swiss Cheese BrainMark: MS comes in many shapes and sizes, as you’ve told me. Can you share a bit with the audience about your specific version and how it impacts you daily?

Danny: Yes. MS is really what’s called demyelination of nerve fibers. So it means the coating on the fibers, which transmits the nerve pulse across that fiber. It messes it up. And you can have that in your brain, in your spinal cord, and in your optic nerve. And I have it. It’s in my brain and my cervical spine, and a little bit in my optic nerve. But it really depends on where it is, which is why it’s such a general term. When you look at my brain scan, when I first saw it, it looked to me like Swiss cheese. What I mean is there were these little black dots and little white dots in different places. And it’s a 3D image that you’re looking through on the computer screen. And the doctor said the white ones are active lesions. A lesion is an inflammatory demyelinating process. And the black dots are where it’s gone, and that debris has been reabsorbed. And it just leaves a space that doesn’t show on a scan. And so, probably my biggest effect is that my left leg is kind of withered. My right leg is much bigger than my left because it doesn’t have the same innervation. I have foot drop. And when I’m sitting, I cannot raise my knee. Really, I can’t raise either knee when I’m sitting. Then there’s a little bit of proprioception, like, “Where is my body?” And sometimes I’m not sure, which then contributes to balance issues. So when I fall, it’s often related to the weakness and the proprioception. It affects my bladder. It affects my vision. I have double vision. Really annoying when you’re playing music. What else? There are other things, but those are the big ones.

Had It for Twenty-Five YearsMark: One of the surprises that your neurologist shared with you was how long he thought you might have had MS before it was diagnosed.

Danny: Yes, crazy. He’s going, here, look at this and look at this and look at this. And see this and this? You’ve had this for at least 25 years. And I’m like, oh, my God. But my wife, like right away, she was like, “Do you remember when we lived in West Virginia, and you went over to the neighbor’s house to take a bath, and you called me because you couldn’t get out of the bathtub? Ah, being in that hot water, that’s hard for me. We liked biking, and I would just fall off my bike. And one time, when I was living in upstate New York, I just fell into a ditch. And the person living at the house came running out. And every time I had these episodes, which happened at least four times a year, but often more, I would get a cardiac workup because my father died when I was 18. He was 45 of his second heart attack. So they would just give me a full cardiac workup. The episode was over by the first test they did, and it was always negative. It’s in my record. I have severe heart disease, but my heart is fine. And so it was like, OK, we can start seeing this. This was probably a relapse, an exacerbation of the MS.

When You Know One, You Know OneMark: Now, if you back away from it, what’s the biggest misconception that people may have about MS?

Danny: It’s like when you know one person with MS, you know one person with MS. People have an experience with themselves, a family member, a neighbor, whoever. So, when I say I have MS, that’s what they picture.

Movement RegimenMark: Can you talk about your daily physical regimen and the importance of movement?

Danny: Oh, yeah. I’m a nurse with a background in physical rehabilitation. When I was in nursing school, I worked at the Detroit Rehabilitation Institute. I work with people with spinal cord injuries, strokes, and severe arthritis. In those situations, the danger was not moving. What I learned really quickly is that I could have just said, oh, my God, this is awful and stopped moving. But I know that’s just the wrong thing. You’ve got to keep moving. I find I’m a pretty healthy person. I don’t get colds and the flu that often. Stuff like that. I’ve only had several minor surgeries. I haven’t been an inpatient, but I know that when I have a relapse, I don’t move as much. It takes some time to recover. So when you talk about a regimen, the first one is: I try to get 3,500 steps a day, and I average about 3,650 over the year. There are some days when it’s lower because, you know, it’s cold and icy and the wind’s blowing. And so I don’t walk as much. But even when I’m in a lot of pain because of something that’s bothering me, I still get out there. And if I have to use the walker instead of my sticks and it’s only going out the driveway for a half a block, I’ll do that. So my routine is to do a stretch every other day. I like to set myself up for success. And I know that if I have to do something all the time, I just won’t make it. So my rule is: I have to do everything, except walking, every other day. I do more than that, but I’m satisfied with myself. But I do stretch. I do balance work. I do a little strength work, mostly my upper body, because I do squats, and I can pick up my wheelchair, which weighs 60 pounds. And if it’s really controlled, like it’s folded and up against the car’s back bumper, I can squat and lift it. As long as I’m leaning on the car, if I have to step back, I would fall. But I need my squats, right? And I need my upper body to be strong. So my upper body stuff and my squats, I do those regularly.

Mark: Interestingly enough, that’s probably when I first thought, Danny really is an athlete, because when I was picking you up at the Hilton, going to the game, and we were loading the wheelchair into the back of my SUV, you were helping out. And I was like, okay, now, obviously not your first rodeo, but I was impressed with the strength and the agility and everything that went into that.

Danny: And it took a while, man. It took a while. I mean, and that’s where, like my wife is great because she’ll do this stuff with me, and then she’s there to spot me because when you’re training, you do it wrong and you got to figure out the right way. And oh, this is not a day I can do it. And I want to be able to do stuff myself because that’s my mobility, because I’m not always going to have somebody. And I’m not afraid to call somebody who’s walking by. Could you give me a hand? People are mostly nice and will help. But I need to be able to do it because who knows?

Blessed with OptimismMark: I think one of your superpowers is a really positive, can-do, optimistic attitude. Were that not the case, if somebody was just in the dumps mentally about having MS, that could lead to anxiety, depression, staying inside, not getting out, not moving, and exacerbating the situation. And to the point you just made, even when I saw it with you that one night, when needed, you were asking for help. But that’s not everybody. If you’re introverted and feel anxious about asking for assistance, I have to think that a chronic illness like this is that much more debilitating.

Managing HelpDanny: I agree with that. I think it’s about figuring out how to ask for help and accept it. Now, there’s help that’s awful. And I would say that when I fall and somebody wants to grab my arm and pull me up, that’s just going to mess me up. But if I could say, OK, I’ve fallen, and somebody said, oh, how can I help you? And I’d say, will you stand there and spot me? And I can get up by myself most of the time. So let me try. Or when we were in Cuba, for example, the guy who was our driver. We had a van that could handle 10 people. And this guy was amazing because right away he figured out the best way to help me. So getting in and out, like where I would grab his forearm, he would grab my forearm. And so both of us would help me get out of the van. He knew to let me pull myself, and he’d spot me in the back. And then he would even know how to fold my chair. And when he dropped us off somewhere, he would say, no, look out for whatever. And he would alert me to something that was coming. That’s amazing help. And he didn’t speak English, and I didn’t speak Spanish. And he was some of the best help I’ve ever received.

The TeamMark: That’s great. Can you talk about the extended team that helps you regularly?

Danny: The most important members of my team are my wife, my sons, and my grandkids because they’re there every day. They know me best. They’ve lived with this for a long time. But then there’s the medical. My primary care physician is my main physician, and I also have a urologist, a cardiologist, and an ophthalmologist. I have a physical therapist, and my wife is an occupational therapist. I get massages every couple of weeks, so I have two massage therapists. One thing that happens to me is that everything freezes up. I can see that everything gets really tight. I have acupuncture and chiropractic. They all play a role. I work really hard to find the right people. Hey, I’m not easy to handle. You see, I’m this energetic guy who likes to run the show.

Selective Decision-MakingMark: You’re also a health care professional, right? So you might be more difficult to deal with than some.

Danny: But on the other hand, having a chronic illness is like putting in a kitchen. When you’re putting in a kitchen, you have to make nonstop decisions. What kind of paneling is it going to be? What kind of knobs is it going to be? The sliders, the floor, it’s endless. I feel like having a chronic illness is the same thing. There are always decisions to make, and it’s exhausting. But by having a team I trust, and one that knows certain things are important to me, I want to progress as slowly as possible. I don’t want to mess with my pathological optimism. I want to play my saxophone. And that’s what I care about. So then when my neurologist wants me to do something, I’ll ask him stuff. Like, I just saw him, and I take these infusions twice a year. It’s a five-hour infusion, and each dose costs $100,000. It’s insane. And I haven’t had a relapse in six years. And I’m 73. And we were talking, should we continue? And I said, “So what do you think?” And he said, “I’m not sure if the reason you’re doing so well is the infusion or everything you’re doing?” We went through all the risks of the infusion, and then we decided that everything seemed OK. There’s stuff, but it’s minor. For me, I look at it and ask, “Is it annoying?” Is it moderately annoying, seriously annoying, or disabling? And it was in the moderately annoying range. And I just said, that’s what he thinks. That’s good for me. Or my wife says, “You need to do the boots with cleats today.” Okay, I’ll do it. You just let people make a lot of decisions for you.

And Then There’s MusicMark: You just mentioned your sax. And I know music is a huge passion in your life. How did MS change the way that you played the sax?

Danny: Funny enough, one of the first signs that I knew something was really wrong was when I was playing in this college jazz band. I wasn’t in college, and I was in the front row, and I had to stand and do a solo. I knocked the stand off the stage. The music went flying. I thought, what a klutz. It happened again, and I’m like, this is not OK. But when I got diagnosed, the first neurologist I saw, who did see the Swiss cheese stuff, said he had nothing better for me than playing the saxophone because I have intercostal muscles, the muscles between the ribs that help you breathe. I have involvement there. I’m playing this baritone saxophone, which takes a lot of air. I have dexterity issues, and these are big, heavy keys. He said, for that, there’s nothing better. And music makes new pathways in your brain. So now, when I go to the neurologist, it’s a different neurologist, but he goes, “Have you fallen and are you still playing the saxophone?” Those are outcomes we manage first. There did come a time a few years ago. I’m looking at my horn now. It’s big. My horn is four feet high, maybe a little higher. It weighs maybe 20 pounds, and I couldn’t hold it. I have a strap around my neck, and I tried to go through all these different kinds of harnesses and straps, but I just couldn’t. So my music teacher found this company in Germany that made me a stand you can set up and raise and lower, so I can stand or sit and play. The problem with that is that, you know, I’ve got all this stuff to carry. In the bands I play in, the people are my roadies. They’re lovely. I can carry stuff and put it in the car, but I can’t really take it very far. And I certainly can’t carry it up and down the stairs. It’s like anything. I’ve had to adapt.

Training to Travel with AbilitiesMark: Speaking of adaptation, you’re an active traveler. What kind of accommodations do you make typically before you go on a big trip, whether that’s Camino de Santiago or a Belize trip that’s coming up?

Danny: Yes. I created a video of my capabilities because when you hear that somebody is disabled, what do you think of? Blind? Are they deaf? Can they not walk? So I made a video of me with my, I call them my sticks, but they’re forearm crutches. I go down three steps with my forearm crutches. Then I pull my wheelchair out of the garage, sit in it, use the joystick, and drive to the car. Then my wife and I put the wheelchair in the car. So whenever we’ve traveled, I’ve sent that YouTube link because we’ve been on the Camino de Santiago. We did that twice and are going to Belize. We’ve sent that video. When we went to the Camino the last time, it was like 270 miles for the whole thing. And my fellow walkers, 70 or older, did 270 of that. And I did 70 in my chair. So it was like, I can maybe do five to seven miles, assuming there are no physical barriers.

Reading the RoomMark: In that vein, I’m assuming that your perspective on toughness and fortitude has changed through the years, correct?

Danny: Yes.

Mark: And how would you define a win in today’s world?

Danny: A win would be people recognizing that disability takes many forms, and that some disabilities are visible while others aren’t. And it’s not always the same. If I were a paraplegic, I would always be a paraplegic. But with MS, there are things I can’t do, and there are things I can do sometimes. So I think a win would be increased awareness of that and the ability to conduct a quick assessment. It’s like reading the room. And people being more comfortable saying, oh, how can I help you? Or instead of making whatever assumptions. Now, I don’t know what that has to do with fortitude, which was your question.

Superpower and the 2-Minute BitchMark: I think in a related vein, here’s another question. So athletes both train their minds and their bodies. What mental skills have you had to develop to strengthen yourself?

Danny: Well, I think accepting what is is huge. Another thing I had to do, part of the downside of this pathological optimism, is what some people might call happy horseshit. You know what I mean? It’s just being positive and ridiculous. So I found that one of the things I had to learn to do was be comfortable with a two-minute bitch. I just need somebody to listen to me. What was I? Life sucks. I hate this. I hate that. And then two minutes is a long time. And my rule for myself is that you can’t repeat yourself. It’s got to be about something different every breath. But what really helped me mentally was not to be this happy horseshit. Because it does suck, it sucks big time, big time. I wish I did not have this, but hey, I do.

Pushing Through?Mark: Well, it feels like you’re a problem solver at heart, but there have to be moments where it gets a little too much. And in that vein, when you’re having a tough day, and you have to push through fatigue or discomfort, when do you know when to listen to your body and pull back versus just busting ahead?

Danny: That’s a problem for me because often, as I said, I like to walk, right? I try to get my steps. And sometimes I’ll do too much. And my wife will say, well, let’s just sit down because I recover quickly. But no, I just want to keep going, get it over with, and then crash. So I have a little trouble with that. And then some of it, it doesn’t matter what I think. I just can’t. So then that’s a whole other training issue: what do you do when you can’t? It isn’t always safe to just stop. So in a way, I feel like when I travel, that’s when it’s really a problem because when I’m at home, my wife will go, oh, Danny, just go sit down. I can do this. Sit down.

Scouting it OutBut it’s scouts. Like, when I travel with people, they know I’m looking ahead. Oh, this route or this path is too narrow, or here’s a place you could rest. And my grandkids, ever since they were little, when they would just run off, their parents and my wife would be, wait, oh, they were with me. Opa, careful. You can’t cross the street right now, or whatever. You know what I mean? And now they’re teenagers, always looking out. Okay, there’s a place you could stop. No, you’re not going to be able to go there. Maybe you should go this way. You know what I mean?

Mark: They’re like attuned. And so that’s really wonderful. Among many things, you’re a diehard podcaster as well and have been doing it for years. Can you tell our listeners a little bit about your Health Hats podcast?

Health Hats, the PodcastDanny: Yes, it’s Health Hats, the podcast. And my spiel is that I know a little bit about a lot of health care and not a lot about that much. And what that means is I’ve been in many roles in health care. I’m a registered nurse. I’ve been a care partner to several families on their end-of-life journey. I’ve been a boss. I’ve led some electronic health record implementations. So I wear a lot of hats. And the thing that’s different about me is I wear them all at once. Most people wear one at a time. And I’m a musician, and music and travel are part of health. So, what I do is I explore, actually, what I’m interested in, this whole idea of best health, optimal function, like how do people do it? And what are the support systems? And what information is needed?

Mark: I’ll also include a link to the podcast in the show notes for those who want to follow along.

Build a TeamMark: Three final questions. First, if someone just received a life-changing diagnosis, what advice would you want to share with them?

Danny: Feel free to think how shitty it is and feel sorry for yourself for a few moments, and build a team. I think that’s the biggest thing. You can’t do this shit alone. The world is tough. And yeah, I don’t know. I couldn’t do it. Build a team.

Aggressive HelpMark: Related to that, my second question is for those friends and family members listening. How can they best help, and what should people stop doing?

Danny: I think what people should stop doing is aggressively helping, especially when it involves touching someone. Instead, ask, “How can I help you?” I think that’s really important. On the other hand, one of the things I learned was that I was a care partner to people at the end of their lives. One of them was my son, who died at 26. We would have these calls every week with Mike, my son, his girlfriend, her parents, and my other family. We would have a call every Friday, and we quickly discovered that it wasn’t enough to just talk about appointments, test results, and money. People wanted to help, so we had to figure out what help we needed or could use so we could respond. It’s a two-way thing. You have to be able to accept it. People are lovely and want to help. They don’t care. Bring home some ice cream. That’s fine. Or take me to a doctor’s appointment.

LegacyMark: Finally, I know how much you love your sons and grandsons. If we fast-forward 25 years, how do you hope they remember you?

Danny: Like they think about me now. I’m the cool Opa.

Mark: I think we can end on that one, Danny. This has been wonderful.

Danny: Thank you. Yeah, thank you so much. This has been fun.

Mark: Great. I love your insight, wisdom, and, of course, your sense of humor. And true pleasure talking to you as always. So thank you, Danny. Take care. Okay. Take care. Whether you’re training for a marathon, battling a chronic illness, or recovering from an injury, Danny’s story is a powerful reminder that progress doesn’t have to be meaningful. Sometimes the journey is measured in simple steps. Sometimes it’s measured in laughs or musical interludes. And sometimes it’s just measured in moving forward, taking the next step, you feel a bit overwhelmed. Life’s not easy, but true athletes are resilient, coachable, and resourceful. As always, thanks for listening. If this conversation with Danny resonated with you, please share it with someone who could use a dose of inspiration. Thanks, sports fans.

ReflectionSo, best health fans, like this story? We just got home from Belize. I’m preparing videos for distribution over the next month or so about our travels in Mayan history, snorkeling, cave tubing, lagoon exploring, tortilla making, and more. Training gave me the space and confidence! Check out Mark’s podcast, Heavy Hitter Sports. Link in the show notes.

Related episodes from Health Hats

Costa Rica – Travel with Abilities

Reprise: Camino de Santiago. Rejuvenated, Inspired #21 & 164

Artificial Intelligence in Podcast Production

Creative Commons Licensing

CC BY-NC-SA

BY: credit must be given to the creator. NC: Only noncommercial uses of the work are permitted.

SA: Adaptations must be shared under the same terms.

Please let me know. danny@health-hats.com. Material on this site created by others is theirs, and use follows their guidelines.

Disclaimer

The post If You Have a Body, You’re an Athlete: Training for MS first appeared on Danny van Leeuwen Health Hats.

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Trust: 120 episodes and still learning. This time: how we decide to act on health data. It’s messy. Let’s wade in together.

Summary

I’m going to spend the next few months connecting with you, my community—podcast and social media channel subscribers, followers, friends, and colleagues—focusing on TRUST. I’ll share nuggets I’ve learned, suggest prompts, ask and answer questions, and respond to others’ channels on trust.

Click here to view the printable newsletter with images. More readable than a transcript.

Contents

Please comment and ask questions:

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, TikTok to @healthhats
Substack
Patreon

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk
Leon van Leeuwen: editing and site management
Oscar van Leeuwen: video editing
Julia Higgins: Digit marketing therapy
Steve Heatherington: Help Desk and podcast production counseling
Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection
Claude, Perplexity, Auphonic, Descript, Grammarly, DaVinci

Podcast episode on YouTube

Inspired by and Grateful to: Amy Price, Christine Von Raesfeld, Laura Marcial, Tomas Moran, Marianne Hudgins

Photo Credits for Videos

Featured Image by Michael Chaffin

Referenced in episode

Mayer, R. C., Davis, J. H., & Schoorman, F. D. (1995). An integrative model of organizational trust. Academy of Management Review, 20(3), 709-734.

Schoorman, F. D., Mayer, R. C., & Davis, J. H. (2007). An integrative model of organizational trust: Past, present, and future. Academy of Management Review, 32(2), 344-354.

EpisodeThe Bottom LineI’m going to spend the next few months connecting with you, my community—podcast and social media channel subscribers, followers, friends, and colleagues—focusing on TRUST. I’ll share nuggets I’ve learned, suggest prompts, ask and answer questions, and respond to others’ channels on trust.

Everywhere and NowhereUnsurprisingly, the word of the year for me is TRUST. When has trust not been paramount in history? Never, I think. More than 120 of my 600+ episodes have included trust, with 25-30 primarily on the topic.

My mission is ‘Learn with people on the journey toward best health.’ Learning is built on trust. Embarking on a journey requires trust. Best health is an uncertain destination. Comfort with uncertainty entails trust. Decision-making is easier with trust.

Model of TrustResearchers break TRUST down into interpersonal trust—do I trust you? —and organizational trust—do I trust this hospital?—and then way up into societal trust—do I trust the healthcare system itself? There’s a 1995 model by Mayer, Davis, and Schoorman that keeps showing up in the research. They say trust boils down to three things: Can you do what you say you can do? Do you actually care about me? And do your actions match your words? Ability, benevolence, integrity. Simple framework, massive implications. There’s a 2007 update that looks back at what has happened in trust research since 1995. I especially bonded with sections on affect and emotion in trust, on distrust separate from trust, and on cross-cultural tensions.

Trust in SelfMissing from these articles is trust in myself. Do I trust my ability to manage my health and own my life? What a can of worms—self-knowledge. Understanding my risk tolerance, my culture, my history. I may be a trusting soul at heart, but I’ve been burned. I’m curious, but a skeptic. It affects trust. But I can control myself more than anything.

Comfort with uncertaintyI’m daunted by the stormy sea of trust. Gosh, I’m scared of water and a low-confidence swimmer. The sea of trust is massive, too much for me to get my brain around. I need a cove to focus on – boundaries. You know me. I can spin anywhere. No, Danny, focus.

I want to explore the trust we need to make health decisions. Think about it. Someone hands me my lab results—that’s data. How does that become information I trust enough to act on? My doctor says I need surgery—what makes me believe her? I’m looking at my health data, trying to figure out next steps—what combination of data quality, sensible interpretation, and relationship strength tips me toward yes or no?

I keep coming back to this intersection: a trustworthy self, trustworthy data, and a trustworthy person or source interpreting it for or with me. That’s the slice I want to dig into over the next few months. Not trust in general—trust in the specific moment when someone with a health concern must decide what to do next. What data matters? All of it? Some? Which part? What would you do with it? What approaches, tools, and methods do you use to clean it up and trust it?

Calculated RisksWhen exploring, I need to feel safe. I’ll take calculated risks, but I won’t set sail without a team, provisions, a destination, and a sextant (or other guiding tools).

What’s nextSo, what’s next? I’ll start with a Book Club format, well, not books. Too long. I don’t have the time – perhaps a story, a quote, a chart, a comment made, or an article. I’m going to partner with my buds, Laura Marcial, Amy Price, and Christine Von Raesfeld, on Substack. Maybe include LinkedIn and YouTube. Social media will have short or shorter content – Two to 15 minutes. Of course, my podcast will be included – combining shorter stuff. We’ll see how it goes. We’ll figure out some kind of rhythm—maybe we’ll even end up with something publishable. Who knows? That would be fun. Spread the wealth.

I’m depending on you to join me. Onward!

Related episodes from Health Hats

Letter: Trust Me, I’m Skeptical

Trust is Complicated: Person-First Safe Living in a Pandemic Part 3

Trust: Willing to be Vulnerable. Worth the Investment.

Artificial Intelligence in Podcast Production

Creative Commons Licensing

CC BY-NC-SA

BY: credit must be given to the creator. NC: Only noncommercial uses of the work are permitted.

SA: Adaptations must be shared under the same terms.

Please let me know. danny@health-hats.com. Material on this site created by others is theirs, and use follows their guidelines.

Disclaimer

The post Trust Me, I’m Deciding. When Data Meets Doubt. first appeared on Danny van Leeuwen Health Hats.

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Health Hats Danny celebrates 50 – years with his honey & pounds lost. With gratitude for privilege, & best health thru family, media, music, travel, & advocacy.

Summary

Think of 2025 as Danny’s Sofrito year—familiar and unexpected ingredients simmering together. The base: 50 years married, daily saxophone practice, steady MS management. The aromatics: Cuban jazz immersion, co-founding a Personal Health Data Bank, and celebrating with old friends on Bloom Mountain. The heat: losing 50 pounds, earning $150 as a “professional” musician, and learning from his grandsons.

What makes sofrito work is the slow sauté, the patient layering of flavors. Danny’s learning the same with music (leave white space), with health (five out of ten is excellent), and with AI (it changes the work but doesn’t replace Mom’s feedback). Between PCORI Board meetings, podcast production, band rehearsals, and startup strategy sessions, he’s discovered that retirement’s spicy complexity comes from knowing when to drop out, when to join the rhythm section, and when to let the energizing endorphins carry you through disturbing times. The recipe? Nap whenever and keep improvising.

Click here to view the printable newsletter with images. More readable than a transcript.

Contents

Please comment and ask questions:

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, TikTok to @healthhats
Substack
Patreon

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk
Leon van Leeuwen: editing and site management
Oscar van Leeuwen: video editing
Julia Higgins: Digit marketing therapy
Steve Heatherington: Help Desk and podcast production counseling
Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro and outro
Claude, Auphonic, Descript, Grammarly, DaVinci, Whisper Transcription

Podcast episode on YouTube

Inspired by and Grateful to: All of you!

Photo Credits for Videos

50th Anniversary images by Patti Harris, Rich Rieger, Jodi Buckingham, Ann Boland, Christine Higgins, and me

Swiss cheese image by Rahul Pugazhendi on Unsplash

Nourish image by Santiago Lacarta on Unsplash

Cuba images by Ann Boland, Richard Fish, Gisselle Perez, and me

Zoom images by Michael Chaffin and Steve Heatherington

Links and references

The Curse of an Aching Heart Music by Al Piantadosi, Lyrics by Henry Fink 1913 played by the Summer Street Stompers

https://health-hats.com/wp-content/uploads/2025/12/The-Curse-of-an-Aching-Heart-20251206.mp3Referenced in episode

Dan Fox and Morningside Studios, the Havana Music School, the Havana Jazz Festival

Lechuga Fresca Latin Band and Summer Street Stompers Dixieland Band

Research partnerships and participatory governance of AI

Personal Health Data Bank

https://goodlistening.org

EpisodeProemI love retirement. I have plenty to do on my own schedule. I can nap almost whenever I want. I‘m no better at saying no. Every day feels rich, although I don’t always know what day it is.

From Mom to AIMy podcast about best health continues to flourish and nourish. Thank you very much. I embrace the tension between creativity and productivity as I test new approaches and media. I published fifteen new episodes in 2025, plus 32 YouTube episodes, and countless social media shorts. What do you think of my new intro and outro? Grandsons Leon and Oscar encouraged me to update them. Leon has been updating my website, as a growing proportion of people access my back catalog. Both Leon and Oscar advise me on direction, content, and strategy, especially using social media. I meet regularly with my virtual, supportive, and challenging podcasting peeps. I enjoy experimenting with AI in production to find and create images and suggest brief descriptions and section headings. My favorite prompt is “Suggest three ironic titles, brief descriptions, and section headings, a tech-savvy teen would appreciate.” I rarely use the suggested responses, but I chuckle and take an unexpected path. AI does not make me more productive; it changes the work a tad. When I first started blogging, I would read draft episodes to my mom. Her feedback was more often helpful than AI’s. I miss my mom.

50 Years of Love and Privilege RoastedThe highlights of the year included celebrating our 50th wedding anniversary with old friends and my grandsons. Our son, Ruben, served as Master of Ceremonies. Nine people from our 1975 wedding joined us in July on Bloom Mountain in West Virginia to tell stories. We played the Dating Game and Danny and Ann Trivia. We, rather, I, got roasted. Oscar, Bruce Kimmel, and I played Simple Gifts on clarinet, bass, and baritone sax. We sang Simple Gifts at our wedding. Listeners and viewers, you can find full performances of this and other referenced tunes at the end of the podcast. Readers, click the links in the transcript or check the show notes.

Rolling in CubaAnother highlight was our week-long trip to Cuba for a music extravaganza. Dan Fox and Morningside Studios arranged it, and the Havana Music School hosted a week of the Havana Jazz Festival, daily lessons and ensemble work, culminating in a gig at a restaurant attended by many Havana musicians in town for the Festival. One of the tunes I recorded from the gig, “Sofrito” by Mongo Santamaria, has had 48,000 views on YouTube as of this writing. Before this, my most-viewed videos had 300 views. I’m grateful to Pachy Silveria for saxophone instruction and to Claudia Fumero and Gisselle Perez for their kindness in hosting. I worried about wheelchair access before we went to Cuba, but I needn’t have. My wheelchair was no more of a barrier there than it is anywhere else.

Too Many and Too Few HornsSpeaking of music, I’m playing in two bands now-Lechuga Fresca Latin Band and Summer Street Stompers Dixieland Band. Lechuga Fresca is reconstituting after several musicians moved on to other projects. I’m often the only horn player at rehearsals, while we have five horn players in the Summer Street Stompers. Too few and too many. Both situations have challenges. I’ve never had to hold my own in a band completely; usually, I hide behind someone. With a horn section, the music at its best is controlled cacophony. Too many horns are nuts. I’m learning to lay back, not hide, drop out sometimes, join the rhythm section other times, and leave more white space in my solos. I’m grateful to my teacher of 17 years, Jeff Harrington. Oscar and I figure that I must be a professional musician. While I don’t make a living playing, I made $150 this year. I average 1 hour a day with my music, and it feeds my soul and creates new pathways in my Swiss-cheese brain.

Best GovernanceI’m in my sixth year on the PCORI (Patient Centered Outcomes Research Institute) Board, focused on shifting the balance of power in community-research partnerships and in the participatory governance of AI used in research. If reappointed, I’ll enthusiastically re-up for another six years. PCORI has the best Board, leadership, and staff dynamics, as well as the output, of any organization I’ve participated with during my 50-year career. A nod to Jan Oldenburg for outstanding coaching that kept me focused on two goals at a time.

Game-Changing StartupA year ago, I would have said serving on the PCORI Board of Governors was the pinnacle of my career but let me tell you about my new career gig. For twenty-five years, I’ve worked with many collaboratives to advance patients’ abilities to turn their health data into useful information to make choices about their health and care. “Gimme my damn data” is a great slogan and first step, but success could be drinking dirty water out of a firehose. I virtually met my start-up partners, Tomas Moras and Marianne Hudgins in April and started working together in August. We’re seeking seed funding to build a Personal Health Data Bank, an owner-controlled health data bank that promotes individual data ownership, safety, security, and trust by storing personal health data from any source and using AI-assisted synthesis to serve the data owner.

Data owners’ needs vary. We might need our data for research participation, health data summarization, clinician visit prep, care coordination with family in whatever diaspora, or tracking data over the years, across health systems and locations. We have a sandbox where we are testing and enhancing existing open-source technology while we figure out participatory governance to address ethical, privacy, and usability issues. We favor a bottom-up rather than a top-down approach as we build community and services for owners and their trusted networks. I’m excited about the challenge of finding the smallest viable community that can use these Data Banks, with everyone making enough money to sustain the banks, service providers, and networks. No data broker would make money on the data. I’m revved up as I learn about a new audience – investors. The diversity of investors rivals that of any culture I’m new to.

OnwardI traveled to DC, Portland OR, New Orleans, and Colorado. In 2026, we booked a trip to Belize with Linda and Mike DeRosa. We are also planning a trip to Ireland and Wales with my brother-in-law, Paul Boland, I’ll be sharing more about my adventures on my podcast and social media.

Best Health NowOh, I almost forgot. My health is excellent, meaning I spend a decent share of time in a state of best health. Talked to a friend, Shel. How do you answer people when they ask how you are doing? On a scale of 1 to 10, with this administration, the best is a seven. Considering the annoyances of MS, that brings it down to a five. So, how are you doing? Five out of ten is best health. I lost 50 pounds this year after a Type II Diabetes diagnosis. Mobility remains steady, though I was slowing down before the weight loss. I rate symptoms as annoying, seriously annoying, or disabling. Episodes of disabling symptoms are rare and brief. I know how to handle most symptoms most of the time. I’m delighted with a five.

Endorphins and GratitudeI’m grateful for my health, my pathological optimism, my privilege, my honey, my grandkids, and my health team. I appreciate all of you – family, friends, and colleagues. You infuse me with energizing endorphins, the best antidote to fatigue. May you celebrate the energizing moments you find in these disturbing times. A https://goodlistening.org poet wrote this poem for me.

Related episodes from Health Hats

Afro-Cuban Jazz and Helping Hands: Cuba’s Accessible Beat

From Hot Jazz to Cold Nose: 2024 Health Hats Holiday Letter

Internal Fire of Best Health: Intuition, Mystery, Spirit, Soul

Artificial Intelligence in Podcast Production

Creative Commons Licensing

CC BY-NC-SA

BY: credit must be given to the creator. NC: Only noncommercial uses of the work are permitted.

SA: Adaptations must be shared under the same terms.

Please let me know. danny@health-hats.com. Material on this site created by others is theirs, and use follows their guidelines.

Disclaimer

The post Retirement Improvisation – Onward: 2025 Holiday Letter first appeared on Danny van Leeuwen Health Hats.

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Kirk & Lacy on shifting research funding away from federal grants: what happens to community partnerships when the money—and the rules—change?

Summary

Three Audiences, One Report Lacy Fabian and Kirk Knestis untangle a fundamental confusion in community health research: there are three distinct audiences with competing needs—funders want accountability, researchers want generalizable knowledge, and communities want immediate benefit. Current practice optimizes for the funder, producing deliverables that don’t help the people being served. The alternative isn’t “no strings attached” anarchy but rather honest negotiation about who benefits and who bears the burden of proof. Kirk’s revelation about resource allocation is stark: if one-third of evaluation budgets goes to

Click here to view the printable newsletter with images. More readable than a transcript.

Contents

Please comment and ask questions:

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, TikTok to @healthhats
Substack
Patreon

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk
Leon van Leeuwen: editing and site management
Oscar van Leeuwen: video editing
Julia Higgins: Digit marketing therapy
Steve Heatherington: Help Desk and podcast production counseling
Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection
Claude, Perplexity, Auphonic, Descript, Grammarly, DaVinci

Podcast episode on YouTube

Inspired by and Grateful to: Ronda Alexander, Eric Kettering, Robert Motley, Liz Salmi, Russell Bennett

Photo Credits for Videos

Data Party image by Erik Mclean on Unsplash

Pendulum image by Frames For Your Heart on Unsplash

Links and references

Lacy Fabian, PhD, is the founder of Make It Matter Program Consulting and Resources (makeitmatterprograms.com). She is a research psychologist with 20+ years of experience in the non-profit and local, state, and federal sectors who uses evidence and story to demonstrate impact that matters. She focuses on helping non-profits thrive by supporting them when they need it—whether through a strategy or funding pivot, streamlining processes, etc. She also works with foundations and donors to ensure their giving matters, while still allowing the recipient non-profits to maintain focus on their mission. When she isn’t making programs matter, she enjoys all things nature —from birdwatching to running —and is an avid reader.

Lacy Fabian’s Newsletter: Musings That Matter: Expansive Thinking About Humanity’s Problems

Kirk Knestis is an expert in data use planning, design, and capacity building, with experience helping industry, government, and education partners leverage data to solve difficult questions. Kirk is the Executive Director of a startup community nonprofit that offers affordable, responsive maintenance and repairs for wheelchairs and other personal mobility devices to northern Virginia residents. He was the founding principal of Evaluand LLC, a research and evaluation consulting firm providing customized data collection, analysis, and reporting solutions, primarily serving clients in industry, government, and education. The company specializes in external evaluation of grant-funded projects, study design reviews, advisory services, and capacity-building support to assist organizations in using data to answer complex questions.

Referenced in episode

Zanakis, S.H., Mandakovic, T., Gupta, S.K., Sahay, S., & Hong, S. (1995). “A review of program evaluation and fund allocation methods within the service and government sectors.” Socio-Economic Planning Sciences, Vol. 29, No. 1, March 1995, pp. 59-79.

This paywalled article presents a detailed analysis of 306 articles from 93 journals that review project/program evaluation, selection, and funding allocation methods in the service and government sectors.

EpisodeProemWhen I examine the relationships between health communities and researchers, I become curious about the power dynamics involved. Strong, equitable relationships depend on a balance of power. But what exactly are communities, and what does a power balance look like? The communities I picture are intentional, voluntary groups of people working together to achieve common goals—such as seeking, fixing, networking, championing, lobbying, or communicating for best health for each other. These groups can meet in person or virtually, and can be local or dispersed. A healthy power balance involves mutual respect, participatory decision-making, active listening, and a willingness to adapt and grow.

I always listen closely for connections between communities and health researchers. Connections that foster a learning culture, regardless of their perceived success. Please meet Lacy Fabian and Kirk Knestis, who have firsthand experience in building and maintaining equitable relationships, with whom I spoke in mid-September.

This transcript has been edited for clarity with help from Grammarly.

Lacy Fabian, PhD, is the founder of Make It Matter Program Consulting and Resources. She partners with non-profit, government, and federal organizations using evidence and storytelling to demonstrate impact and improve program results.

Kirk Knestis is an expert in data use planning, design, and capacity building. As Executive Director of a startup community nonprofit and founding principal of Evaluand LLC. He specializes in research, evaluation, and organizational data analysis for complex questions.

Introductions & Career TransitionsKirk Knestis: My name’s Kirk Knestis. Until just a few weeks ago, I ran a research and evaluation consulting firm, Evaluand LLC, outside Washington, DC. I’m in the process of transitioning to a new gig. I’ve started a non-profit here in Northern Virginia to provide mobile wheelchair and scooter service. Probably my last project, I suspect.

Health Hats: Your last thing, meaning you’re retiring.

Kirk Knestis: Yeah, it’s most of my work in the consulting gig was funded by federal programs, the National Science Foundation, the Department of Ed, the National Institutes of Health, and funding for most of the programs that I was working on through grantees has been pretty substantially curtailed in the last few months.

Rather than looking for a new research and evaluation gig, we’ve decided this is going to be something I can taper off and give back to the community a bit. Try something new and different, and keep me out of trouble.

Health Hats: Yeah, good luck with the latter. Lacy, introduce yourself, please.

Lacy Fabian: Hi, Lacy Fabian. Not very dissimilar from Kirk, I’ve made a change in the last few months. I worked at a large nonprofit for nearly 11 years, serving the Department of Health and Human Services. But now I am solo, working to consult with nonprofits and donors. The idea is that I would be their extra brain power when they need it.

It’s hard to find funding, grow, and do all the things nonprofits do without a bit of help now and then. I’m looking to provide that in a new chapter, a new career focus.

Health Hats: Why is this conversation happening now? Both Kirk and Lacy are going through significant changes as they move away from traditional grant-funded research and nonprofit hierarchies. They’re learning firsthand what doesn’t work and considering what might work instead—this isn’t just theory—it’s lived experience.

The Catalyst: Why This Conversation MattersHealth Hats: Lacy, we caught up after several years of working together on several projects. I’m really interested in community research partnerships. I’m interested in it because I think the research questions come from the communities rather than the researchers. It’s a fraught relationship between communities and researchers, often driven by power dynamics. I’m very interested in how to balance those dynamics. And I see some of this: a time of changing priorities and people looking at their gigs differently —what are the opportunities in this time of kind of chaos, and what are the significant social changes that often happen in times like this?
The Ideal State: Restoring Human ConnectionHealth Hats: In your experience, especially given all the recent transitions, what do you see as the ideal relationship between communities and researchers? What would an ideal state look like?

Lacy Fabian: One thing I was thinking about during my walk or run today, as I prepared for this conversation about equitable relationships and the power dynamics in this unique situation we’re in, is that I feel like we often romanticize the past instead of learning from it.

I believe learning from the past is very important. When I think about an ideal scenario, I feel like we’re moving further away from human solidarity and genuine connection. So, when considering those equitable relationships, it seems to me that it’s become harder to build genuine connections and stay true to our humanness. From a learning perspective, without romanticizing the past, one example I thought of is that, at least in the last 50 years, we’ve seen exponential growth in the amount of information available. That’s a concrete example we can point to. And I think that we, as a society, have many points where we could potentially connect. But recent research shows that’s not actually the case. Instead, we’re becoming more disconnected and finding it harder to connect. I believe that for our communities, even knowing how to engage with programs like what Kirk is working on is difficult.

Or even in my position, trying to identify programs that truly want to do right, take that pause, and make sure they aim to be equitable—particularly on the funder side—and not just engage in transactions or give less generously than they intend if they’re supporting programs.

But there are strings attached. I think all of this happens because we stop seeing each other as human beings; we lose those touchpoints. So, when I think about an ideal situation, I believe it involves restoring those connections, while more clearly and openly acknowledging the power dynamics we introduce and the different roles we assume in the ecosystem. We can’t expect those dynamics to be the same, or to neutralize their impact.

However, we can discuss these issues more openly and consistently and acknowledge that they might influence outcomes. So, in an ideal scenario, these are the kinds of things we should be working toward.

The Localization OpportunityHealth Hats: So Kirk, it strikes me listening to Lacy talk that there’s, in a way, the increased localization of this kind of work could lead to more relationships in the dynamic, whereas before, maybe it was. Things were too global. It was at an academic medical center and of national rather than local interest. What are your thoughts about any of that?

Kirk Knestis: Yeah, that’s an excellent question. First, I want to make sure I acknowledge Lacy’s description philosophically, from a value standpoint. I couldn’t put it any better myself. Certainly, that’s got to be at the core of this. Lacy and I know each other because we both served on the board of the Professional Evaluation Society on the East Coast of the United States, and practice of evaluation, evaluating policies and programs, and use of resources, and all the other things that we can look at with evidence, the root of that word is value, right? And by making the values that drive whatever we’re doing explicit, we’re much more likely to connect. At levels in, way, in ways that are actually valuable, a human being level, not a technician level. But to your question, Danny, a couple of things immediately leap out at me. One is that there was always. I was primarily federally funded, indirectly; there’s always been a real drive for highly rigorous, high-quality evaluation.

And what that oftentimes gets interpreted to mean is generalizable evaluation research. And so that tends to drive us toward quasi-experimental kinds of studies that require lots and lots of participants, validated instrumentation, and quantitative data. All of those things compromise our ability to really understand what’s going on for the people, right? For the real-life human stakeholders.

One thing that strikes me is that we could be as funding gets picked up. I’m being optimistic here that funding will be picked up by other sources, but let’s say the nonprofits get more involved programs that in the past and in the purview of the feds, we’re going to be freed of some of that, I hope, and be able to be more subjective, more mixed methods, more on the ground and kind of maturein the, dirt down and dirty out on the streets, learning what’s going on for real humans. As opposed to saying, “Nope, sorry, we can’t even ask whether this program works or how it works until we’ve got thousands and thousands of participants and we can do math about the outcomes.” So that’s one way I think that things might be changing.

Evidence + Story = ImpactOne of the big elements I like to focus on is the evidence—the kind of, so what the program is doing—but also the story. Making sure both of those things are combined to share the impact.

And one of the things that I think we aren’t great about, which kind of circles back to the whole topic about equitable relationships. I don’t often think we’re really great at acknowledging. Who our report outs are for

The Funder Issue: Who Is This Truly Benefiting?Health Hats: Yes, who’s the audience?

Lacy Fabian: Describing the kind of traditional format, I’m going to have thousands of participants, and then I’m going to be able to start to do really fancy math. That audience is a particular player who’s our funder. And they have different needs and different goals. So so many times, but that’s not the same as the people we’re actually trying to help. I think part of actually having equity in practice is pushing our funders to acknowledge that those reports are really just for them.

And what else are we doing for our other audiences, and how can we better uphold that with our limited resources? Do we really need that super fancy report that’s going to go on a shelf? And we talk about it a lot, but I think that’s the point. We’re still talking about it. And maybe now that our funding is shifting, it’s an excellent catalyst to start being smarter about who our audience is, what they need, and what’s best to share with them.

Dissemination, Implementation & Vested InterestHealth Hats: So, in a way, that’s not only do we need to think about who the work is for. How do we get it to those people? So how do we disseminate to those people? And then, what are the motivations for implementation? And it seems to me that if I have a vested interest in the answer to the question, I am more likely to share it and to try to figure out what the habits are—the changing habits that the research guides. What are some examples of this that you’ve, in your experience, that either you feel like you hit it like this, worked, or where you felt like we didn’t quite get there? So, what are your thoughts about some practical examples of that?

Kirk Knestis: I was laughing because I don’t have so many examples of the former. I’ve got lots of examples of the latter.

Health Hats: So start there.

Data Parties – The Concrete SolutionKirk Knestis: A good example of how I’ve done that in the past is when clients are willing to tolerate it. We call them different things over the years, like a data party. What we do is convene folks. We used to do it in person, face-to-face, but now that we’re dealing with people spread out across the country and connected virtually, these meetings can be done online. Instead of creating a report that just sits on a shelf or a thumb drive, I prefer to spend that time gathering and organizing the information we collect into a usable form for our audiences. This acts as a formative feedback process rather than just a summative benchmark. Here’s what we’ve learned. You share the information with those who contributed to it and benefit from it, and you ask for their thoughts. We’re observing that this line follows a certain path. Let’s discuss what that means or review all the feedback we received from this stakeholder group. It’s quite different from what we’ve heard from other stakeholders. What do you think is happening there? And let them help add value to the information as it moves from evidence to results.

Health Hats: This is the solution to the funder problem. Instead of writing reports for funders, Kirk brings together the actual stakeholders—the people who provided data and benefit from the program. They assist in interpreting the findings in real-time. It’s formative, not summative. It’s immediate, not shelved.

No Strings Attached: Reimagining Funder RelationshipsHealth Hats: I think it’s interesting that a thread through this is the role of the funder and the initiative’s governance. I remember that we worked on a couple of projects. I felt like the funder’s expectations were paramount, and the lessons we learned in the process were less important, which aligns with what we didn’t show. Publication bias or something. Sometimes in these initiatives, what’s most interesting is what didn’t work —and that’s not so, anyway. So how? So now that you’re looking forward to working with organizations that are trying to have questions answered, how is that shaping how you’re coaching about governance of these initiatives?

Like, where does that come in?

Lacy Fabian: Yeah. I think, if we’re talking about an ideal state, there are models, and it will be interesting to see how many organizations really want to consider it, but the idea of no-strings-attached funding. Doesn’t that sound nice, Kirk? The idea being that if you are the funding organization and you have the money, you have the power, you’re going to call the shots. In that way, is it really fair for you to come into an organization like something that Kirk has and start dictating the terms of that money? So, Kirk has to start jumping through the hoops of the final report and put together specific monthly send-ins for that funder. And he has to start doing these things well for that funder. What if we considered a situation where the funder even paid for support to do that for themselves? Maybe they have somebody who comes in, meets with Kirk, or just follows around, shadows the organization for a day or so, collects some information, and then reports it back.

But the idea is that the burden and the onus aren’t on Kirk and his staff. Because they’re trying to repair wheelchairs and imagining the types of models we’ve shifted. We’ve also left the power with Kirk and his organization, so they know how to serve their community best.

Again, we’ve put the onus back on the funder to answer their own questions that are their needs. I think that’s the part that we’re trying to tease out in the equity: who is this really serving? And if I’m giving to you, but I’m saying you have to provide me with this in return. Again, who’s that for, and is that really helping? Who needs their wheelchair service? And I think that’s the part we need to work harder at unpacking and asking ourselves. When we have these meetings, put out these funding notices, or consider donating to programs, those are the things we have to ask ourselves about and feel are part of our expectations.

Balancing Accountability and FlexibilityHealth Hats: Wow. What’s going through my mind is, I’m thinking, okay, I’m with PCORI. What do we do? We want valuable results. We do have expectations and parameters. Is there an ideal state? Those tensions are real and not going away. But there’s the question of how to structure it to maximize the value of the tension. Oh, man, I’m talking abstractly. I need help thinking about the people who are listening to this. How does somebody use this?

So let’s start with: for the researcher? What’s the mindset that’s a change for the researcher? What’s the mindset shift for the people, and for the funder? Let’s start with the researcher. Either of you pick that up. What do you think a researcher needs to do differently?

Kirk Knestis: I don’t mind having opinions about this. That’s a fascinating question, and I want to sort of preface what I’m getting ready to say. With this, I don’t think it’s necessary to assume that, to achieve the valuable things Lacy just described, we must completely abrogate all responsibility. I think it would be possible for someone to say, money, no strings attached. We’re never going to get the board/taxpayer/or whoever, for that. Importantly, too, is to clarify a couple of functions. I found that there are a couple of primary roles that are served by the evaluation or research of social services or health programs, for example. The first and simplest is the accountability layer. Did you do what you said you were going to do? That’s operational. That doesn’t take much time or energy, and it doesn’t place a heavy burden on program stakeholders. Put the burden on the program’s managers to track what’s happening and be accountable for what got done.

Health Hats: So like milestones along the way?

Kirk Knestis: Yes. But there are other ways, other dimensions to consider when we think about implementation. It’s not just the number of deliveries but also getting qualitative feedback from the folks receiving the services. So, you can say, yeah, we were on time, we had well-staffed facilities, and we provided the resources they needed. So that’s the second tier. The set of questions we have a lot more flexibility with at the next level. The so-what kind of questions, in turn, where we go from looking at this term bugs me, but I’ll use it anyway.

We’re looking at outputs—delivery measures of quantities and qualities—and we start talking about outcomes: persistent changes for the stakeholders of whatever is being delivered. Attitudes, understandings. Now, for health outcomes—whatever the measures are—we have much more latitude. Focus on answering questions about how we can improve delivery quality and quantity so that folks get the most immediate and largest benefit from it. And the only way we can really do that is with a short cycle. So do it, test it, measure it, improve it. Try it again, repeat, right? So that formative feedback, developmental kind of loop, we can spend a lot of time operating there, where we generally don’t, because we get distracted by the funder who says, “I need this level of evidence that the thing works, that it scales.”

Or that it demonstrates efficacy or effectiveness on a larger scale to prove it. I keep wanting to make quotas, right, to prove that it works well. How about focusing on helping it work for the people who are using it right now as a primary goal? And that can be done with no strings attached because it doesn’t require anything to be returned to the funder. It doesn’t require that deliverable. My last thought, and I’ll shut up.

Where the Money Actually GoesKirk Knestis: A study ages ago, and I wish I could find it again, Lacy. It was in one of the national publications, probably 30 years ago.

Health Hats: I am sure Lacy’s going to remember that.

Kirk Knestis: A pie chart illustrated how funds are allocated in a typical program evaluation, with about a third going to data collection and analysis, which adds value. Another third covers indirect costs, such as keeping the organization running, computers, and related expenses. The remaining third is used to generate reports, transforming the initial data into a tangible deliverable. If you take that third use much more wisely, I think you can accomplish the kind of things Lacy’s describing without, with, and still maintain accountability.

Health Hats: This is GOLD. The 1/3: 1/3: 1/3 breakdown is memorable, concrete, and makes the problem quantifiable. Once again, 1/3 each for data collection and analysis, keeping the organization alive, and writing reports.

The Pendulum SwingsLacy Fabian: And if I could add on to what Kirk had said, I think one of the things that comes up a lot in the human services research space where I am is this idea of the pendulum swing. It’s not as though we want to go from a space where there are a lot of expectations for the dollars, then swing over to one where there are none. That’s not the idea. Can we make sure we’re thinking about it intentionally and still providing the accountability? So, like Kirk said, it’s that pause: do we really need the reports, and do we really need the requirements that the funder has dictated that aren’t contributing to the organization’s mission?

In fact, we could argue that in many cases, they’re detracting from it. Do we really need that? Or could we change those expectations, or even talk to our funder, as per the Fundee, to see how they might better use this money if they were given more freedom, not to have to submit these reports or jump through these hoops?

And I believe that’s the part that restores that equity, too, because it’s not the funder coming in and dictating how things will go or how the money will be used. It’s about having a relational conversation, being intentional about what we’re asking for and how we’re using the resources and then being open to making adjustments.

And sometimes it’s just that experimentation: I think of it as, we’re going to try something different this time, we’re going to see if it works. If it doesn’t work, it probably won’t be the end of the world. If it does, we’ll probably learn something that will be helpful for next time. And I think there’s a lot of value in that as well.

Health Hats: Lacy’s ‘pendulum swing’ wisdom: not anarchy, but intentional. Not ‘no accountability’ but ‘accountability without burden-shifting.’ The move is from the funder dictating requirements to relational conversation. And crucially: willingness to experiment.

The Three Relationships: Funder, Researcher, CommunityHealth Hats: Back to the beginning—relationships. So, in a way, we haven’t really —what we’ve talked about is the relationship with funders.

Lacy Fabian: True.

Health Hats: What is the relationship between researchers and the community seeking answers? We’re considering three different types of relationships. I find it interesting that people call me about their frustrations with the process, and I ask, “Have you spoken with the program officer?” Have you discussed the struggles you’re facing? Often, they haven’t or simply don’t think to. What do you think they’re paid for? They’re there to collaborate with you. What about the relationships between those seeking answers and those studying them—the communities and the researchers? How does that fit into this?

Kirk Knestis: I’d like to hear from Lacy first on this one, because she’s much more tied into the community than the communities I have been in my recent practices.

Maintaining AgencyHealth Hats: I want to wrap up, and so if. Thinking about people listening to this conversation, what do you think is key that people should take away from this that’ll, in, in either of the three groups we’ve been talking about, what is a lesson that would be helpful for them to take away from this conversation?

Lacy Fabian: I think that it’s important for the individual always to remember their agency. In their engagements. And so I know when I’m a person in the audience, listening to these types of things, it can feel very overwhelming again to figure out what’s enough, where to start, and how to do it without making a big mistake. I think that all of those things are valid. Most of us in our professional lives who are likely listening to this, we show up at meetings, we take notes. We’re chatting with people, engaging with professional colleagues, or connecting with the community. And I think that we can continue to be intentional with those engagements and take that reflective pause before them to think about what we’re bringing. So if we’re coming into that program with our research hat on, or with our funder hat on, what are we bringing to the table that might make it hard for the person on the other side to have an equitable conversation with us? If you’re worried about whether you’ll be able to keep your program alive and get that check, that’s not a balanced conversation. And so if you are the funder coming in, what can you do to put that at ease or acknowledge it? Suppose you are the person in the community who goes into someone’s home and sees them in a really vulnerable position, with limited access to healthcare services or the things they need. What can you do to center that person, still like in their humanity, and not just this one problem space? And that they’re just this problem because that’s, I think, where we go astray and we lose ourselves and lose our solidarity and connection.

So I would just ask that people think about those moments as much as they can. Obviously, things are busy and we get caught up, but finding those moments to pause, and I think it can have that snowball effect in a good way, where it builds and we see those opportunities, and other people see it and they go, Huh, that was a neat way to do it. Maybe I’ll try that too.

Listen and LearnHealth Hats: Thank you. Kirk.

Kirk Knestis: Yeah. A hundred percent. I’m having a tough time finding anything to disagree with what Lacy is sharing. And so I’m tempted just to say, “Yeah, what Lacy said.” But I think it’s important that, in addition to owning one’s agency and taking responsibility for one’s own self, one stands up for one’s own interests.

At the same time, that person has to acknowledge that everybody else knows that the three legs of that stool I described earlier have to do the same thing, right? Yeah. So, it’s about a complicated social contract among all those different groups. When the researchers talk to the program participant, they must acknowledge the value of each person’s role in the conversation.

And when I, as the new nonprofit manager, am talking to funders, I’ve got to make sure I understand that I’ve got an equal obligation to stand up for my program, my stakeholders, and the ideals that are driving what I’m doing. But at the same time, similarly, respecting the commitment obligation that the funder has made. Because it never stops. The web gets bigger and bigger, right? I had a lovely conversation with a development professional at a community foundation today. And they helped me remember that they are reflecting the interests and wishes of different donor groups or individuals, and there’s got to be a lot of back-and-forth at the end of the day.

I keep coming back to communication and just the importance of being able to say, okay, we’re talking about, in our case, mobility. That means this. Are we clear? Everybody’s on the same page. Okay, good. Why is that important? We think that if that gets better, these things will, too. Oh, have you thought about this thing over here? Yeah, but that’s not really our deal, right? So having those conversations so that everybody is using the same lingo and pulling in the same direction, I think, could have a significant effect on all of those relationships.

Health Hats: Here’s my list from the listening agency, fear, mistake, tolerance, grace, continual Learning, communication, transparency.

Kirk Knestis: and equal dollops of tolerance for ambiguity and distrust of ambiguity. Yes, there you go. I think that’s a pretty good list, Danny.

Lacy Fabian: It’s a good list to live by.

Health Hats: Thank you. I appreciate this.

ReflectionEveryone in a relationship faces power dynamics – who’s in control and who’s not? These dynamics affect trust and the relationship’s overall value, and they can shift from moment to moment. Changing dynamics takes mindfulness and intention. The community wanting answers, the researcher seeking evidence-based answers, and those funding the studies, have a complex relationship. Before this conversation, I focused on the community-research partnership, forgetting it was a triad, not a dyad.

The Central Paradox: We have exponentially more information at our disposal for research, yet we’re becoming more disconnected. Lacy identifies this as the core problem: we’ve stopped seeing each other as human beings and lost the touchpoints that enable genuine collaboration—when connection matters most. This is true for any relationship.

The Hidden Cost Structure Kirk’s 1/3:1/3:1/3 breakdown is golden—one-third for data collection and analysis (adds value), one-third for organizational operations, and one-third for reports (mostly shelf-ware). The key takeaway: we’re allocating one-third of resources to deliverables that don’t directly benefit the people we’re trying to help. Perhaps more of the pie could be spent on sharing and using results.

Three Different “Utilities” Are Competing Kirk explains what most evaluation frameworks hide: funder utility (accountability), research utility (understanding models), and community utility (immediate benefit) are fundamentally different. Until you specify which one you’re serving, you’re likely to disappoint two of the three audiences.

Data Parties Solve the Funder Problem Pragmatically. Rather than choosing between accountability and flexibility, data parties and face-to-face analysis let stakeholders interpret findings in real time – the data party. I love that visual. It’s formative, not summative. It’s relational, not transactional.

The Funding Question Reverses the Power Dynamic. Currently, funders place the burden of proving impact on programs through monthly reports and compliance documentation. Lacy’s alternative is simpler: what if the funder hired someone to observe the program, gather the information, and report back? This allows the program to stay focused on its mission while the funder gains the accountability they need. But the structure shifts—the program no longer reports to the funder; instead, the funder learns from the program. That’s the difference between equity as a theory and equity as built-in.

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Healthcare AI isn’t a tech problem—it’s a mirror reflecting how our health system already fails. Uncomfortable truths from Datapalooza 2025.

Summary

We’re asking the wrong questions about AI in healthcare. Instead of debating whether it’s good or bad, we need to examine the system-eating-its-tail contradictions we’ve created: locking away vital data so AI learns from everything except what matters most, demanding transparency from inherently secretive companies, and fearing tools could make us lazy instead of more capable. Privacy teams protect data, tech companies build tools, regulators write rules—everyone’s doing their part, but no one steps back to see the whole dysfunctional picture. AI in healthcare isn’t a technology problem; it’s a mirror reflecting how our health system already falls short with privacy rules that hinder progress, design processes that exclude patients, and institutions that fear transparency more than mediocrity. The real question is whether we’re brave enough to fix these underlying problems that AI makes impossible to ignore.

Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below.

Contents

Table of Contents

Toggle Episode + Proem + Paradox, Irony, Catch 22 + Burying the Treasure to Keep It Safe + Bias, Treating the Chart, Not the Patient * Circular Dependence, Chasing Your Tail + It Doesn’t Have to Make Sense. * Throwing Out the Baby with the Bathwater * Clear as Mud * Redistricting to Democratize * Humanize Through the Looking Glass * Driving while looking into the Rearview Mirror * A Million Interns Working for You + What Keeps Me Up at Night About AI? + Reflection + Related episodes from Health Hats Please comment and ask questions:*

at the comment section at the bottom of the show notes
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DM on Instagram, TikTok to @healthhats

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk
Leon van Leeuwen: editing and site management
Oscar van Leeuwen: video editing
Julia Higgins: Digit marketing therapy
Steve Heatherington: Help Desk and podcast production counseling
Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection
Claude, Perplexity, Auphonic, Descript, Grammarly, DaVinci

Podcast episode on YouTube

Inspired by and Grateful to:

Christine Von Raesfeld, Mike Mittleman, Ame Sanders, Mark Hochgesang, Kathy Cocks, Eric Kettering, Steve Labkoff, Laura Marcial, Amy Price, Eric Pinaud, Emily Hadley.

Links and references

Academy Health’s Datapalooza 2025 Innovation Unfiltered: Evidence, Value, and the Real-World Journey of Transforming Health Care

Tableau a visual analytics platform

Practical AI in Healthcare podcast hosted by Steven Labkoff, MD

EpisodeProemHere’s the thing about AI in healthcare—it’s like that friend who offers to help you move, then shows up with a sports car. The Iron Woman meant well, but it doesn’t quite meet your actual needs. I spent September 5th at Academy Health’s 2025 Datapalooza conference about AI in healthcare, ‘Innovation Unfiltered: Evidence, Value, and the Real-World Journey of Transforming Health Care. a is Academy Health’s strongest conference for people with lived experience. I’m grateful to Academy Health for providing me with a press pass, which enabled me to attend the conference.

I talked to attendees about how they use AI in their work and what keeps them up at night about AI. I recorded some of those conversations and the panels I attended. When I listened to the raw footage, I heard terrible recordings filled with crowd noise and loud table chatter, like dirty water spraying out of a firehose. Aghast, I thought, what is the story here? I was stumped. How can I make sense of this? I had to deliver something.

So, here’s how I use AI in my work as a podcaster/vlogger. I used the Auphonic app to clean up the audio and remove noise, and then the Descript app to create transcripts of all the recordings. I went into my Claude podcast Project (a Project is an ongoing thread with everything I’ve done with Claude for my podcast over the past three months). I attached the transcripts and prompted the AI platform to identify themes. OK, that was helpful, but dull. So, I prompted Claude to think like a tech-savvy teen with a sense of humor. Eureka! Now we’re getting somewhere. I edited heavily and then prompted Claude to identify clips of speakers that illustrated the themes. I used the Perplexity app for research. Finally, I did the last written edit with a polish from the Grammarly app.

For audio, I returned to the Descript app, found the recommended clips, and extracted them. Then I recorded a video of myself, again using Descript. Compilation editing of the video was done with the DaVinci app. I should give production credit to Auphonic, Claude, Descript, Grammarly, Perplexity, and DaVinci.

Paradox, Irony, Catch 22Datapalooza 2025 showcased the health and care industry’s intense focus on Artificial Intelligence, whatever that means. My podcast acts as a Rosetta Stone to share the excitement of what I learn and deem important in my journey toward best health. How can we use AI safely? Let’s jump in with some lessons I learned.

Burying the Treasure to Keep It SafeThere’s a Data Privacy Paradox. The very health data that could benefit most from AI faces the most restrictions. Sushmita Macheri works with Medicare/Medicaid data—information about some of our most vulnerable populations—but can’t use AI to identify errors that could improve their care. Meanwhile, commercial entities are freely training AI on whatever data they can scrape. Therefore, the most sensitive and valuable healthcare data remains locked away while AI trains on potentially biased and unrepresentative information.

Sushmita Macheri: I work with healthcare, Medicare, and Medicaid data. I would like to upload the data so I can understand what errors I’m getting, but I’m unable to do that due to the restrictions we have at work. So, if I were able to upload one, let’s say, like a file that I am having errors with.

Health Hats: So, what kind of errors, like missing data, what are the errors that you notice?

Sushmita Macheri: I work with Tableau, mostly. Sometimes, if I’m having issues with a calculated field, I would like to upload that calculated field or the logic behind it in the calculator to try to understand what the error is, but I’m unable to do so. For me, it’s the biggest challenge.

Bias, Treating the Chart, Not the PatientBob Stevens points out a harsh irony: AI makes decisions about patients while being trained on data that intentionally excludes patient perspectives. The people most affected by AI decisions had the least input in training the systems. It’s like having a medical advisory board that leaves out doctors and patients, then questioning why the recommendations fail.

Bob Stevens: I am concerned about bias, as I mentioned, and that really worries me for two reasons. First, AI uses all available content, and as patients, we know that patient perspective content has not been well represented. Now, as AI starts making decisions based on this, all the content it has is just what’s available. It’s gathering it all. We haven’t been well represented in that process. So, it’s going to stay biased, right? Without patient information and the patient perspective, that creates a bias.

Bob Stevens: The second type of bias is related to how it’s designed. It’s not being general because it’s a technology, while they’re asking for patient input. There’s also bias in the design process because of who is doing the designing. So, you have two levels. One can be considered intentional, but the other is the accumulation of all this data that is there. We’re not represented in and haven’t been represented in. And how do we change that? The incremental change in the AI dataset is expected to take decades. What bothers me is that we are now relying on AI to assign a label that can then trigger a response or action.

Bob Stevens: That’s a high-risk moment, asking AI to make a decision that’s inherently high-risk. So what AI should always do is say. Here’s what I see. Now consider this when going in. And that brings us to the second part of a PCORnet study that I was involved in, which focused on the ER. And we had our electronic health record, and depending on how certain things, it was called a natural language processing process. And it looked at all these different things, and then based on that, it said, look to this, or looked to that, or looked to the other. It was those AI prompts that were based on the information from the electronic health record, which was then entered into the electronic health record. For that physician in the ER, they would then need to do certain things.

Circular Dependence, Chasing Your TailRolanda Clark hits on something profound: we need expertise to verify AI, yet AI is supposed to democratize expertise. She notes you “still have to educate yourself on how to check the information,” but if you already have that expertise, why do you need AI? And if you don’t have the expertise, how can you verify it? It’s a circular dependency that reveals AI’s limitations rather than its strengths.

Rolanda Clark: So, I’d say with AI, it’s not foolproof. You still have to educate yourself on how to verify the information that’s being presented, and that’s hard to do.

Health Hats: I’ve started saying, ‘What is wrong with your algorithm?’ Correct. And I get some kind stuff I didn’t think about that makes me wanna burrow in more.

Rolanda Clark: But I think that’s imperative. I think you must counter to mitigate this like bullshit.

Health Hats: Because you need to do that with experts anyway, because just because they’re experts in this little thing, they think they’re experts in way more.

Rolanda Clark: Exactly. As a patient advocate, I ask myself, ‘Why am I here?’ And then I realize I have common sense, and I can see when it’s bullshit. I definitely have value regardless. And you’ve had experiences that these organizations often don’t promote or share because they want to highlight all of the good.

Health Hats: So, transparency? That’s an honorable challenge. How do you be transparent, and how do you trust yourself? Push the boundaries of what you’re willing to be transparent about. For me to cross a line, I find it helpful to know who’s behind it, their motivation, how they make money, and what they’ve decided to keep protected. It’s the company’s value that you don’t want to share because it’s the secret sauce. You don’t want to share the recipe. Kentucky Fried Chicken, sure.

It Doesn’t Have to Make Sense.There’s a systemic irony where the most regulated industries that could benefit most from AI innovation are the least able to experiment with it. Healthcare organizations can’t risk HIPAA violations when exploring AI capabilities, so they often fall behind less-regulated sectors. Meanwhile, tech companies with no healthcare expertise are building health and care AI tools. I told my kids that life doesn’t have to make sense.

Grace Cordovana: In my advocacy work, I have the privilege of accompanying patients and their families to the point of care. I’ve been observing this anecdotally, essentially running my own informal study. I notice that when consent is asked for, it creates a really positive experience.

People are excited; patients and families are excited, and the doctor is excited, creating a spark of energy because now we can connect and talk as people. But what I’m noticing is that patients and families are now using their own tools, and they say, ‘That’s great, doc. You hit record, and I’m going to hit record too because I have my own tool.’

All hell breaks loose. Fractured relationship. Wait. We can’t do that. I, that’s not HIPAA compliant. We don’t have, hold on. No, we really can’t do that. I’m sorry. I’m not comfortable. Now, if this is a new patient encounter, it’s a major problem. Think about a new patient encounter where this patient has cancer, and this is their first appointment for a second opinion on an advanced cancer. And that’s how we’re starting off.

Throwing Out the Baby with the BathwaterMadhu Jalan’s concern about her son reveals another contradiction: we’re afraid AI will make us lazy, so we avoid using tools that could boost our productivity. But this avoidance might actually make us less competitive and adaptable. It’s like refusing to use spell check because you want to be a better speller—you end up writing less, not better.

Madhu Jalan: I have a 17-year-old, and I worry that he won’t learn the skills he needs to get along. Critical thinking, for example, involves writing. I worry that it will just make him lazy and completely redundant. That’s what I fear. He’s 17, so he still needs to learn how to learn and shouldn’t take the lazy way out. That’s what I worry about.

Clear as MudA delicious irony is that most people call for AI transparency, yet the most successful AI companies are among the muddiest. We want to understand how AI works, what data it uses, and how it makes decisions—but the companies we think have the best AI are the ones most protective of their “secret sauce.” The transparency advocates have the least power to enforce transparency.

Grace Cordovana: I encourage you if you haven’t read it or haven’t heard about it, take a look at the Light Collective AI Rights for Patients document, and it’s rooted in seven pillars. So, we boiled the ocean down to the crux of what was important for us from a patient’s perspective in that setting. Not just the foundation but looking at what the apex of ethics and the apex of good would look like for the people for whom all of these tools and technologies were being developed.

So, we answered the question, What do patients want, need, expect, and demand? And we landed on patient-led governance.

We committed ourselves to uphold patients’ transparency and self-determination. This includes identity, security, privacy, the right of action, and shared benefits. When you explore the document further, you’ll find all the specific details. I can assure you that each of us carefully reviewed every word and statement, and we all consented to the final version.

Patients can and will do good work, laying foundations that set a precedent for other stakeholders. This approach is divided. Designed to work in multi-stakeholder settings, public-private partnerships—which I will advocate for—should include public, private, and patient collaborations as we envision the future.

Redistricting to DemocratizeThere’s an ironic class dynamic where AI is supposed to democratize access to capabilities, but it actually requires significant skill to use effectively. It’s like learning a foreign language with characters that change shape with the weather. The people who most need AI help (like Yvonne McLean Florence learning scientific terms) are least able to verify its accuracy or notice its biases. Meanwhile, those most capable of using AI responsibly (like Madhu) are the most worried about its risks.

Yvonne McLean Florence: We attend specific conferences, and they put us in groups. We have to conduct research and learn new terms, so I use it for that. Help me understand the different scientific terminologies, as I don’t have a strong science background. Not that I have to be a professional when we’re at these conferences, but you do go there to learn.

Humanize Through the Looking GlassBob’s “Yogi the AI” example, which we heard earlier, reveals a graphic irony: we humanize AI to make it seem safer, while at the same time dehumanizing the process it’s meant to support. They give the AI a cute mascot name and treat it like a team member, but the underlying process reduces complex human problems to data patterns and algorithmic responses.

Bob Stevens: What they’ve done with the AI is that the AI person sits there as a member of the committee, and they actually name them and interact with them as if they’re sitting at the computer, as if they’re present. They usually do something silly. The name of the school is Bucknell Bears. So, if they’re the Bears, then they would end up naming AI, Yogi, and it becomes a real person sitting in that meeting, providing that input. But the key is, they’re just one person on the team? What is AI? Is one person on the team

Driving while looking into the Rearview MirrorThere’s an irony in the way we’re using 21st-century AI to perpetuate 20th-century biases. As Bob notes previously, changing the training data will “take decades,” meaning that today’s AI systems will continue to reflect historical inequities even as they are used to generate predictions to make forward-looking decisions about health, care, education, and social services.

A Million Interns Working for YouFinally, there’s Rolanda Clark’s observation about having “a million interns”—AI gives us unprecedented capability while making us more dependent. She can now act on creative ideas immediately, but what happens when the AI isn’t available? We gain productivity but lose resilience.

Rolanda Clark: I feel it’s so advantageous that I can come up with a thought, and that becomes the catalyst for so much more. Years ago, when I had these wonderful inklings, it was more imaginative because I usually didn’t have the time or energy to go full throttle. Now, you have a million interns digging for you.

What Keeps Me Up at Night About AI?I should answer my own question. At night, my apocalyptic mind worries about the corporatization of AI, the huge energy and water use that AI farms require, and the potential collapse of our financial stability when the AI bubble bursts.

ReflectionWe’re asking the wrong questions about AI in healthcare. Instead of debating whether it’s good or bad, safe or dangerous, we should examine the contradictions we’ve created: We lock away vital health data to protect people, so AI learns from everything except what matters most. We demand transparency from companies built on keeping secrets. We avoid tools that could make us more thoughtful because we fear becoming lazy.

People I talked to see some of these problems clearly. Sushmita can’t use AI to catch errors that could help vulnerable patients. Bob knows the bias is baked in from the start. Grace sees the HIPAA panic when patients want recording tools that their doctors already use. Rolanda understands that verifying AI requires expertise, undermining its promise of democratization.

So why aren’t we fixing this? Because each problem seems like someone else’s job. Privacy teams protect data. Tech companies build tools. Regulators write rules. Everyone’s doing their part, but no one is stepping back to realize, “Wait—the whole system is eating its own tail.”

AI in healthcare isn’t a technology problem. It’s a reflection of how our health system already falls short—privacy rules hinder progress, design processes exclude patients, and institutions fear transparency more than mediocrity.

The question isn’t whether we should use AI in healthcare. It’s whether we’re brave enough to fix the underlying problems that AI makes impossible to ignore.

See you at the PCORI 2025 Annual Meeting and the Camden Coalition’s Putting Care at the Center 2025 where I’ll keep asking uncomfortable questions.

Related episodes from Health Hats

AI: Neither Artificial nor Intelligent. Useful and Sobering

From Dick Tracy to AI: Out of Mind to Beyond Mind

Healthcare AI for Humans: Governance, Research, and Rights

Artificial Intelligence in Podcast Production

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SA: Adaptations must be shared under the same terms.

Please let me know. danny@health-hats.com. Material on this site created by others is theirs, and use follows their guidelines.

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Letters beat emails for trustworthiness. A gullible skeptic reflects on navigating trust in a 50-year marriage, and the energy cost of distrust.

Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below.

Please comment and ask questions:

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, TikTok to @healthhats

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk
Leon van Leeuwen: editing and site management
Oscar van Leeuwen: video editing
Julia Higgins: Digital marketing therapy
Steve Heatherington: Help Desk and podcast production counseling
Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection

Podcast episode on YouTube

EpisodeDear Listener and Reader,

I thought I’d start writing you letters. I miss letters. I send cards thanking my guests for their participation. People universally appreciate getting something via snail mail. But cards aren’t letters. They’re preformatted notes, where I just change the image and the name.

For giggles, I looked back at my very first blog post, July 31, 2012. It was a paragraph, a letter of sorts, short and simple, Improv and Best Health.

It’s taking me longer to produce each episode. So, no more frequently than once a month. So, why not a letter, short and sweet, from time to time?

Let’s start with trust. A letter feels more trustworthy than an email or a tweet. It’s signed; a person who writes a letter really wants to communicate and thinks about what they’re saying. So, perhaps, not a troll, more trustworthy. I always open letters.

My immediate, momentary, default reaction to almost anything is trust. My kids say I’m gullible. My next instant reaction is skepticism. I think about what’s not true about whatever. ‘AI is the solution to everything.’ What do you mean, everything? What is AI anyway? Like that.

I’ve been married for 50 years because at our core, my wife and I trust each other. We disagree, we misunderstand, we anger, I sulk. Yet we trust. On the other hand, I make stuff up. I misremember, create a story, and if it serves my purposes, stick with it or modify it as needed. My wife and grandkids are my fact-checkers. Still, we trust each other.

In my personal life, trust isn’t an on-or-off switch, all or nothing. Well, not usually. It’s a matter of degree; it’s about something. I trust that I can count on you to be there for me, unless you can’t. I trust that you’ll return my call, unless you’re hurt, don’t feel like it, or missed it.

Distrust sucks energy; be more careful with my words, self-censor, close my heart and mind.

I don’t expect to trust everybody or everything. When I do trust, it’s priceless.

Thanks for listening, I’ll be back.

Related episodes from Health Hats

Improv and Best Health

Trust is Complicated: Person-First Safe Living in a Pandemic Part 3

Trust: Willing to be Vulnerable. Worth the Investment.

Artificial Intelligence in Podcast Production

Creative Commons Licensing

CC BY-NC-SA

BY: credit must be given to the creator. NC: Only noncommercial uses of the work are permitted.

SA: Adaptations must be shared under the same terms.

Please let me know. danny@health-hats.com. Material on this site created by others is theirs, and use follows their guidelines.

Disclaimer

The post Letter: Trust Me, I’m Skeptical first appeared on Danny van Leeuwen Health Hats.

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Ronda Alexander on strategies to build inclusive health coalitions, manage power dynamics, center marginalized voices, & design sustainable governance.

Summary

In this episode of Health Hats, host Danny van Leeuwen talks with Ronda Alexander, a community health advocate and skilled facilitator, about the challenges of building and maintaining effective health coalitions. Alexander shares her journey from attending Detroit’s innovative Henry Ford Academy to working with Ford Partnership for Advanced Studies on workforce development, ultimately finding her calling at Vital Village Networks in Boston, where she spent seven years supporting national coalitions focused on health equity and early childhood wellbeing.

The conversation explores practical ways to manage power dynamics in cross-sector collaborations, from setting group norms that encourage real participation to designing decision-making processes that balance speed and sustainability. Alexander stresses the critical importance of listening to marginalized communities—those “furthest from opportunity”—and making sure they have real seats at decision-making tables, not just token representation.

Key insights include strategies for inclusive facilitation, such as incorporating quiet reflection time, small group discussions, and developing shared talking points that coalition members can take back to their organizations. Alexander advocates for proactive governance planning, comparing effective coalition building to chess strategy, where groups think “seven to eight moves down the board” to prepare for inevitable challenges.

The episode wraps up with Alexander’s call to action for health advocates: start by listening to the communities you want to serve, trust what people tell you about their needs, and design systems that place those most affected by health inequities in leadership and decision-making roles.

Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below.

Contents

Table of Contents

Toggle Episode + Proem + When did you first realize health was fragile? + Vital Village Network + Leadership, Impact, and Measurement + Data Storytelling + Community Research Collaboration + Funding + Convening, Facilitating + Getting Started at Henry Ford Academy + Ford Partnership for Advanced Studies + Teaching Takes a Village + Back to Detroit + Power Dynamics + Norms: Don’t Be a Jerk + First, Take a Few Seconds + Governance + Fast or Sustainable Decisions + Who are the Decision-makers? + Coalition Building + Talking Points + First, We Listen + Reflection + Related episodes from Health Hats Please comment and ask questions:*

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, TikTok to @healthhats

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk
Leon van Leeuwen: editing and site managementresil
Oscar van Leeuwen: video editing
Julia Higgins: Digit marketing therapy
Steve Heatherington: Help Desk and podcast production counseling
Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection, including Moe’s Blues for Proem and Reflection and Bill Evan’s Time Remembered for on-mic clips.

Podcast episode on YouTube

Inspired by and Grateful to:

Jan Oldenburg, Ellen Schultz, Tomas Moran, Susannah Fox, Betsy Neptune, Tania Marien

Links and references

Ronda Alexander

Henry Ford Academy

Henry Ford Museum and Greenfield Village

Ford Partnership for Advanced Studies

Vital Village Network

The Networks of Opportunity for Child Wellbeing

Dr. Renee Boynton-Jarrett

B’More for Healthy Babies

Marginalization refers to the inequality certain individuals face in society due to power imbalances built into our systems.

EpisodeProemLearn with People on the Journey toward Best Health. That’s my tagline. Let’s break it down. Learn with People implies endless curiosity with the people I travel with. Makes sense, I’m a networking extrovert who learns best with others. I prefer to travel with selected peeps (my team). Best health means accepting current circumstances and maximizing abilities, function, and spirit. So, we’re headed to a relatively better place, or at least the best possible health given whatever circumstances of the moment. A journey typically involves a destination (goals), tactics, and costs. The only guaranteed person on the team is me, you, or us, depending on whether it’s community health. Otherwise, the team is constantly changing. Who’s on the team, who’s off? Travel implies choices. Right, left, up, down, stop, rest, shop, eat. We can’t continue without making decisions together. Decision-making means power, group dynamics, and trust-governance. I broke all this down to get to governance, small group governance. After 50 years in health care, I’m still a student of governance. How do we, as mission-driven teams, attain our health goals with the power we possess? How do we collectively nurture healthy group dynamics with transparent and somewhat equitable power?

Just as my next-door neighbor, Ronda Alexander, was about to move, I learned that we shared an interest in community advocacy, governance, and power dynamics. And where was she moving? Back to Detroit—my old neighborhood. Small world. I took the opportunity to record a chat with Ronda before she left.

When did you first realize health was fragile?Ronda Alexander: It was becoming a parent. When you become a parent, you’re responsible for somebody else’s health. And up until then, I’ve been relatively healthy all my life. I had taken it for granted. But I think recognizing that I have this little human that I’m responsible for and have to make sure to keep them healthy, and that was a time when I was like, oh wait, health is, it’s tricky. It can change at any moment. My kiddo has nut allergies. They had an egg allergy, and they have asthma. And so, just things I hadn’t paid attention to before caused me to think about the environment around me. I think another thing that helped me realize health was fragile was recognizing the interconnection between physical health and the community and environment around you. When I started working for an organization focused on health equity, I learned that the social determinants of health — your community, your environment — have a significant impact on your health. And that answered so many questions for me.

Vital Village NetworkHealth Hats: Can you tell us about some of the organizations you’ve been working with?

Ronda Alexander: For the last seven years, up until about two months ago, I worked for an organization called Vital Village Networks, based out of Boston Medical Center. The focus of that organization is health equity and child wellbeing, but from a community leadership standpoint. Upon joining the team, I was responsible for building a national learning community called The Networks of Opportunity for Child Wellbeing, supporting and working with 10 coalitions from across the country across 10 states who were working on various aspects of health equity. We’re working on some specific innovations in their communities. Centered on prenatal to eight. So early, early childhood. Moving from preschool to elementary school, what does that mean for families, and what does it look like?

Leadership, Impact, and MeasurementSome coalitions focused on birth equity and birth justice, while others focused on community leadership or community grant-making. They all approached it from different lenses, but one key aspect was conducting research and measuring the impact of their work on their respective communities, as well as examining the collective impact.

In addition to helping them determine what we’ll work on together, we also need to figure out how to uplift the folks we’re saying we want to help and support, putting them at the center and in positions of leadership and power. We also asked, “What does it mean to measure that, and how do we design systems of measurement together?” We designed survey questions to understand how people would tell stories and what that process looked like, co-designing those evaluation tools.

Data StorytellingWe recognized that research and data can come from a variety of places. It can be stories, it can be numbers, it can be a combination of the two. And that folks in the community, folks most impacted, can have some ownership over that. We often would do workshops on building capacity, helping folks recognize that they have a story to tell, uplifting different kinds of data, storytelling, and using that data, whatever information they wanted to do to impact change, then to say, okay, we’re noticing this about our community based on this data. Now, how are we going to respond to it?

Community Research CollaborationHealth Hats: The organization that you worked for was a community-based organization integrated with a research team. Did that originate out of the community? Did that arise out of Boston Medical Center? What was the academic connection?

Ronda Alexander: The founding director of Vital Village Networks, Dr. Renee Boynton-Jarrett, was a pediatrician and a researcher by nature. I launched and founded the organization. First, we’re starting by listening to the community and understanding their stories and needs. The organization’s three pillars focused on community leadership and design. So, we listen to the community and bring people together. How do we work together? And then, how do we use data as a catalyst for the transformation? As the organization grew, it started to focus very locally in the Boston area. We have grown to have a national arm, which I mentioned earlier. But it also has a research and evaluation arm. So, designing and co-designing research efforts within the community. I was connected to it. I wasn’t necessarily doing a lot of that research, but I understood the value and how all those things fit together.

One project I worked on with a coalition in Baltimore, B’More for Healthy Babies, involved conducting research in their community. They were committed to making it community-based and designed in partnership with the community. So, the research and evaluation arm of the organization was then able to support them in doing that.

FundingHealth Hats: So, how was this funded?

Ronda Alexander: So the funding came from private foundations. The Robert Wood Johnson Foundation was a funder. The Doris Duke Foundation was a funder. We’ve worked on projects with the Pritzker Children’s Initiative of the Boston Foundation, which also funded parts of our work. Additionally, a significant portion of our funding came from private foundations, and the organization also pursued national grants. They partnered with the Department of Public Health: And so that’s where some of the research, some of the research was happening in partnership with the Department of Public Health.

Convening, FacilitatingHealth Hats: One more time about your role in that.

Ronda Alexander: Most of my role was facilitating, bringing folks together, and having the conversations. How do we have the conversations? Because often folks want to do work together and don’t necessarily know how or where to start. If you have a stake in the outcome, it’s tough to facilitate or to hold that space. And it brings a different level of power dynamics.

We were a convener. We would bring folks together, hold the space, help them design it, but then it was led by the community, by the coalition.

Health Hats: That sounds like fun.

Ronda Alexander: It was so much fun. Yeah. I learned so much in that work. I feel like it took my career. It took my perspective on the world and my approach to working with communities to a whole new level. I am just learning how to listen. The key was about listening, not having all the answers, and not trying to give them, which I think is key when it comes to working with the community. And when I say community, I’m referring to the folks who are most impacted, right? We should be listening. Anybody who’s working in the community should be listening to those folks. We should be centering their voices if we want to do things differently. And that was what that work was all about: helping them work together.

Getting Started at Henry Ford AcademyHealth Hats: Back up a little. I should have started with this, but whatever. Here we are. Tell us a little bit about your career that led up to this opportunity.

Ronda Alexander: I’m happy to do that. And I will say a little bit of it starts with high school. I was born and raised in Detroit. I attended one of the first charter schools in the metro Detroit area, the Henry Ford Academy, located within the Henry Ford Museum and Greenfield Village. This indoor-outdoor museum complex, where Henry Ford collected various Americana, was a unique setting sponsored mainly by Ford Motor Company. That would be important. So, in my junior year of high school, I decided to study abroad. Lived in Austria for a year and graduated from high school. Went on, and right after I graduated college, my advisor from a study abroad program reached out to me, and she said, ” Do you remember that high school you went to and Ford? And I was like, of course. Wasn’t that long ago.

Ford Partnership for Advanced StudiesShe mentioned that Ford has developed a curriculum based on that high school and is collaborating with individuals nationwide. They’re sponsoring students to study abroad and would appreciate it if someone connected to them could speak at a conference.

No problem. I’m always up for traveling and exploring new places. And so, I went to the conference. Said a few words. I don’t remember what I said. But the head of the program at that time, called Ford Partnership for Advanced Studies, said, Hey, I have a position open, and I would like to interview you right now. It all took a long time, so I ended up going to grad school. But they offered me an internship, which marked the beginning of my career with Ford, Ford Pass for short. It was about connecting business and industry, community and education, to foster community prosperity – workforce development. How do we think about the relevant industries? How are we building pipelines and preparing students? Preparing young people to go into the workforce and building skills, because what we’re hearing from employers is that people can technically do their jobs. Still, they lack skills in problem-solving, critical thinking, communication, and teamwork. This curriculum helped students do that in high school.

Teaching Takes a VillageBut rather than just have all that fall on a teacher, what would it look like if it fell on the entire community? And so, I was thrust into that. I’m not a teacher or educator, but I’ve been collaborating with teams of teachers to explore how we can work with businesses, industries, and the community to make teaching and learning more relevant.

Since kids struggle with math, as adults, we don’t spend 10 minutes or an hour on math, then switch to science for an hour. It’s all very much connected and integrated. So it was about that connection. I worked with school districts across the country, from New Mexico and California to Philadelphia and New Jersey, as well as throughout the South, focusing on the concept of career academies. So again, this space is where a team of teachers would work together, integrating their curriculum through the lens of business and industry. So that might look like an engineering academy approaching all their math, science, English, and social studies through the lens of engineering, as well as through engineering courses.

Back to DetroitSo that’s where I started. And I was doing this great work all over the country, and then I said I would love to see this work happening in Detroit. Why is it not happening in Detroit? Or how is it happening? How can I be a part of that? I worked at the United Way for Southeastern Michigan for a couple of years, collaborating with Detroit Public Schools to explore what this looks like and how we can help teachers understand it. How can we effectively integrate work-based learning? But then I realized I missed working all over the country, because I was like, “I don’t know what’s happening.” I don’t know what people are doing. Until recently, I never thought of myself as a connector, but I think I am. Because I’ll hear about work that somebody is doing in New York or New Jersey and say, You know what? There’s a great group in Western Washington who’s doing this work. I think you all should talk. I knew I wanted to move to the Boston area, so I began looking for small organizations that were doing mission-based work. And I stumbled upon Vital Village Networks, and that was a game-changer. Wow. And so that’s my trajectory.

Power DynamicsHealth Hats: Fascinating. You were talking earlier about power dynamics. And I just think that’s a key challenge that people have a hard time recognizing and facing and managing it. And it’s inevitable. It’s the human condition, with its inherent power dynamics. And sometimes they work for somebody, and sometimes they don’t, and probably often they don’t. And so how do you keep that lens when you’re facilitating these cross-stakeholder groups? Like, how do you approach that?

Ronda Alexander: Yeah, so the first thing in approaching it is understanding what the goal is that they’re trying to get to? What do you want to do together? What are you uniquely positioned to do as a group in your work? And before I even start facilitating. It’s having conversations, some pre-design conversations, and then collaboratively designing the goals, designing the agenda, checking in, and saying Here is how, based on what you’re saying, based on the work that you wanna do, where you wanna get to, here is how I think we can get there. How does this resonate with you? Also, my particular style of facilitation and holding space is very much participatory. I spend very little time at the front of the room giving information or talking to folks. I set some context, and then it’s off. It’s up to the group. I ask some questions to ensure the conversation is interactive and we hear everyone’s voice.

It’s also recognizing that you have some people who process very quickly. Process out loud. In a room, when it comes to power dynamics, those are typically the folks who are talking a lot. And in those situations, the loudest person is usually heard. And so it doesn’t leave space for folks who are a little quieter, who process a little differently, to have any input. And so making sure that there are small group conversations, extensive group conversations, that there’s time to write and process, and that there’s silence space. So, all of that plays a role, I think, in beginning to manage the power dynamics and also understanding who’s in the room. I recently worked with a team, and yes, the supervisors and leaders were in the room, but they made a point to step back, be more reserved, and genuinely listen to and lean on their team. So, folks felt like their voices were heard. And then, the last thing I’ll say about power dynamics in holding space is that we should develop agreements on how we want to work together and help the group hold each other accountable for those agreements.

Norms: Don’t Be a JerkHealth Hats: One of the things that I like to watch or think about, like this business of norms and so often norms are stated in the negative, there’s some variation of don’t be a jerk, and what’s interesting is when you come across people who are, can lay out those norms in the positive. So, can you think about it? I’m proselytizing a little, but when you consider the norms, do you bring them in? How do you establish norms within any group?

Ronda Alexander: That is a great question. I do both. But I don’t start with mine. For instance, I recently led a group through a conversation about the images or words that come to mind when thinking about a team or group of people functioning well. What does it feel like? Where do you struggle? How do you know when it’s not working? And then what’s the impact that working well together will have on the work that you wanna do? And then based on that conversation, I ask them to then think about what things you, yourself, will commit to coming into this space, and what do you need your peers or your colleagues to commit to coming into this space? And then we read them out. And have a conversation and ask for clarity. And ask folks, are these agreements that you can agree on for how you want to show up in this space together? Typically, folks say yes, and then I ask them to think about one agreement they can focus on for today. Because trying to do ’em all can be overwhelming. Pick one thing you can focus on and hold yourself accountable for today. So, that’s how the group is designing those agreements. Following that, I offer, as a facilitator and holder of space in this room, my support.

Here’s what I need, nine times out of ten. These come up anyway. But I ask people to be as present as possible. Take care of yourself. Folks usually say this next one in one way or another, but it’s watch your airtime. How often are you speaking? How much are you saying? But show up as yourself, like you’re in this room because your gifts, your voice, your perspective are needed. I encourage folks to pay attention to both intent and impact. Often, one of the agreements that comes up is to assume good intent. Yes, we have good intentions, and that can have a different effect than you want. So, you pay attention to that and know that we’re going to hurt each other in one way or another, but let’s hold that and make space for that. Use I statements, tell the truth, but with dignity. You can share your truth without being a jerk. Often ask people to trust the process and then have fun. Having fun is always one of my agreements. I want people to smile, laugh, even if it’s hard work, because that’s what we should be doing. We should bring some joy to it. Yeah, that’s how I reach agreements. And then, often, folks may carry those forward if they don’t have agreements already.

First, Take a Few SecondsHealth Hats: One organization I worked for had people involved in every aspect of their work. They would hardwire space after each speaker, which was a lot. And that was an interesting, yeah. Just. Because I am, my mind just goes, and I’m thinking, what did Ronda say? What do I feel about that? And I’ve got this, like my little voice that gets in the way of listening. And if I can just shut it. It doesn’t matter what I’m thinking while Ronda’s talking.

Ronda Alexander: I just wanna say I absolutely love that. I haven’t done that before. I’m gonna try that, like pause, even if it’s for five seconds. Like pause. Think about it, process it, and then decide if you still have something to say.

GovernanceHealth Hats: What we’re talking about in a way is how all these groups, how these different groups, teams, organizations, govern themselves. And sometimes it’s very formal, sometimes it’s informal. But. When working with different groups, how do you think about the concepts of group, team, organization, and governance? Yeah.

Ronda Alexander: Yeah. I think one key aspect is to consider what decisions need to be made, as I believe much of governance stems from decision-making. What are the decisions that need to be made? Where are we in that process? Understanding the things that are given, right? Like these are things that just are. And so, when I think about governance, those are the things that I think about. And then, how are we going to make decisions? Is it voting, is it consensus? Is it talking it out until we are unanimous on it? Which is different from consensus. Because consensus is, I either like it or can live with it. If I disagree, here’s why. And talking that through. That plays a significant role, but I also think it depends on the ethos of the group. What’s the vibe that you’re going for? Do you want something formal and rigid? Or do you want something a bit more amorphous, and it can flow?

Fast or Sustainable DecisionsBut the other thing is that there has to be time dedicated to deciding, yes, how are we going to do this together? And what’s at stake if we don’t? And recognizing, especially when groups come from different sectors, organizations, or parts of the community, also understanding why we are in the room? What’s our why, and how is it connected to what we’re trying to do collectively? You’ll hear me say collectively, collaboratively, co-design a lot, but really, that’s how we have to do it. Because yes, you can make decisions and things can go fast, but is the idea fast, or is the idea to get to what you want?

Health Hats: Yeah. So fast and sustainable are different. But there are times when. Fast is what’s needed. I know that it’s like now with this chaos. We’re in the middle of yeah. Sometimes, though, the decisions you need to make are really fast. And the more I think that we can think ahead. That this is what we’re gonna do if we get to this or here are our principles that if we’re gonna need to make quick decisions, they’re gonna be based on these principles and then take the time to come up with those principles before you’re faced with that, which is sometimes you can do and sometimes you can’t.

Ronda Alexander: I think you mentioned something key, specifically being proactive. Because when you’re trying to be responsive, you don’t have time to be. You don’t. And so I’m reminded of something this woman used to say to me: “Slow is smooth and smooth is fast.” Sometimes, if you go slow at the beginning, it’s a good idea to take a little bit of time and think strategically.

I was saying this the other day as I was facilitating a strategic planning session, like chess players think. Good chess players think seven to eight moves down the board. So, at the beginning of our work together, how can we be thinking seven to eight moves down the board? Because we know we’re going to disagree, and some stuff is going to come up. So if we can make that decision now, when it comes time to be responsive, we’ve already built that muscle because we’ve been doing it together and doing low-stakes things together early on to make that puzzle too.

Who are the Decision-makers?Health Hats: So, who’s gonna be listening to this? Who listens to me? People who are advocates, activists, movers, shakers, and improving the health of people themselves, their families, and their communities. Yeah. One thing I think that group of people is interested in is the challenge of balance. That. So, these people, who come to a forum that you’re facilitating, are coming from their organization, their team that has its challenges, and the people who come are not always the formal decision makers. Sometimes they’re the informal decision makers. Sometimes, some people care but lack the power to make a difference. How does a representative get a seat?

Ronda Alexander: Yeah. When I think about coalition work in particular, especially if I’m thinking about like the steering committee or the group that’s making decisions for this coalition and it’s representing a variety of organizations, the question is, before you come into the room or send somebody in the room, what authority do they have to make decisions or to speak or represent on behalf of your organization, on behalf of your group? If you’re sending an intern to a coalition without the broader context, they’re not allowed to make decisions. You’ve not only wasted their time, but you’ve essentially done so. They might learn something, but you are wasting the group’s time and slowing things down, especially if you plan to come in later. And so I think one. Understanding why, when folks, when you’re bringing people together to do any sort of work together, what’s the why? Why is it there? And then, why is that important to each person and organization represented, and how will it help them achieve their goals? Even though we are, we want to be a collective and work together. In the back of our mind, we’re thinking of our own goals and what we’re supposed to achieve. How does what we might do together impact and support? My goals, your goals, the goals of the folks to the left and the right of me. And so, really thinking about that, and there’s a shift in mindset too. There’s a shift in mindset in that things can’t all be. If we keep doing things the way we’ve always done them, we’re going to get what we’ve always got, and it was designed in that way. So, if you want a different outcome, we have to change the way we work. This means building in time to connect as humans and stepping into a space together, being clear about why you’re there. What decisions am I allowed to make? What can I contribute, and be ready and willing to do so? I need to be a bit vulnerable, knowing it’s going to be messy, and be willing to work through the mess together.

Coalition BuildingHealth Hats: Yeah, that’s good. As a retired person, I appreciate not being an employee or a boss. And so I have a lot of control. But that’s not the case for most people involved in this work. And the trust factor of being able to say a person can come in and be the uber decision maker, but it’s a whole other thing to go back when you’re with the challenges of everyday dynamics, when you go back. You’re trying to steer the organization and build trust with this coalition group so you can be open about this, which is what I’ll have to deal with when I get home. Having the coalition help you prepare is beneficial. Does that come up sometimes in your groups?

Ronda Alexander: I think it can come up, I think it does some, but most of the time, once I’m working with the coalition, they have decided this is what we’re going to do together. And there’s also thinking about your level of input, right? Or do you want to be a decision maker in all the mess? Do you wish to be informed and tell other people about it? How do you want to contribute and have space when you’re coming together as a coalition again, or any group, to say, “Here are my limitations, or here are my boundaries.” Boundaries is a better word, not limitations. Here are my boundaries. I need to work within these bounds, and I can do so by being upfront about my limitations and asking the group for support. Here are my boundaries. When I leave here and return to my organization and team, I need to be able to say these things. And how do we do that?

Talking PointsOne group I worked with this time was state-level folks working in early childhood, specifically from prenatal to age three. They decided to develop talking points at the end of every meeting.

Health Hats: I like that.

Ronda Alexander: That they would take back to their respective organizations. Here are some talking points, such as decisions made and issues addressed. Here’s what we did in this meeting. Here are the decisions that we made. Here’s what’s coming up next. But they all had the same talking points. So, folks knew they were going to hear essentially the same thing. And I found that I like that. I like that. I found that to be helpful to them.

Health Hats: I think the trust also increases when the numbers are smaller. So, having the breakouts allows us to discuss these issues. It’s just Ronda, me, and someone else. The three of us are a lot different than talking with 20 people around a table.

Ronda Alexander: Absolutely. Anything I facilitate, there’s gonna be some time for you to think to yourself individually, for you to talk it out with a small group, before we come and process it as a big group. Because of that, everybody’s voice gets heard. When it’s just two or three of us in a group, we either have to talk or participate. That becomes a little easier to manage if you get anxiety or if it’s hard for you to speak in a larger group.

First, We ListenHealth Hats: So what haven’t we talked about in this realm that you think we should have?

Ronda Alexander: I don’t know if I would say we haven’t talked about it, but I’ve touched on it. But one thing I’d love to say to anyone working in health with the community in coalitions: listen first, and think about who you’re trying to serve. You want to serve. Who is furthest from the opportunity that? And then listen to them. Listen, not thinking about what you know to be true or what you understand, but start by listening and trusting what folks are saying. And be open, be curious

Health Hats: When you say the farthest from, what does that mean?

Ronda Alexander: So, a lot of times my work is in communities that serve black and brown folks, immigrants, and indigenous folks. I’m thinking about the folks with the least resources. The highest amount of need is also the most difficult for them to access resources. And so, a lot of the time, the work is about shifting outcomes for this marginalized group of people. Great. And here’s what we’re gonna do about it. My first question is, what has that group of people said? What is it that they need? What are they asking for? We can be mindful of what we care about and what’s important to us, but what are the people we are trying to serve asking for? And how do we know? Is it hearsay, or are they in the room? Are they at the table? And make sure there’s space at the table for those folks, not just a token. Okay, we have a community member. No. Have a few and listen to them.

Health Hats: Yeah.

Ronda Alexander: I think that’s the biggest thing I would add.

Health Hats: Wow. Thank you.

Ronda Alexander: It’s been a pleasure. Thank you for having me.

ReflectionWords matter—words in context, cultural, political, social, and personal context. Today, the term “marginalized communities” triggered me. What is the power dynamic of the label? Marginalized is a description of exclusion, being pushed to the edge. Can certain people be marginalized in some contexts and marginalize others in other contexts? Essential for me to know is that marginalized is NOT an identity. Marginalization refers to the inequality certain individuals face in society due to power imbalances built into our systems.

Power imbalances occur between groups and within groups. Awareness of and transparency about power imbalances are key to best health and successful governance. I’m grateful for Ronda Alexander’s stories about herself and her experience with community health groups. I’m a veteran of facilitating collaborative groups. From Ronda, I learned about fast and sustainable decisions, understanding the personal and representative goals of each participant, and transparency about power and decision-making. I love the focus on practicing decision-making in low-stress situations so that ethics can become muscle memory in high-stress moments. Considering the communication styles of participants is helpful. Some individuals are quick-thinking, while others have slow processing. I need sandpaper between my brain and mouth so I take time to process. As Ronda said, be present, take care of yourself, watch your airtime (how much you’re talking versus listening), show up authentically, pay attention to both your intentions and your impact on others, use “I” statements, tell the truth with dignity, trust the process, and have fun. Thanks for joining me in this chapter of Learn with people on the journey toward best health.

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Exploring bird flu prevention with farm owner Shannon Hayes. Discover boot washing, flock protection with coyotes, and best practices in biosecurity.

Summary

The Lede: Bird flu cycles have shortened, forcing farmers like Shannon Hayes to reimagine their biosecurity protocols completely.

Farm owner Shannon Hayes reveals how her family protects their livestock from bird flu at Sap Bush Hollow Farm. Key strategies include washing boots with soap and vinegar solutions, timing poultry purchases for summer months, ending public farm tours, and maintaining coyote populations as natural buffers against wild waterfowl. Hayes emphasizes that bird flu prevention requires continuous practice and adaptation, not perfection. The episode highlights farmers’ critical but often overlooked role in biosecurity and food supply protection during disease outbreaks

Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below.

Contents

Table of Contents

Toggle Episode + Proem + Podcast intro + Introducing Shannon Hayes + Bird Flu: Context and History + An Ecosystem for Biosecurity + Protocols for Biosecurity + Call to action + Changing Protocols – Our Boots + Changing Protocols – Chicks, Eggs, and Chicken + Ducks, Geese, Overflying Birds + Training our Coyotes + More about Shoes and Boots + Gap Found at a Farm Meeting + Practice, Not Perfect + Reflection + Podcast Outro + Related episodes from Health Hats Please comment and ask questions:*

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, TikTok to @healthhats

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk
Leon van Leeuwen: editing and site managementresil
Oscar van Leeuwen: video editing
Julia Higgins: Digit marketing therapy
Steve Heatherington: Help Desk and podcast production counseling
Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection, including Moe’s Blues for Proem and Reflection and Bill Evan’s Time Remembered for on-mic clips.

Podcast episode on YouTube

Inspired by and Grateful to

Sue and Jay Spivack, Jim Donahue, Pat Hultz

Links and references

Sap Bush Hollow Farm

The Hearth of Sap Bush Hollow Podcast & The Radical Homemaker Blog

“Drawing on the Right Side of the Brain” by Betty Edwards,

‘Your Local Epidemiologist’ Substack by Katelyn Jetelina and Edward Nirenberg

New York State Grown and Certified

EpisodeProemThe only time I felt I could draw was when my Oma was dying. I sketched the outside of her. I had recently read “Drawing on the Right Side of the Brain” by Betty Edwards, which revolutionized art instruction by teaching readers to perceive edges, spaces, and relationships—core skills for realistic drawing. It features exercises in contour and blind contour drawing, emphasizing the importance of drawing what you actually see, not what you think you see. Now, when I’m curious, I want to know the backstory to fill out the edges.

My antennae stirred when reading ‘Your Local Epidemiologist’ about Bird Flu. The Paramedic and Emergency Nurse personas in me feel anxious. No reports are coming out of the CDC, the aggregation of State infection data has been discontinued, and the administration is comfortable with days-long reaction times to disasters, having defunded and staffed mitigation work. So, look out farther to the edges of bird flu –the front line of people managing flocks of birds. Bird flu is nothing new, but the usual 10- to 15-year interval between epidemics has changed. Bird flu isn’t dying out or going dormant anymore. The CDC is reporting incidents of infection jumping from birds to people. Our federal government seems unprepared – danger, danger, danger. I know so little, and I’m scared. Not a healthy mix.

Podcast introWelcome to Health Hats, the Podcast. I’m Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all of this.

Introducing Shannon HayesFortunately, I have a dear friend, Shannon Hayes, owner and CEO of Sap Bush Hollow Farm in Upstate

New York – West Fulton. Shannon and I met 25 years ago when my wife and I were buying lamb, chicken, turkey, and eggs from her parents. Shannon podcasts, too. Warm, humorous, informative: The Hearth of Sap Bush Hollow Podcast & The Radical Homemaker Blog. I recommend them.

This conversation with Shannon took place in February of 2025. Shannon is informed, humble, and eager to share. I’ll cut in a couple of times. Not because Shannon’s tale needs a drop of translation or background. But I’ve learned more from these words each time I’ve touched them in production. I needed a second to digest what I just heard. I’ll do that aloud with you. Appropriately, we jumped right in talking about shit, bird shit.

Shannon: Men are allowed to use that term without any problem, but women are looked at as being foul if they use it. However, I’m now 51 years old and I couldn’t give a shit. That’s so funny because that is the language. That we use. You don’t say there’s fecal matter. You don’t leave there’s manure. It’s fast, it’s effective. It’s what it is.

Health Hats: Is a cow shit called something different than chicken shit?

Shannon: No, shit is shit. We identify species, then shit.

Health Hats: Okay. All right. That’s good to know.

Shannon: Hi, Danny. How are you? Good. I’m glad to see your saxophone.

Health Hats: I was thinking about how we met. I met your mom first. Because we were customers, we met you on the farm? Because we did. I thought you were in school or something.

Shannon: I’ve been with Sap Bush Hollow since 1979, when we moved there. But I went away to college. I met you when I was still in grad school. So, I used to help when college was out for the season, then for the summer. And then, when I started grad school at Cornell, my mom was handling all the sales through the farm kitchen. Then I came home every time there was a sale. I also came home every weekend. And, helped on the farm. So yes, it was a big event. She would’ve had to be back there in time to help. Big event with the chicken pickups. Oh yeah. Yeah. And lamb. Yep. A lot of lamb.

Health Hats: A lot of lamb.

Shannon: That’s still the centerpiece at Sap Bush Hollow. We do lamb better than anybody else. Our lamb is the best.

Health Hats: Shannon, please introduce yourself.

Shannon: I’m Shannon Hayes, and I’m now the CEO of SAP Bush Hollow Farm, which my parents founded in 1979.

Health Hats: You’re located in upstate New York.

Shannon: We are located in West Fulton, New York. Anyone from West Fulton is very proud to tag that onto our name because nobody else knows where it is. But it’s in West Fulton, New York, which is in Schoharie County. That’s about 45 minutes west of Albany.

Bird Flu: Context and HistoryHealth Hats: The reason is that you and I have been talking. I was particularly interested in your blog post about bird flu. The reason for my interest was that there’s often a lot of abstract talk about bird flu, and there’s a lack of epidemiological information about it. I appreciated your discussion of the topic on your blog. Oh, and what’s your blog called?

Shannon: It’s https://theradicalhomemaker.net. You can also find it at https://sapbushfarmstore.com.

Health Hats: Okay, thank you. Anyway, I found the concept of having protocols for safety to be intriguing. So, can you explain what that means in terms of establishing protocols for safety against bird flu? Because obviously you have a flock.

Shannon: I’m going to give you a little bit of a historical context first. You came into the circle of Sap Bush Hollow at a time when farmers were really trying to reach out and connect very deeply with the public. And you were one of the leaders in the farm-to-table movement. As far as I can tell, you were one of the original people who decided it was worth connecting directly with farmers. That was a time, and the expectation of small, local sustainable farmers is that our lives, we were all told, had to become an open book.

We needed to be very transparent in what we did and invite the public in to see what. We were all about it, so they could learn to trust us, because everyone thought that if you wanted safe food, you had to go to a grocery store. They had to learn to trust the farmer, as well as trust us as people. And you were one of the leaders in moving forward and saying, ‘Let’s break this barrier.’ Let’s get to know the farmer directly. And that’s how you started stepping foot on SAP Bush Hollow Farm.

Health Hats: I wasn’t a pioneer. I was a back-to-the-land hippie living in rural West Virginia in an intentional community (commune), more rural than West Fulton. We kept chickens, bees, and, for a brief period, goats and a horse. We were used to getting our meat locally. We were excited to discover Sap Bush Hollow in upstate NY.

An Ecosystem for BiosecurityShannon: However, before that time, my dad, who was a professor of agriculture, used to always talk to us about biosecurity and closing the farm loop. We always have to think about biosecurity in terms of if you bring an animal on, you don’t want to bring disease onto your farm.

So, for example, we don’t bring other people’s boars onto the farm. We artificially inseminate the pigs. You try to, we call it keeping the loop closed. You try to keep the farm as an ecosystem. This era in American history, in which small farmers opened up their land and welcomed people onto it, marked a departure from the closed-loop system. But it was great. It was a way to connect with customers and build relationships. But I’m gonna say the dirty word that we’re not supposed to say anymore. Climate change and diseases were real issues. When COVID-19 emerged, biosecurity was ingrained in our nature because we had always had to consider this before many of the COVID-19 protocols for farmers, who had been in farming long before we understood what this meant in terms of maintaining their ecosystem and living within it. And I’ve been noticing, as I’ve been hearing about avian flu in the news. The farmer is conspicuously absent from the conversation, and I think there’s a real danger in that because the farmer is conspicuously absent from the conversation. We, farmers, aren’t talking about how we’re going to protect our flock.

Health Hats: Similar to patients at the table for healthcare decision-making systems.

Shannon: And the fact is, it’s all for one, one for all. If bird flu is found on a nearby farm, we all go into lockdown. Therefore, the only way we farmers can protect our flocks and our livelihoods is by protecting our ecosystems and then protecting one another. I want that conversation to enter the public dialogue. Still, I also believe it’s essential for the public to understand what we’re going through to maintain a resilient and safe food supply.

But also. It’s a little bit insulting when you hear people say, There are no eggs in the grocery store. And I’m sitting on 20 dozen at my little farm store because I have them available. And people seem to think these little farmers are invisible. Still, there are little farmers like me all across the country who are taking measures to keep it safe, engaging in biosecurity protocols, and who would like to sell a dozen eggs to people who can appreciate what we put into this effort.

Protocols for BiosecurityHealth Hats: So, first of all, how did you come up with the protocols? What was your process, either Shannon’s or your team’s, and where did you get your information? How did you develop your safety protocols?

Shannon: Well, an essential tradition on our farm is that we participate in a program called New York State Grown and Certified. New York State Grown and Certified requests that we open our farm to a state veterinarian. And many farmers are afraid that Big Brother may not like the idea of that, but we happen to have. I don’t want to use the term ‘awesome’ freely because I feel it should be reserved for truly exceptional things. And we happen to have an awesome state veterinarian. And he comes onto the farm, and he inspects the pigs. He looks at the sheep. He talks, and we go over all the different things we’re doing. We compile our lists of questions over a year, incorporating observations we’ve made. And he’s on the farm once or twice a year. We make a big pot of coffee, and all of us gather round. He’s coming, let’s sit beside the fire and talk. But my daughters, they’re 18 and 21, they come loaded with questions.

My father comes loaded with questions. My husband and I go. He has built a real relationship of trust with this man. His name is Dr. Robert Scrafford. And we come, we count on him to find out where things are going and what’s happening. And Dr. Scrafford has been working with us for years, largely due to bird flu.

We think it’s hot this year. I’m sorry, but they believe the 1918 flu pandemic was the Spanish flu? I think that might have come from bird flu as well. It’s been around for a long time. This is not new. But as Dr. Scrafford has been educating us over the years, it is cyclical, but the cycles are getting shorter and shorter.

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Changing Protocols – Our BootsThat’s where my information comes from. And what he taught me back in 2022. So, Danny, as my parents aged, we decided not to have on-farm sale days like you used to come to anymore. We opened up a cafe, two and a half miles down the road, to meet people.

And that became particularly important during the pandemic, as it helped keep our social life going. It kept our business going, but it also protected my parents, who were still living on the farm. We would always offer farm tours. And still let people come. However, after talking, what happened was the last big outbreak that I can remember, or the first big outbreak that I recall being active on Sap Bush Hollow, which occurred in 2015.

And at that time, it was, I would say, a 15- to 20-year cycle before avian flu became a problem again. And that’s when my mom would say to me. You don’t leave your shit on anyone else’s farm. And she started changing protocols and teaching us about what we need to do to protect ourselves. And back in those days, it was like you had farm boots. Those are boots that stay on the farm. And that was how Mom thought of it. And you don’t wear farm boots to visit another farm. You don’t wear farm boots to go to town. So you keep those for there. You show up on the farm, you change into those.

And that is where the meaning you don’t leave your shit on anyone else’s farm came from. However, in 2015, we began to learn this. I thought I wouldn’t see avian flu for another 15 to 20 years. That’s not what happened. It reared its head again in 2022. And Dr. Scrafford said to me, ‘You know what’s happening, though?’

He said, it’s not dying out the same way. So it should die down, and it does. People can expect some relief when the weather starts to get hot, but when Dr. Scrafford said, ‘We’re starting to see the cycles get shorter and shorter,’

Changing Protocols – Chicks, Eggs, and ChickenI began to realize that to protect my farm and maintain a stable market supply, I needed to change how I marketed to my customers. I needed to change how. Our policy regarding our level of openness to the public. And so, I started instituting some macro changes back in 2022. The first one is that my customers always expected to be able to order fresh chicken beginning in May. And what I started realizing is that if somebody gets shut down due to bird flu, even if it’s in the middle of the country, they get the first claim on the eggs.

Okay, so we gotta get them back up and running again. The other thing I realized is that if Bird flu hits my supplier for chicks. Then they can’t move either; they’re in lockdown. Even though they have chicks coming, and even though they don’t have bird flu, they’re not allowed to sell me chicks. New York State and many states have different protocols depending on the state you’re in. However, New York State will not let anything cross the line if it thinks another state has bird flu anywhere near. I started changing my marketing strategy, realizing that if I don’t bring live birds onto the farm until summer is really in gear and it’s hot, then I have a better likelihood of keeping my supply chain going.

So I stopped selling fresh chickens in May. I stopped selling fresh chickens in June. I don’t get birds on the farm until starting around Memorial Day weekend. So that was one protocol. The following protocol I started influencing in introducing was shutting down farm tours. Our family still believes that we need to maintain this connection with the public, but to protect us, we must not let the public onto the farm.

Ducks, Geese, Overflying BirdsBecause we used to think it didn’t matter. It was other farmers who presented the risk. It’s not the case. It’s dabbling ducks. It’s wild waterfowl. So, geese and ducks. So, if people like to visit parks, streams, or anywhere else, they could pick it up and bring it back to my farm in 2020.

Health Hats: So, meaning like, when we take a walk along the Mystic River near us. Exactly. There’s bird poop everywhere. Yep. And so that’s what you’re talking about. Yes. Like walking in the park, and there’s Yep. Bird shit. And that’s so I get it on my shoe, and I come to your farm. And I bring it.

Shannon: Precisely, you could bring it. Wow. I had to; I made that choice in 2022 to stop allowing farm tours. However, we still meet people at the cafe and the farm store, which is two and a half miles down the road. We’re not wearing our barn boots there. Okay. And so, we started that protocol. The cycle went from 15 to 20 years, down to about seven years, but now, here we are, in 2025, and it’s rearing its head again. Years. However, what people may have noticed is that we still had outbreaks in 2023 and 2024. Oh, okay. They weren’t as severe as they could have been, but they were still happening.

So, it hasn’t gone away. It dies down and gets better in the summer. However, we’re not experiencing these significant cycles. It is just here now, and we have to understand how to work with it. And before I wrote that piece, we sat down with Dr. Scrafford, and we said, okay, this is what we’re doing at this point. We’re worried still. And he said, yeah, okay. So let’s talk about this. The story you saw on my blog about protecting our farm from Avian flu originated from an hour-long conversation with Dr. Scrafford, during which we began developing some protocols. However, Dr. Scrafford doesn’t have to go through a chore cycle.

So, he started, and then we had to make improvements from there. He said, again, you gotta be careful—Canada geese, beautiful ducks on the streams. If there are beautiful ducks on ponds, you have to be very mindful of that. So when it came down to the shoes I wear for hiking never touched the farm. That’s still true. But then he said,

Health Hats: What about flying over?

Shannon: So that’s the next issue, because you think he says, yeah, he points to the sky, a flock of Canadian geese flies over, and they poop. They shit. And that’s on the driveway in the pasture. One of the things that we try to be is an integrated system.

Training our CoyotesWe don’t shoot coyotes. We try to have good fencing to train coyotes. Coyotes are a real threat to my sheep flock. And boy, do they linger. At night, you hear them singing, Oh my God, please stay on the other side of the fence. What we try to do is maintain a healthy habitat on the farm, and you might think you’d want to eliminate the coyotes.

Interesting fact about coyotes. The more you shoot them, the more they breed. So, you just have to learn to live with them as neighbors. And that neighborly relationship is tied into bird flu for us because we have maintained good hedgerows on the farm that are rich in things that feed coyotes, mice, squirrels, and similar animals.

And then we try to maintain excellent electric fences to teach the coyotes. You can have the mice and the squirrels. You cannot have the sheep. And you cannot have our lambs. So that means we have coyotes surrounding the valley floor of the farm. And what we started to piece together is that we don’t see many wild birds on the farm.

We don’t see ’em on the farm ponds, and we don’t see them in the creeks or anything. The coyotes are buffering us. We ensure they have a suitable habitat. It looks like they’re helping knock on wood. They do seem to be helping to keep those wild fowl on the other side of where we are raising our farm fowl.

And they do seem to be helping us right now. But they can still fly overhead. So yes, there’s still a risk there. What we do is show up on the farm. The good thing about avian flu is that it is easy to kill. Many of the protocols we use for COVID will carry over to Avian Flu.

More about Shoes and BootsWe just have to think about it in terms of what’s on our feet and not what’s on our faces. And because unless you’re eating shit, Danny, then you have to think about that. And if you’re eating shit and kissing chickens, then you gotta think about it. But if you’re not doing that. You really have to think about your shoes first.

Health Hats: Living with Predators: Kill versus Coexist. Similar to biological pest control, it helps avoid the use of pesticides. Encourage natural predators, such as ladybugs, lacewings, birds, or bats, in your garden to help keep insect populations in check.

Shannon: And what we do is with Dr. Scrafford, we discussed the power of soap and water, but. What he taught has taught us many times over the years. He doesn’t show up on the farm without giving us a lecture about how to properly wash boots, because a veterinarian should not show up on your farm without doing a boot wash either, as farm vets often visit multiple farms.

So a proper boot wash needs to happen every time chores start. And a proper boot wash means soap and water in the bucket. However, you need a scrub brush, but it can never touch your clean soap and water. If you’re in healthcare, you’re probably more familiar with this than even I am. But we’ve always thought about farmers, we wear our shit military stripes and medals, right?

We’re used to working with the salt of the earth here, but no, we have to be pretty clean about this. We have the scrub brush, soapy water, and a scoop. And the scoop lifts the soapy water. It goes onto the boot and the scrub brush. And the scrub brush never touches the clean, soapy water.

So we’re constantly approaching the boots with clean, soapy water, you can’t contaminate that soapy water. That’s how you properly scrub a boot. Then we walk out from the farmhouse. The first thing we do is go to the chickens. While we strive to be as clean as possible. These are the laying hens. Currently, I don’t have meat birds on the farm.

Again, they won’t come until after May 31st. I have layers, though. Currently, I have approximately 150 layers on the farm, and during the winter, we need to keep them indoors. They dislike being outdoors in the winter. And then we are at the threshold of the chicken pen, the chicken coop. At that point, we washed again because maybe a bird shit in the driveway as we were walking out. And perhaps we stepped in it. So, we stop there, and at that point, we have a crop like an orchard sprayer that you might use for applying insecticides or similar products. We have it loaded with a vinegar sanitizing solution, consisting of just vinegar and water. At that point, we take the sprayer and spray down again with the vinegar solution.

Gap Found at a Farm MeetingAnd that was Dr. Stratford’s protocol. I brought this protocol to a farm meeting, and we have one farm worker. And then it’s the rest of us as family. And we all sat around one morning, and we discussed this, and they’re looking at me, and I’m feeling like, oh, I know what I’m about. Listen to me. I’m an authority. And I’m the boss now. And they’re hearing me and they’re looking at me and they’re going, yeah, buckets. What do you mean by ‘buckets’? Mom? Buckets.

We set the buckets down in the driveway and carry them out to the pigs. Then we come back and we fill the buckets for the chickens. And like buckets are going everywhere. Oh my God, we can’t; we’ve got to watch the buckets. So they figured out we have to label specific buckets. Therefore, the buckets must be placed with the chicken feed so that they don’t come into contact with the ground.

And then they figured out we have to keep a pallet outside where the chickens are. The pallet lies down on the ground, goes up so no one can touch it, and so nobody can poop on it. And then we lay the pallet down outside the threshold. All buckets are then hung on the pump to get filled with water, and they’re walked to the pallet, filled with feed, and then walked back to the pallet.

They cannot be set down. They must go straight to the pallet. Then the crop sprayer sits on the pallet, and then we spray down the boots. Wow. But there’s another problem, Danny. Oh, bird flu is at its worst in the winter. I didn’t realize how badly these little sprayers freeze up in the wintertime. Oh. We’ve had to deal with numerous problems. We’re working with spray bottles, we’re changing the solutions.

Practice, Not PerfectWe’re always dealing with what I’ve had to say to the whole crew, in medicine, we call it a medical practice. In veterinary science, if you’re a vet, it’s a veterinary practice, and you have to use its, a practice. It’s not perfect; you have to dedicate yourself to a practice because it’s so easy to become frightened and paralyzed.

And I think a lot of us experience this during COVID. I’m wearing my mask, but then I wash my hands, and I can talk, but I can’t talk. It is all that all over again. And what COVID taught me is that it’s the practice that matters more. It’s not perfect. So, we are always trying to work on the protocol, improve it, and discuss our thoughts with each other. Then, you must approach it with forgiveness.

It’s crucial because the fact is, it can still happen. We can still have an outbreak, and it’s gonna really hurt us. This. There was, I’m not sure if it will continue, indemnity available for farmers who are affected by this, but it will not compensate for the lost sales. It will not add to the heartache. My daughters have chickens that are their pets, and sometimes, when people stop keeping chickens, they give us their pets to adopt. We love our chickens and the farmer’s farm because they love animals, not because they like to kill them. If it hits our flock, it doesn’t matter.

Health Hats: Another insight. It’s the practice that’s important, not the perfection. We still might get infected. No guarantees, but less likely. As a person with chronic conditions, it’s essential to incorporate exercises for the eyes and balance, stretching, squats, upper body strengthening, and a balanced diet. I embrace practice over perfection. I may still experience exacerbations—the same with podcasting—practice, not perfection.

Shannon: If we call the state vets to come dispatch, they’ll be dead within 48 hours. Everybody will be dead. We have geese on the farm that are just there because we love them. There’s so much there. That’s about love, wanting to protect them like they’re your family members. The reality is that it can happen.

The reality is that if it does happen, I’ll be heartbroken, as will the rest of us. But you can’t stop living. You can’t stop trying. And you can’t become paralyzed by that. So it’s a practice. You do your best, you exercise the best judgment that you can. You take the best steps. You acknowledge that there is still a risk, and it could still occur.

Thank you. This is great. I appreciate it. Thank you.

Health Hats: This is really helpful. I truly appreciate your time and your excellent work, and I enjoy seeing you.

Yeah. All right. Take care.

ReflectionIn June, we spent two nights in Schoharie County and had breakfast at the Sap Bush Hollow Café. Later, Shannon, Tom, and Jim Hayes also joined us to celebrate our 50th anniversary. My favorite part of this story is when Shannon, full of herself, hears her daughters says, ‘What about the buckets?’ After listening to Shannon, I will learn about bird flu in a different way than before. I’ll also have a different perspective on other potential pandemics, such as COVID-19 and measles. Stories like these inform good policy, practice, and products. Hopefully, they’re contagious—the stories, not the flu. Prevention requires granular work. It’s a continuous experiment filled with humility. I’m grateful for kids and grandkids who give me opportunities to practice humility.

Podcast OutroI host, write, and produce Health Hats the Podcast with assistance from Kayla Nelson and Leon and Oscar van Leeuwen. Music from Joey van Leeuwen. I play baritone sax on some episodes alone or with the Lechuga Fresca Latin Band.

I’m grateful to you who have the critical roles as listeners, readers, and watchers. Subscribe and contribute. If you like it, share it. See you around the block.

Related episodes from Health HatsArtificial Intelligence in Podcast Production

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MS patient turned healthcare disruptor shares why your biggest “problem users” are actually your most valuable system improvers.

Summary

The Lede: Collaborate with patients, caregivers, and clinician partners to develop tools that truly inform health decisions.

From a reluctant keynote speaker who prefers hallway conversations comes wisdom about transforming healthcare through authentic partnership. At the American Nursing Informatics Association conference, Danny van Leeuwen shared how his MS diagnosis led to a revolutionary approach with his neurologist: “You don’t know anything about multiple sclerosis, but I don’t know anything about you.”

Key Insights:

Healthcare hackers aren’t criminals—they’re your most dedicated users finding creative workarounds
Collaboration is about power dynamics; the more you hoard power, the less you can truly partner
Everyone needs to be at the table: patients, caregivers, AND clinicians
Aim for a .300 batting average—failing more than succeeding, but keep swinging

The secret sauce? Bobbleheads on his desk representing different audience personas, grandsons who told him to stop burying the lede, and the understanding that making healthcare decisions is like renovating a kitchen—endless choices requiring trusted partners.

Ready to take one more step in collaboration?

Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below.

Contents

Table of Contents

Toggle Episode + Proem: A Reluctant Keynote Speaker’s Confession + Grandkid Wisdom + Lead with the Lede + Podcast intro + Prepare for Action + Start with Self-Knowledge + MS Detective: Dr. Sherlock + Activists, Disruptors + The Bottom Line + Health and Care Decisions, Like Kitchen Renovation + Bobbleheads of Informaticists + In Defense of Healthcare Hackers, the Good Kind + My Hacks + Call to action + Inevitable Disruption, Pearls + Cat Herding 101: Without Losing Your Mind + Collaboration: Sharing Your Toys + House Cleaning before Reorganizing + Partnership from the Ground Up + The Power Dynamics Tango: Who’s Leading This Dance? + Foundational Expectations + Capacity + The .300 Batting Average Philosophy + Culture, Listening, Sharing Power + Next Steps + Reflection + Podcast Outro + Related episodes from Health Hats Please comment and ask questions:*

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, TikTok to @healthhats

Production Team

You know who you are. I’m grateful.

Podcast episode on YouTube

Inspired by and Grateful to

Mark Heyward Johnson, Kristina Moran, Leon and Oscar van Leeuwen, Michael Chaffin, Josef Chlachula, Tom Trainer, Pegret Harrison, Fred Gutierrez, Jeff Horner, CA Stockwell, Wendy Coad, Bob Lecher

Links and references

American Nursing Informatics Association

Susannah Fox

EpisodeProem: A Reluctant Keynote Speaker’s ConfessionA confession: I’m a keynote speaker who’s ambivalent about keynote speeches. Give me the hallway conversations, the poster sessions, and the coffee-break connections—that’s where my unexpected learning happens. But when my friend and podcast guest, Mark Heyward Johnson, invited me to speak at the American Nursing Informatics Association conference in New Orleans, I faced a delicious challenge: how do you transform a formal presentation into the kind of authentic exchange that changes how people approach their work?

Grandkid WisdomThe answer, it turns out, lies in the space between listening and action—and in the wisdom of my two teenage grandsons, who advised me to stop burying the lede and use fewer words on my slides, along with my international colleagues who offered expertise in honing audience engagement through storytelling and keeping the focus on the ask.

Lead with the LedeThe conference took place at the end of March. I received the full professional multimedia recording of the presentation in mid-May, and I’m starting the episode production in early June. Before I can create a lede introducing the episode, I need to clarify its purpose. What action do I hope readers, listeners, and viewers will take after consuming this content?

The lede for the presentation is:

Collaborate with patients, caregivers, and their clinician partners to develop and evaluate tools that inform health and care decision-making.

So, is my purpose to share the recording of the presentation and hope podcast consumers take one more step in partnerships? Or is the process of creating a presentation more valuable to my followers? Can I do both?

Prepare for ActionWhat is my ambivalence about attending and speaking at conferences? As an attendee, I want to learn a nugget and leave inspired to take a specific action that could alter my path. When I listen, I silence my inner voice that asks, ‘How does this affect me?’ What do I want to say? So what? However, as a patient/caregiver partner and advocate, listening is the beginning. What did I hear and learn? How does that connect to other ideas and people? How can I adjust? Real change happens when I shift my habits one step at a time.

I had six months to prepare. As a world-class networker, I engaged others in the development of my presentation. My grandsons and international colleagues, who weren’t experts in my topic but were knowledgeable about communicating with diverse audiences, leading to action. They asked me what I wanted attendees to leave with: curiosity, connection, energy, and perhaps, take one more step in collaboration. We discussed using a multimedia approach, keeping the audience engaged, and managing a hybrid conference (in-person and virtual).

This episode focuses on collaborating with patients, caregivers, and their clinician partners to develop and evaluate tools that inform health and care decision-making.

Start with Self-KnowledgeI’m a two-legged, cisgender, old white man of privilege who has MS. I’ve been a care partner to my grandmother, my mother, and a son’s end-of-life journey. I’m a nurse. I have led several EHR implementations. I’ve held the C-suite position of VP of Quality Management in healthcare and have also consulted. I wear a lot of hats, hence. Health Hats.

MS Detective: Dr. SherlockSo, when I was diagnosed with secondary progressive MS, my neurologist said, “you don’t know anything about multiple sclerosis.” I know a lot about multiple sclerosis, but I don’t know anything about you. Your job is to learn about multiple sclerosis, and my job is to learn about you. I thought I had died and gone to heaven. Then he said, “okay, so when you come back, I want you to tell me what’s important to you.” I talked to my wife and kids, and I returned with the idea that I want to progress as slowly as possible. I want to stay safe. I want to keep playing my saxophone, and I don’t want to interfere with my pathological optimism. He said, “we can work with that.”

Activists, DisruptorsAs you can probably tell, I’m an activated patient, and you may be one too. You’re certainly an activated informaticist, or you wouldn’t be here. Activated people are disruptors. And they are most likely to use the products that you work on, and they’re going to make ’em better. The rest of this presentation will help you understand what it is, assess the current situation in your shop, and then you can decide what to do next and how to adapt.

The Bottom LineThe bottom line here is that we’re beginning right now with self-knowledge. You learned a little bit about me. You’ve just learned a little bit about each other. We’re going to focus on the triads of deciders patients, caregivers, and their clinician partners. We’re going to appreciate people who hack healthcare; we’re going to talk about engagement as a dynamic of power. We’re going to think about the infrastructure that collaboration operates within. And I’m going to encourage you to take one more step in your collaborations.

Health and Care Decisions, Like Kitchen RenovationMaking decisions in healthcare is a lot like putting in a kitchen. There are endless decisions to make: the cabinets, the workflow, the appliances, and the hardware. Are you going to use gas or electricity? Your budget versus what you want. In healthcare, making informed decisions about health and care is a similar process. My wife and I made decisions about our kitchen together, which really meant she made the decisions, and I cared about a few things. I cared that the heavy things were low. I cared about the lighting, and I wanted to ensure we had the best hardware possible, as well as plenty of room to move around. But otherwise, she made all the decisions. And it’s like making healthcare decisions. I vetted, and I trust my wife and my partner clinicians. Except for a few things that are important to me, I’m happy for them to make the decisions. There are just too many, and it’s based on the things I said before. I want to keep playing my saxophone. I want to stay safe; I don’t want to mess with my pathological optimism.

However, as informaticists, we don’t know who is making the decisions. The work we do needs to benefit all those people, for that whole triad.

Bobbleheads of InformaticistsWe’re all informaticists. I believe in bobbleheads. These bobbleheads you see here are visible from my desk. Bobbleheads are essential because they give me an idea of who my audience is when I’m doing my work. It’s like, who’s my audience? You might think of them as personas or use cases.

The diversity of people is just incredible. I find it helps me to think about Bobbleheads, and so there’s Scarecrow: if I only had a brain. Informaticists develop clinical decision support systems. Some of you know Rosie the Riveter. My mother-in-law was a Rosie the Riveter. She worked in an automobile plant in Buffalo. Rosie the Riveter is about worker empowerment. And they train healthcare staff on new technologies. Then you have Sheri, the Avenger. My grandkids introduced me to Sheri the Avenger, based on a Marvel comic, and James Bond character Q as a tech-savvy princess. Sheri implements and optimizes electronic health records. Finally, there’s Dana Scully, an FBI agent in the X-Files, and she’s about hard science. She’s a skeptic, and then when she agrees, she’s all in. Now we have a sense of who we are.

In Defense of Healthcare Hackers, the Good KindUsually, we think of hacking as a crime involving someone intruding into our system and demanding ransom. Hackers are the most dedicated users of systems, adapting them to fit their workflow. They develop workarounds and have innovative uses for the systems. They seek more functionality and spot cracks and flaws in the systems they utilize. Everyone hacks. The EHR was designed primarily as a billing system and excels at that. Regulatory features were added out of necessity, and clinical aspects were subsequently shoehorned in. Patients and caregivers are placed far down the priority list. Therefore, it’s no surprise that hacking the EHR is needed; it’s structured in a way that invites hacking.

My HacksI’ve done all sorts of different hacking. The simplest one was with my son. There was no proxy log-on. I used his login and password. With my mother, there was a proxy, but it was a pain, and we ignored that and did it that way as well.

I’m not sure about you, but I don’t recall a doctor’s visit. I work here as a nurse, and I’ve been in healthcare for 50 years. When I go home, I remember, at best, 25% of what happened. So, I record to share with my wife.

The hack I’m currently experimenting with is the shiny object: AI. I keep a spreadsheet to track what’s important to me. It includes the time I play music. It consists of the steps I take every day (I aim for 3,500 steps a day), falls, and my weight. I want to use Claude to create a graphic that I can take to the doctor or any other clinician I’m visiting. And I want it to help me with doctor speak. So far, I’ve failed. I’m still learning prompting. Perhaps I need a solver.

Call to actionI now have one URL for all things Health Hats. https://linktr.ee/healthhats. You can subscribe for free or with a contribution through Patreon. You can access show notes, search the 600-plus episode archive, and link to my social media channels. Your engagement by listening, sharing, liking, and commenting makes quite an impact. Thank you.

Inevitable Disruption, PearlsWe’re here because we’re all informaticists, and as an informaticist, I am intrigued by hacks and workarounds. I must confess that my staff, not so much. They think workarounds are a pain, and they often saw hackers as the enemy. How do hackers affect you, and how do workarounds impact you? I’m sure they do. I’m sure that people complain about hackers and workarounds. They’re not wrong to be annoyed by it. It’s disrupting. It’s a problem because healthcare is often viewed as a factory, right? It’s a factory line, and its smooth operation is crucial. When implementing something new, the degree of disruption it causes for everyone is crucial.

But once you start to appreciate the value of hacking and start working with people who are doing the hacking, and so patients, caregivers, and their partner, clinicians, and probably you once you start seeing how people are hacking well, that helps you then to anticipate the disruptions that might be happening. What if you had involved them earlier? What if you had involved them from the beginning? So anyway, I’ve always found workarounds and hacking to be diamonds. They point us to what we don’t know. The more I learn, the more I realize I don’t know.

Cat Herding 101: Without Losing Your MindLet’s consider collaboration. I’ve led two EMR implementations. I had no training in information technology. I still have no formal training in information technology. It was 2008, and I worked for an agency that provided integrated substance abuse services. And we also had a contract to manage the behavioral health benefits for a local insurance company. We had two legacy claim systems, which were, of course, different, with the clinical system being entirely paper-based.

Collaboration: Sharing Your ToysMy boss, in his wisdom, chose me to lead this implementation. As the ignorant person that I was, the first thing I did was invite everybody who was going to touch this system to a seat around the table. This includes patients, caregivers, clinicians, community partners, as well as the usual suspects of nursing, laboratory, radiology, and registration staff. We began before selecting a vendor, and we met weekly for years. People showed up and participated. I learned how to herd cats.

House Cleaning before ReorganizingI made one huge mistake, being the ignorant person that I was, in not cleaning up the core data sets from these legacy systems. As you can imagine, having two legacy systems and then trying to go live with a new single system was a mess. But I was considered a success. Who knew? The parent health system invited me to lead their transition to a new electronic health system. I insisted that we clean up the core data sets before we started. That was a fight. Then, I wanted to invite everybody who would interact with it to a seat around the table. I was not successful. It’s too hard to do. I’d used up all my political capital on the data sets, so we didn’t do that.

Partnership from the Ground UpI served as Vice President for Quality Management at Advocates Inc., supporting about 40,000 people with disabilities in central Massachusetts. This was an exciting organization. They had patients, clients, residents —whatever you want to call the people they served —participating in every decision-making body they had, from the board, if they lived in a residence, to the residents’ decision-making group. The people who served in governance had paranoid schizophrenia, brain injuries, or were deaf, blind, or nonverbal. They added a lot—one of the things that I found being in the C-suite is you hang out with this small group of people, and you know what they think and the power dynamics, and it, there’s it’s tough to get a new idea in a C-suite. One of my jobs at Advocates Inc. was to prepare patients, residents, and consumers for the board meetings.

I also work with the community-based University of Maryland School of Pharmacy in West Baltimore, which has a steering committee that is more than 50% comprised of consumers. They do not begin a service or start any research if the advisory board or the steering committee nixes it.

The Power Dynamics Tango: Who’s Leading This Dance?Collaboration is about power. It’s about ego and power, and the more people hoard power, the less they’re able to collaborate. Starting to think about collaboration as a power dynamic, you can see that there is a continuum of power, and relinquishing power is challenging for people, including you and me. If you’re going to collaborate, that means you’re going to listen, and sometimes, people have a better idea than you do. This means you’re doing something different.

As you can see, I’m genuinely passionate about collaboration. I’ve done it my whole career. I’ve experimented with it. But I am not proselytizing to you where you should be in collaborating with patients, caregivers, and partner clinicians. Every place is different, and you have to be comfortable with what you’re doing. As a change agent, one of the things I’ve learned is that you can’t be more than 15 minutes ahead of your constituency. If you are, you have to go back and get them. That’s hard to do.

Foundational ExpectationsCollaboration occurs in a context. It occurs in a context of values, foundational expectations, and infrastructure. Let’s consider the PCORI, or the Patient-Centered Outcomes Research Institute, and its Foundational Expectations. I want to highlight three of them for you. The first one is diversity and representation. The universe of people is massive. I know it’s not PC to talk about diversity anymore but just think about the languages people speak. People may prefer to read, listen to, or watch. People are older, people are younger, some are introverts, and some are extroverts.

CapacityHow did I get started in this kind of work? I’m Health Hats, and I’m disabled. People can check off many boxes. I’m a low-risk participant, and so my job has been to create new seats for people, for more people, and invite them in.

Then there’s capacity. At PCORI, people have drunk the Kool-Aid—everybody from the board to leadership to staff believes in collaboration. And we have money. Now what? The capacity of ourselves and our partners varies. There is a lot of work involved in developing the capacity to collaborate effectively.

The .300 Batting Average PhilosophyFinally, there is the ongoing review and assessment, as there is no one way to do this. Failure lurks everywhere. I have failed many times. Frankly, if you really want to know, I’ve been fired twice and laid off twice. It’s not easy. My goal is to bat .300. If you don’t know baseball, that means you fail more than you succeed, but you keep going, you swing again.

Culture, Listening, Sharing PowerNow, let’s think about infrastructure. I am blessed to wear many hats. I’ve had a 50-year career in nursing, quality management, and consulting. I’m committed to collaboration. I’ve done it. It is just what I do. I’ve always been this way, and I’m always gonna be this way. I often got in my way. I frequently didn’t have anything that I needed. My best boss told me I was an acquired taste. My wife says that I need a boss with a lot of self-confidence. My favorite position was being at the right hand of the boss because that’s where you set the culture of listening, the culture of sharing power, mutual support, and curiosity. It takes money, staff, and time. It’s not easy, nor is it for the faint of heart, but it’s worth it. I’m going to assume that most of you would like to increase the amount of collaboration and partnership you do with the triad of decision-makers. And if you’re not, congratulations. You should become a mentor.

Next StepsThere are some steps you can take. This is lonely work, and the first step is to find a team who will do this with you. I don’t necessarily mean your informatics team; I just mean some other people in your organization who believe in collaboration with patients, caregivers, and their clinician partners. A step is to analyze readiness. So that’s first yourself. How ready am I for this? How ready is my team? How ready is my hierarchy? And then to analyze that and think about it in terms of the foundations and the infrastructure. And then you just gotta start somewhere. And if you don’t know, phone a friend and experiment. And when I say ‘experiment,’ batting .300 is fabulous.

ReflectionI thoroughly enjoyed presenting to the Nurse Informaticists and collaborating with my virtual Monday Morning Coffee group and my grandsons. I learned a great deal while embodying collaboration. I received both kind and critical feedback during three sessions from trusted colleagues who had never heard of nurse informaticists. Introducing them to my audience helped me refine the content and flow, especially with the inclusion of bobbleheads. My collaborators encouraged me to add two interactive sessions and a short video, in addition to the Q&As, to directly engage the audience and keep blood flowing to their brains. This was crucial since the presentation began at 8 am, after attendees had a lively late night in New Orleans’ French Quarter.

I began preparing four months in advance of the gig, with several opportunities to rehearse. Despite the considerable lead time, I made significant revisions to the presentation in the last week, when my grandson pointed out that I was still burying the lede, and again the night before, during a final dry run with my cousins, who had hosted me. Since my collaborations took place virtually, I was prepared for a hybrid audience.

When I looked out at the audience, I noticed people dragging in and peering down at their phones. Nevertheless, I could sense their laughter and sighs in response to my stories and wry comments. The interactive sessions had attendees share, When did you first realize health was fragile? What next step will you take when you return to work? I appreciated the dull roar in the Ballroom and heavy activity in the chat. My worry about the virtual audience’s inclusion and attention proved unfounded as the 120 virtual attendees asked twenty questions compared to the four from the 320 live attendees. Almost 80% of the evaluations were completed, with more than 95% rating the event positively.

Finally, my takeaways from the experience are to walk the talk of collaboration; bounce ideas, structure, and content off trusted people who know how to provide warm, actionable criticism. Connect with the audience through stories, use multimedia, allow space for them to interact with each other, and remove content as needed. Allow plenty of time for the form to iterate without letting it paralyze you. Be ready to rewrite when the advice calls for it. Take opportunities to rehearse, and by all means, don’t bury the lede.

I’m grateful to you who have the critical roles as listeners, readers, and watchers. Subscribe and contribute. If you like it, share it. See you around the block.

Related episodes from Health Hats

Rebels in Health – the Enemy is Disease

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CDS. Listen, Learn, Informed Choice.

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Creative Commons Licensing

CC BY-NC-SA

BY: credit must be given to the creator. NC: Only noncommercial uses of the work are permitted.

SA: Adaptations must be shared under the same terms.

Please let me know. danny@health-hats.com. Material on this site created by others is theirs, and use follows their guidelines.

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The post First We Listen, Then We Act. Informatics in Decision-Making first appeared on Danny van Leeuwen Health Hats.

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These families created a pandemic pod with clear rules & shared childcare. While adults navigated anxiety, their kids called it “the best time of their lives.”

Summary

Bevin Croft and David Weintraub talk about their experience forming a “pod” during the COVID-19 pandemic.

Health Hats introduces participatory governance – a concept I’ve studied throughout my life in various contexts, including families, communities, organizations, and healthcare. My history with governance spans from 1968, through college activism, homeschooling my children, living in an intentional community, and working in corporate settings.

The main segment features a conversation with Bevin and David, who formed a COVID-19 support group, or pod, with other families to help one another during the pandemic. They discuss:

They spontaneously decided to form the pod in May 2020
Creating formal rules and a written agreement to manage risks and expectations
The challenges of prioritizing the pod over extended family relationships
The practical arrangements include shared meals, childcare, and rotating responsibilities
Their collective approach to virtual schooling for their children
The difficulties David experienced as a teacher during hybrid learning
How their children viewed the pod experience as “the best time of their lives” despite adults’ pandemic anxiety
The lasting bonds their “family of friends” developed and maintained

The pod used tools from Bevin’s work in person-centered practices to create its governance structure. They made decisions based on consensus, with particular attention to accommodate the most cautious member’s concerns. Their experience strengthened existing friendships and created lasting bonds between the families.

Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below.

Contents

Table of Contents

Toggle Episode + Proem + Podcast intro + My Life with Participatory Governance + Forming a Pod + Rules + Not easy + Priorities + Rules, Contract, Risks + Tools for Agreement + Accountability + How are You Different? + Meals + Childcare + Traveling Together + School and Working + Tough Times as a Teacher + Kids Loved It + Belated Introductions + Call to action + Reflection + Podcast Outro + Related episodes from Health Hats Please comment and ask questions:*

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, TikTok to @healthhats

Production Team

You know who you are. I’m grateful.

Podcast episode on YouTube

Inspired by and Grateful to

Jan Oldenburg, Nakela Cook, Russ Howerton

Links and references

World Health Network

National Center on Advancing Person-Centered Practices and Systems

EpisodeProemMy advocacy revolves around participatory governance in everything that contributes to a decent quality of life. Participatory governance entails broad involvement, accessible information, transparency, and accountability, leading to trust in decision-making. I’m a lifelong student of governance, having studied it in families, communities, teams, organizations, healthcare, research, and various other settings.

My Life with Participatory GovernanceI’ve watched and participated in governance since 1968, when I was 16, dealing with the Vietnam War draft. I learned that the plumbing of the draft contained laws, written regulations, and unwritten rules, with people making decisions, people moving paper, and massive numbers of kids like me processing through. I wanted to prepare myself, so I went to a church for draft counseling. My counselor invited me to become a counselor, helping men learn the process, make life decisions, and execute those decisions.

I went to college and lived in several group settings. We had to decide how the chores would get done, meals made, bills paid, and transportation arranged. While protesting the Vietnam War, I learned how activists organized rallies, and how the University was run. I gained insights from my professor friends about how change happens. While raising kids and homeschooling, my wife and I experimented with participatory democracy. The same issues arose: chores, money, and who sits where. After that, we lived in an intentional community with four other families on 160 acres. We needed an infrastructure for effective decision-making. We formed a corporation to own the land, created bylaws and a Board of Directors, and established rules for joining and leaving, paying taxes and bills, and behavior guidelines. As a corporate change agent, I was fascinated by governance, managing clinical and IT teams, and participating in mergers. Since then, I have served on several Boards and chaired one. The most impressive governance I’ve seen in sixty years is the World Health Network, PCORI, and the COVID pod created by several family friends.

Forming a PodI spoke with Bevin Croft and David Weintraub, who represent four couples with pre-and primary school children, forming a pod to manage their children’s education and lives together while remaining safe. I’ve known Bevin since 2007. We became fast friends; I officiated at her wedding.

Health Hats: When did you give what you were doing a name?

Bevin: We used the name ‘pod’ because that was already like in the consciousness, like on the internet, as people were doing. They were creating pods.

Health Hats: When was the first time you did that? About yourselves?

Bevin: Yeah, we broke the seal. We had been discussing it, and we were all hanging out outside with the kids, which we had been doing regularly. And it was in May, although I don’t remember the exact day. And we were just like. Fuck it.

David: Yeah. We’re like, ‘ This is stupid. ‘ We’re gonna do it. This is dumb. Like, why don’t we just hang out?

Bevin: We just started hanging out, and we never stopped,

David: But there were some slight complications because the Owens moved to Hawaii. I think they moved in mid-April. I think they moved on April 15th or something. And they went for six months, from April 15th to October 15th.

Bevin: It was our very close, tight-knit group of 19 people, five families. Four of the five families decided to do this.

David: Three. No, the Chulas were not part of it.

Bevin: The Owens were before they moved to, that’s right. Yeah. So, when we were like, screw it, we wanna hang out. It was these four families. The fifth family had another family with whom they had already podded; they also podded with another family with whom they shared some childcare arrangements. Yeah. Bennie and Allie. So they didn’t pod with us. So, it was the four. Anyway. Yeah. It was at least these three families. And then a couple of other close families came and went.

RulesWe just started hanging out together. And it became evident very quickly that we also had to establish some rules because, back then, it was as if you were hanging out with us and your parents. Then what if we get each other sick, and then we bring it to, yeah, a parent, and then that parent gets sick and dies, and then we live with the guilt that we were messy? Those were the kinds of stakes and conversations we had to have. So, effectively, we didn’t spend time with our parents.

David: Correct.

Bevin: And hung out with each other. One of the calculations was that for day-to-day sanity and closeness, and this is true. In general, I think your friends are the most important for people. Not for everybody, but for us. And for a lot of people in our stage of life. Yeah. Having close friends who, with other kids the same age as your kids, was more essential. Yeah. To us socially.

Not easyDavid: It was also hard. It was hard for me because my sister lives in Arlington and has two boys. She was upset that we couldn’t see them outside very often. We would go bike riding in a parking lot just to see each other. But we couldn’t hug or be in close contact, we couldn’t be indoors, and that wore on them, and it wore on us a lot. But Bevin is right. We chose that because Jasper and Ivy live five doors down, right? And it just made more sense to have a close, literal, and emotional connection as the main connection at that point. However, it was challenging, as I had numerous tense conversations and non-conversations with my family members about that. Nothing was ever said that was mean or vindictive, but I think everybody felt the tension. Like I felt it, Jessie felt it, my sister felt it, her kids felt it, our kids felt it. So that was really hard. But at the same time, I think that having that pod was really necessary at that point.

PrioritiesHealth Hats: You just mentioned a specific challenge with it. What was challenging for you?

Bevin: About our arrangements? I loved it. I didn’t have anything. It was clear to us that we wanted to spend time with these people, which was our priority. Everything else about the pandemic was challenging, but the actual pod arrangements themselves were the greatest challenge, as they involved negotiating everyone’s needs.

Health Hats: Needs meaning alone time? Quibbles?

Rules, Contract, RisksBevin: No. It was the rules. It was knowing the rules.

David: You should tell about the contract.

Bevin: Yeah. So, it became clear quickly that there was no way we could. You know that. I don’t know the details, but I’m sure it was for families now.

Health Hats: And you couldn’t wing it.

Bevin: We couldn’t wing it. Yeah. We couldn’t just say, ‘ Oh, we’ll find out.‘ It was like, no, it felt like life or death, right? No. We cannot infect the grandparents. No, you can’t just hang out with this other family on the weekend. The stakes back then, before vaccines, when we didn’t know the extent, were that somebody could get sick and die. So, the stakes were very high. We all had to be on the same page about our commitment to this like-pod arrangement.

Tools for AgreementSo, I brought out some tools from work. I still run a national technical assistance center for state governments that supports people with disabilities, called the National Center on Advancing Person-Centered Practices and Systems. It’s essentially a technical Assistance Center funded by the Centers for Medicare and Medicaid Services in the Administration for Community Living, which supports states in complying with requirements for making strengths-based, life-affirming, inclusive service plans for people with disabilities. And all kinds of tools have come out of that movement. It started as a disability movement and was adopted by the federal government. But there are all these tools for like families, chosen families, and circles of support to negotiate what a good life is like for a family member with a disability. So, we essentially took some of those tools and modified them to create what our life as a pod needed to be like. And there were all kinds of tools that came in handy. How do we balance quality of life with health and safety and balance multiple people’s priorities and needs? We went through this, spending a couple of hours one day together, all eight adults, while the kids played and mapped out on a big sheet of paper. What are we, and how do we hope to be together? What is the ideal way for us to spend the next ride out, considering COVID-19, together as a community? What are the ways that this could go wrong? What are the ways that this could go wrong? What do we need to do and agree to that will lead to the ideal state? And what do we need not to do that will result in the undesired state? And we matched it all out. And we came up with an agreement together. And we wrote it down and adhered to it. And it really, truly worked beautifully. Yeah.

Health Hats: And how many items are on it?

David: I don’t remember. There were like 20.

Bevin: We divided it into a quadrant.

David: Things to do and things not to do.

AccountabilityBevin: Yeah. They were like, and it got super concrete and specific. It wasn’t like being nice to each other. It was as if we all agreed that if someone is uncomfortable or scared about something, they must tell others. It’s your responsibility to tell other people. We all agree that we would like whoever is least comfortable. The person who is most nervous about something will tend to listen to that person. So it’s not going to be like, oh, Aaron is worried about us going to the movies, but the rest of us want to go to the movies, so we’re gonna go to the movies. It was like, Nope. In that situation, Aaron is still worried about the movies, so that we won’t go. We have to all agree that it’s cool to go to the movies before we go to the movies. So we made decisions like that. We made decisions like, can’t hang out with the grandparents, or if you hang out with the grandparents, then you have to step away from the pod for a week. Like whatever. Yeah. Stuff like that. Like CDC guideline-informed. Sure. Yes. We all took it seriously ’cause it mattered that we had the support network. And I don’t know if we ever got sappy about it, but I think we abided by it because it was really important to us to have our friends be a physical part of our lives.

Bevin: We started the conversation by asking, ‘Why does it matter?’ Why does being together matter? Why does being in this community with each other matter? There’s no way we could have done it if we hadn’t been friends already.

David: It’s true.

Bevin: The pod stories about people just like podding up, like

David: with randos (random people).

Bevin: How convenient.

David: Why haven’t there been more movies about that? Probably because we want to forget that our kids will make them.

How are You Different?Health Hats: How are you different because you experienced that?

Bevin: For me, I think it was a pretty healing and powerful experience. I came from a pretty chaotic family life with a pretty disjointed family not a lot of extended family. And so, for me, I think it was lovely and affirming. And I got to experience a family I would have loved to have had as a kid.

Health Hats: You did it. I get that feeling when I travel. I went to Cuba. I did it. You know what I mean? David, how about you?

David: It was harder, maybe a little harder for me than it might have been for Bevin. Again, mainly because. Bevin has a bunch of siblings, but they don’t live close, and I don’t think any of our pod crew had other, like, physically close and very close family members except for Maggie’s mom. But again, it was really hard to prioritize literally and physically the pod over, like, my actual family. And that’s so

Health Hats: Was there learning in that?

David: No, but there was no learning in that. However, I suppose it was a learning experience; there was no ‘Oh, and we’ve all learned a great lesson about X, Y, Z.’ It wasn’t stated or explicit. I think it made me realize, like Bevin, that having a close and loving community is really important. Honestly, it also gave me a greater appreciation for my sister, whom I missed a lot, and my nephews and my brother-in-law, whom I also missed a lot. I wouldn’t make any other decision than the ones we made, but that was a real challenge. I also wasn’t great at communicating. I was, I think, better at expressing this internally or externally to my sister. Yeah. Okay. Externally. Yeah. I wasn’t saying, ‘Sarah, I’m going to, I’m going to catch up with this group of friends, and I’m really sorry.’ I know you’re probably feeling alone, and I’m not with you right now. I avoided that conversation, but I think that since I. The restrictions have come down. She’s also a nurse, so she was, to some degree, understanding because she was in the thick of the healthcare crisis itself.

But I don’t know. I just feel like my relationship with my sister has changed. The crisis, per se, ended better now. And that’s mostly because I realized how central that relationship is, and my relationship with my nephews, my brother-in-law, and my kids’ relationships with their cousins is really important.

Fortunately, that relationship has only grown stronger since Covid, and perhaps the absence makes the heart grow fonder. So maybe that. Paradoxically. Made the relationship stronger. That was a challenge for me. And yeah, it was like, I felt lucky. I still feel lucky. I also felt like I was repressing a lot at the moment. Like I feared, mostly. And, the anxiety, it’s just it was a time of high anxiety.

Health Hats: Do you have a baseline of fairly high anxiety?

David: Yeah, I do. And I think I keep it on the surface. It’s always right there. I do that on purpose. So I don’t have to feel that there’s something in the corner that I can’t see. I know that it’s there. It’s right in front of my face.

MealsHealth Hats: How’d you eat?

Bevin: We shared a ton of meals. We had Taco Tuesday. Which Ivy called Taco Tuesday night? On the regular, we probably shared, I don’t know. 3, 2, 3 meals a week. Yeah. Get together in different combinations with one another.

ChildcareBevin: Importantly, we hired a childcare provider.

David: Oh yeah. Was that what started in September, because that was when school started together?

Bevin: And we hired her to be with the kids.

Health Hats: So, how did you integrate her into the pod?

Bevin: We figured out her situation and explained our parameters. And she was able to agree to them.

David: to the best of her knowledge.

Bevin: I think it was fine. We all interviewed her all together.

Health Hats. That must have been a little intimidating.

Traveling TogetherDavid: That’s right. I think there’s more to the story here, which is that. The summer was excellent. I remember that summer being good because. Beautiful weather. We can be outside; you can be socially distanced. Yeah. And, still, have a great time. We went to Vermont that summer in a house that we still rent.

Bevin: Oh, that was awesome. That was the first trip. We’ve done it every year since. We’ve done it every year since. All of us went to Vermont. And Benny and Ally came to that, too. They did. That is correct. They slotted in with us. They were quarantined for a week in their pod and came to Vermont.

David: We were four. It was four families. That’s right.

Bevin: And that Vermont trip was in July, right? We took a week and went to Vermont together, and it was one of the happiest weeks of March. It was a lot of fun. It was just. Incredible. It was so joyous. We were so tight from what we’ve been through together. Yeah. We were thrilled to spend our vacation together.

David: In a beautiful spot.

Bevin: In a beautiful spot. It was, yeah. We’re going back there again this summer. We went there last summer.

David: Yep. And so this summer was wonderful. Yeah. And then September happened, and that’s

when we got the help. Because all of us. Have you had work, and the kids had school? It was a very strange arrangement, but we made it work.

School and WorkingSo, Bevin and Dave worked at their house, which, as I mentioned, is five houses away from ours. Meanwhile, all the kids were at our place. I don’t want to mention her name on the recording, but our nanny, for lack of a better term, was essentially in charge of managing all the kids’ Zoom sessions since Jasper and Audrey were in second grade. Ivy was in. It must have been kindergarten. And Edie was still in preschool while Ellie was in kindergarten. And so they all had their own Zoom meetings to attend. And I’m a teacher, and I had to do this too. And, but I will say God bless all the teachers who had to do the best they could in a really shitty situation.

Bevin: And our nanny’s main role for most of the day was to administer the Zooms, make sure the kids could get on, and keep paying attention.

David: And then there were snacks, lunch, more snacks, and lunch, etc. We had a slight rotation, so I was in my basement teaching on Zoom all day. And then there would be, like, each grown-up would take one lunch period. I think.

Bevin: No, she would do lunch, but she would leave at 2:30, and then we would take turns. Take turns taking care of all five kids. That’s right. Somewhere. Or doing something with them from 2:30 to 5. That’s right. And each parent would take a kid. Yes. We would rotate days. Those were cool. I remember taking them on different little adventures right after school, and there was one. I took them to Rock Meadow in Belmont. All five of them. It was probably November, a really cold, weird day. And the sun was just going down. It was like the sun was starting to set, and we were wandering around Rock Meadow, and this stag burst out of the bushes and just started running towards us. He reared up on his hind legs and then kept running. That’s cool. And I was standing there with these five kids. We were all just in awe. And it, I don’t know. And I’ll never forget that kind of moment—those unexpected adventures. There were also some horrible slogs after school.

Tough Times as a TeacherDavid: Yeah, those after-school moments or hours were tough. I think that we got into the rhythm. I will also say that it became harder as the summer turned to fall and fall turned to winter. And I had a really, hard winter, like a really hard winter. And then, I went back to school right after—winter break. So, on January 3rd, I was back at school and felt bad on two levels. One was that I had one less adult to do this. I didn’t have a choice. Like my job was back in session, so I had to go. And then I felt terrible because just when I started to feel okay with Zoom teaching, we went back to school. And they put us in a hybrid situation, where I taught four or five kids in person and the rest of the class on Zoom.

Every day, I went home feeling like the worst teacher in the world. Like I just couldn’t, I couldn’t do this.

Health Hats: My son Ruben had first graders. He said it was soul-sucking.

David: It was soul-sucking. It is the light way of putting it. I still resent the fullness and anger towards the administration of my district because they, in their instincts, were right. Let’s get these kids back into school. But it was impossible. They gave us an impossible task. Like I said, every day, I went home feeling like I was the worst teacher in the world. And everybody was feeling that way, too. However, there wasn’t enough community at that moment for us to say, ‘Oh, I guess everybody feels this way,’ because none of the administration wanted to acknowledge it. ’cause that would mean that, okay, now something’s broken. We need to do something about it. But I think that was really, incredibly hard. And again, the summer was wonderful, but winter was incredibly challenging for me.

Kids Loved ItBevin: Our kids, mind you. I think yours too. They remember those. They remember that year. That’s right. The best year of their lives. They think back on it so fondly. I remember I was. This summer, we were hanging out and going around the table, asking if you could live in any decade or historical period, which would you choose? And we all, oh, the sixties, like the whatever time of the dinosaurs. And my son was like, COVID times back when we were in the pod.

Health Hats: We were homeschoolers. And there are some similarities. And it wasn’t just our kids. We homeschool together with some others. And so I understand we came from the point of view we’re we’ll be damned if we’re sending our 6-year-old to a full-time job. That didn’t make any sense to us. And the kids. As you spoke with Simon and Ruben, they have a good memory, which is not about the time of tragedy, but I understand. I get where they’re coming from. Yeah. The kids are coming from.

David: It’s all, it’s also funny, so two, two things remind me, I’m reminded of two things. Number one, people who didn’t have kids thought that Covid was like the greatest time. Some of them, yeah.

Bevin: My siblings, who don’t have kids, had a great time.

David: Some of my colleagues who don’t have kids are like, “Oh my God, that was the best. Like we make bread.” Exactly. There’s so much time, all this time. And I’m like, oh man, we had no time. We had no time. Demoralizing. And then the second thing that made me think about it is that now I’m having a mental lapse. There are two things, but I’ll come back to the second one. The main thing is that, oh, the second thing is this: that students’ kids, like, ’cause I teach high school, we have ’em do a reflection essay at the end of senior year, and for the last three years, there’ve been essays about Covid times and, oh man, I’m so mad about this. All the kids in the class like to be with a person. There isn’t a single person who says anything different. COVID was amazing. I wanna go back to Covid. It was so awesome. I didn’t have to go to school. I could log on and not have to go because my teachers couldn’t require me to put my camera on, and I could play video games the entire day. And I did. People in education circles were like, these kids are traumatized. These kids have needs that require us to be very gentle when discussing this, as it might retraumatize them or cause other issues. And not a single student that I’ve ever read in a reflection from or heard from has said anything remotely close to trauma. They said, ‘That was the best; I want to do that again.’ What Jasper said, and it just makes me feel such a disconnect ’cause all of the adults that I was working with in my profession were like, these kids are so traumatized, and we have to treat them gently, and we have to make sure there’s a lot of self-reflection in what people think about other people.

Bevin: I mean that they’re pretty good data, you know. Mental health outcomes for kids. Yeah. Mental outcomes for children and learning. No, I know, but I get your point. I think the release of day-to-day responsibilities for many people was interesting. Yeah. Perhaps we don’t discuss that enough.

Belated IntroductionsHealth Hats: But I want to do intros again. Okay. So, who are you?

David: My name is Dave Weintraub. I live in Watertown, Massachusetts. I have two daughters, Audrey, who’s now 12 and was seven at the start of the pandemic. And Edie, now nine, was four at the start of the pandemic. And my partner is Jessica Middlebrook. And she’s with the kids right now.

Bevin: I’m Bevin Croft, and I live in Watertown. My partner is David Pereira. Not to be confused with David Weintraub, I have two kids, Jasper, who is 11 now, and Ivy, who is nine. I’m a policy researcher by day I work for a nonprofit. And yeah, we’re representing this family, we call it. A family of friends that is still incredibly close. Yeah. We text each other on a text chain pretty much every day, continuously, at least 10 times.

David: And I always feel bad I can’t respond ’cause I have terrible cell reception in my, at school, in my school.

Bevin: So yeah. We are part of a community that formed long before Covid but was strengthened and grew in some areas. Some new level of friendship. Yeah. During the pandemic.

David: Yeah. We’ve known each other for 20 years, and I’ve been friends with Maggie, who’s been in the pod since college; we were in the same dorm hall in the freshman year of college. And so those connections go back really far. And then another family that was not technically in the pod, Benny and Allie, like I’ve known Benny since I was a baby, ’cause our parents were friends. The connections in this friend’s family are truly deep, special, and unique. I don’t know how many people have such close, long-standing friendships that are still close. Yeah. You know what I mean?

Bevin: We’re very lucky. Yeah, that’s right. Very lucky.

Call to actionI now have one URL for all things Health Hats. https://linktr.ee/healthhats. You can subscribe for free or contribute to Patreon. You can access show notes, search the archive of over 600 episodes, and find links to my social media channels. Your engagement makes a significant impact through listening, sharing, liking, and commenting. Thank you.

ReflectionI love that the kids thought COVID time was the best, not an episode of high anxiety. Bevin and David’s story reinforces that governance is never-ending work, whether a pod or a nation. Leaders and participants change, culture morphs, communication improves or degrades, and power dynamics alter. I pick and choose what governance to participate in. My wife participates in town governance. I’m involved in the governance of my family, PCORI, and several committees and teams. I usually drop out when governance is poor, and I can’t impact governance without devoting more than 25% of my allotted time. I’ve learned that it’s not worth it. Trust is key. It’s currency. Negotiation and transparency depend on trust. These days I’m fascinated by AI governance. More to come.

Podcast OutroI host, write, and produce Health Hats the Podcast with assistance from Kayla Nelson, Leon, and Oscar van Leeuwen. Music from Joey van Leeuwen. I’m grateful to you who have the critical roles as listeners, readers, and watchers. Subscribe and contribute. If you like it, share it. See you around the block.

Related episodes from Health HatsArtificial Intelligence in Podcast Production

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Who needs Spanish when you’ve got a saxophone? A music-lover proves that disability access is just another improvisation in Havana’s jazz scene.

Best viewed as a video

Summary

Danny, Health Hats, chronicles his week-long trip to Cuba in January for a music-cultural exchange. Using a wheelchair and playing baritone saxophone, he traveled with a group of 11 from the States, organized by Dan Fox and Arlington MA’s Morningside Studios.

The group participated in a “Band Camp” hosted by the Havana Music School, receiving daily individual lessons, rehearsing in ensembles, and performing Cuban music at a restaurant. Despite Danny’s initial anxieties about traveling with his disability and instrument, he found Cubans accommodating and helpful.

The podcast features an interview with Claudia Fumero, manager of the Havana Music School, who discusses:

The school’s focus on teaching Cuban music to foreign visitors
How the business began and evolved from connecting students with teachers in their homes to having a dedicated facility
Her dream of expanding with more instruments and creating a small café where people can play music

The episode is interspersed with musical performances by the ensembles, including renditions of “Sofrito” and “Afro Blue” by Mongo Santamaria. The group also attended the Havana Jazz Festival each night during their stay.

Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below.

Contents

Table of Contents

Toggle Proem * Podcast intro * Blending Language and Culture * Havana Music School * Havana Music School – Morningside Studios Connection * Managing the Business * Managing the Stay * Employer of Musicians * Call to action * Dreams * Traveling with Disabilities * Why Cuba? * More Music * Reflection * Podcast Outro * Related episodes from Health Hats Please comment and ask questions:*

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, TikTok to @healthhats

Production Team

You know who you are. I’m thankful.

Inspired by and Grateful to

Dan, Peter, Ann, Sonja, Jeff, Deb, Bob, Richard, Pachy, Claudia, Gisselle, Miguel, Alejandro, Mauri, Leo, Adrian, Angelito, Lazaro

Links and references

Morningside Studios

Morningside Studio Tours

Havana Music School on Instagram

The Second Ensemble performance featuring Jeff Stout, Deb Larkin, Bob Salitsky, and Dan Fox

Havana Jazz Festival 2025

Sofrito by Mongo Santamaria

Mambo Inn by Mario Bauza

Afro Blue by Mongo Santamaria

Lagrimas Negras by Miguel Matamoros

Guantanamera by Jose Marti/JoesitoFernandez

ProemMusic is a world within itself, with a language we all understand. — Stevie Wonder.

My nighttime voices bombarded me. How can you go to Cuba as a musician? You’re not good enough. Your wheelchair won’t make it over their crumbling roads and sidewalks. Your horn is too big and heavy with everything else. You can’t do too many stairs. You don’t speak Spanish. You won’t be safe. I hate those deflating voices.

I should be excited about this chance of a lifetime. I completely trust Dan Fox, our guide and arranger. My disabilities do not define me. Helpful people are everywhere. I’m going with my partner of fifty years. We love music and culture. Who cares about politics?

What the heck? We went. Welcome to the story of our adventures.

Blending Language and CultureMusic alone can abolish differences of language or culture between two people and invoke something indestructible within them. — Irene Nemirovsky.

Eleven of us from New England and Houston traveled to Cuba for a week in January for a music-cultural event—a Band Camp organized by Dan Fox and Arlington, MA’s Morningside Studios. Our group ranged from no Spanish (me) to fairly fluent (Sonya and Dan). Our host, the Havana Music School, was also fluent in English along this same continuum. Consequently, we communicated in three languages: Spanish, English, and Music. Few people were fluent in all three. My teacher, Pachy, and I managed well with some help from translation, pantomimes, and trial and error. We enjoyed exchanging knowledge, with me teaching him about’ herding cats’ and ‘God willing and the creek don’t rise.’ However, we had difficulty when he spoke about ‘black notes.’ I thought all notes were black, and he meant that quarter notes were the black ones.

The Morningside Music Studios group traveled to Cuba for a week of music. Hosted by the Havana Music School, we enjoyed two hours of individual lessons daily, followed by two hours of rehearsals with students and teachers in two ensembles working on five tunes. We did some sightseeing in the afternoons and attended one venue of the Havana Jazz Festival each night. The week culminated in the ensembles’ performances at a local restaurant. Since the Havana Jazz Festival had concluded, many local musicians attended our performance, cheering us on and joining in to sing.

This episode is an unpolished mix of photos, videos, and social media posts about our music, sightseeing, Airbnb, and the Havana Jazz Festival. I suggest watching the YouTube video for the best experience.

We’ll begin with an Instagram post about our luxurious accommodations in Havana, close to the Music School. The music background is Mambo Inn by Mario Bouza. Link in the show notes. https://www.instagram.com/p/DGY2KtJRCNZ/

We’ll follow that with the ensemble’s performance of Sofrito by Mongo Santamaria, then a conversation with Claudia Fumero and my wife, Ann Boland. https://youtu.be/yCXa7IGtBIw

Havana Music SchoolClaudia Fumero and her husband, Miguel, own and operate the Havana Music School. We recorded the audio of our conversation about the school. My wife, Ann Boland, assisted with some translation. This episode’s video includes photos and clips of our fellow students and teachers, along with a tour of the old city. https://health-hats.com/pod233.

Health Hats: So Claudia and Ann, thank you for being here with us. Claudia, introduce yourself and tell us where we are.

Claudia Fumero: My name is Claudia Fumero. I come from Cuba, and I have a music school—the music school shares Cuban music and Cuban culture for foreigners.

Ann Boland: Sharing the culture that was part of music for foreigners. Plus, she probably figured Americans would listen to this, which would be good for their school.

Health Hats: Okay. So is the school for foreigners only?

Claudia Fumero: Yeah. Now at this moment, it’s for foreigners.

Health Hats: Yes. And foreigners who are not Cuban can be anywhere.

Claudia Fumero: Yes. Yeah.

Havana Music School – Morningside Studios ConnectionHealth Hats: So we’re here with a group with Dan Fox that has had a relationship with you guys for some time. And how long has that been?

Claudia Fumero: I think it’s mostly four or five years now. Yeah. Yeah. Because yeah, he wrote us our, because we are the website. Then he writes us.

Health Hats: Oh, the school is HavanaMusicSchool.com. Yes. Okay. So anybody can see it? Yes. I understand you have an Instagram page, too.

Claudia Fumero: Yes. The same, @HavanaMusicSchool.

Health Hats: We’ll have to check that out. Yeah.

Managing the BusinessWhat’s your role? What’s your job?

Claudia Fumero: Now, in this moment? I’m the manager. Yeah. Okay. And I’m teaching salsas, too. Now I respond to every email, uh, yeah. I call, uh, the teacher. Yeah, yeah. Arrange the lessons. Yeah. Okay. For the student. Sometimes, they came for two hours, one hour, or for more time. Maybe one week, one month. It depends on the students, but now I think the people came more for a short time. Maybe two hours, one hour. Yeah. It’s the now in this time.

Ann Boland: Yeah. Just trying to try it out. Maybe just,

Claudia Fumero: I don’t know, maybe the travel is changing. The world is changing. People don’t have a lot of money and spend a lot of money. I don’t know, maybe it’s a big…

Health Hats: It’s a big deal being a businessperson. The business is you and your husband. And so, um, how did you decide you wanted to do something like this?

Claudia Fumero: Yeah. First, uh, the idea for the school was my husband, Miguel, yeah. He went to, we met, and he wanted to stay in Cuba, and he thought, I need to do something to stay in Cuba with you and create the school. In the beginning, the teacher, the student going to

Ann Boland: Oh, they went to the teacher’s house.

Claudia Fumero: The teacher’s house. The first and after, we create the space with the instrument for the teacher and the students.

Health Hats: The germ of the idea, the beginning, was being the connector. Yeah. Between students and teachers.

Claudia Fumero: Exactly. Connect

Health Hats: the student with the teachers. Okay. And at first, they went to people’s homes. Yes. Teachers’ homes. Yes. And then I can see that, especially if the group gets large. Mm-hmm. Or your, yeah. It’s much nicer to have a place.

Claudia Fumero: Exactly. So

Health Hats: Then, was this the first place?

Claudia Fumero: We start in another area of Havana but in a small house with two rooms. But it was very nice because, at the beginning, Obama came to Cuba, the country was opening, and many people came. Cuba was interesting in the experience, uh, for. Was amazing.

Managing the StayHealth Hats: Okay. And then it got big, and it felt like you were successful. Yeah. And the price of success.

Yeah. I did. Being of a bigger play, I think, I know for me, I play bari sax, and I was like, oh, I’m bringing my chair and all my equipment. Anyway, you guys found one for me to rent. Mm-hmm. Yeah. And so, is that a usual thing when you find instruments? Yeah. For people who are traveling to play while they’re here?

Claudia Fumero: The same instrument is difficult to find in Cuba or buy because we have the percussion, conga, maraca, and claves. However, some specific instruments are difficult to find or buy in Cuba. We don’t have many courses on sax because we don’t have a sax, for example. The people came here mainly for the percussion and guitar. We have that, but we don’t have, or maybe sax, violin, or cello only. We have the big one, contra, double bass, and piano.

Health Hats: Okay. And so do you also. Do you help with people’s arrangements for the rest of their lives while they’re here?

Claudia Fumero: Sometimes, we arrange the apartment for the stay, Airbnb, or something like that. But it’s common. Sometimes, people arrange their own lives.

Health Hats: Is business good?

Claudia Fumero: Yeah, it’s good, but we have the country’s tourist site seasons. For example, the Cuban winter is the high point for tourists this season.

Employer of MusiciansHealth Hats: Also, you’re an employer for musicians.

Claudia Fumero: Yeah. I think it. Um, the musicians have a very high level in the associated. They have a lot of work. If you are, if the musician is good, it’s the

Health Hats: the middle group, the,

Claudia Fumero: It’s very nice.

Health Hats: People who are professional but not stars.

Claudia Fumero: They can play out in a lot of places.

Claudia Fumero: Yes, yes. Yeah. For example, maybe in the United States, a big country, you are a musician, but in Cuba, you are a musician. It’s huge? I am a musician.

Health Hats: Oh. How has this process of having this school affected you as a musician and an actor?

Claudia Fumero: Yeah. I love the Cuban music. Okay. I love my culture. I love the Cuban music. Um, Miguel is a musician, it’s not for professional musicians, but he likes studying music. And for us, it’s not difficult. Yeah. Because we always hear music. In the musical, we are surrounded by music.

Claudia Fumero: Yeah. I don’t need to play the instrument to contract with other teachers.

Call to actionI now have one URL for all things Health Hats. https://linktr.ee/healthhats. You can subscribe for free or with a contribution through Patreon. You can access show notes, search the 600 plus episode archive, and link to my social media channels. Your engagement by listening, sharing, liking, and commenting makes quite an impact. Thank you.

DreamsHealth Hats: If you were king for a day, you could do something with the program. No barriers, no money worries, no government worries, no social worries. What would you do differently with the school?

Claudia Fumero: I think I may contract teachers and buy more instruments. Yeah. We could do ensembles for a lot of people.

Health Hats: And maybe like a small theater.

Claudia Fumero: I dream of a small coffee shop where you can come to play music.

Health Hats: Okay, good. I love it. Okay, so is there anything you want to ask us?

Traveling with DisabilitiesClaudia Fumero: Uh, yeah. Um, how, how do you travel and do the music? Just that we are talking about You are my wheelchair. Yeah. And regarding the music, how do you ensemble it with the sax? Yeah. It’s amazing how well,

Health Hats: One is I really wanna do it. So that’s motivating. And then, I have two people that help me figure out how to do it. And my wife, we think a lot about, okay, where am I at? How, what, and how do I manage this? Then, I studied with a man, Jeff Harrington, who is at Berklee. And I’ve been studying with him for 16 years, I think.

And so he knows me. He knows that my abilities change physically, and he’s very sensitive to that, and I just can’t do it. But I love the bari, and everywhere I’ve been, people are so helpful, and it didn’t take me long to get over the fact that I needed help from people. If you’re a nice guy, show up, and do the work, people will always help you.

Why Cuba?Claudia Fumero: Why did you decide to come to Cuba with Danny?

Ann Boland: Why did I decide to come to Cuba? I like to hike. And we have friends that we hike with. And so Danny comes along on our hiking trips. d so I thought, oh, and then we try to work it out so he can also participate in things. But I thought, okay, here’s an opportunity for Danny to do something he likes. Yes. And so I will come along with him.

Health Hats: We share interests. I think it’s also. I wasn’t interested in hiking the Grand Canyon. You know, the Grand Canyon?

Claudia Fumero: Yeah.

Health Hats: There’s no way I couldn’t sit on a donkey, but Ann loved this music once they were thinking about something I could do. So music, that’s one of our bonds. Is music. It has always been, and we’ve always enjoyed good music. It wasn’t her thing.

Ann Boland: I like music a lot. I’ve enjoyed all the concerts and meeting people from different cultures. So, it wasn’t his interest. I knew I would enjoy it.

Claudia Fumero: Yeah. And Cuba, you are thinking about Cuba with the, because you travel a lot.

Health Hats: Yeah.

Claudia Fumero: And Cuba. If you were thinking of traveling to Cuba or the opportunity is, and you,

Health Hats: I heard from people who’ve traveled to Cuba, and there were a couple of people who came here 10 years ago with Dan that I played with, and so they, and we’ve been interested in Cuba just ’cause the national relationships are so bizarre.

Now I’m talking for me. There’s a difference between how governments and people get along. And especially when there’s something culturally and common like music, and everywhere we’ve ever been. There are jerks everywhere. Mostly, people are just lovely. And here people have been so helpful. Even just at that, the concert last night, when it was full, said, put out a seat for me. Yes. Ann came along. She was gonna sit by the wall, and the guy just stood up and sat here, and people have been. So accommodating and sensitive. And I love that. I like people, and I like different people.

More MusicNext, another Instagram post about our percussion workshop near the beach..https://www.instagram.com/p/DGgq–qsthP/ Then a tune from our gig, Afro Blue, composed by Mongo Santamaría, the renowned Cuban percussionist. He first recorded the piece in 1959 while playing with the Cal Tjader Sextet, and it quickly became a jazz standard notable for its use of African cross-rhythms. Links in the show notes

Reflection“Music is closely intertwined with the life of every race. We understand the people better if we know their music, and we appreciate the music better if we understand the people themselves.” — Frances Densmore.

My gradual awareness of Cuba began when I was ten years old during the Cuban Missile Crisis, involving JFK, Castro, and Khrushchev. In my teenage years, as I became politicized by the War in Vietnam, I learned about the US-supported Cuban dictator Batista and the revolutionary Che Guevara. In my fifties, I started listening to Ry Cooder and the Buena Vista Social Club, an Afro-Cuban band.

I need to interject here to express my appreciation for all the thoughtful assistance I received. In particular, Lazaro, our van driver, figured out my capabilities during the first drive: How to fold and unfold the chair, how to best assist me in and out of the van, and what to alert me to watch for in whatever place we left the van to eat, sightsee, or play. Pachy, Gisselle, Claudia, teachers, and fellow students acted as my roadies, scouts, and safety checkers. Estoy agradecido.

I hope you feel the energy created.

Podcast OutroI host, write, and produce Health Hats the Podcast with assistance from Kayla Nelson and Leon and Oscar van Leeuwen. Music from Joey van Leeuwen. I play Bari Sax on some episodes alone or with the Lechuga Fresca Latin Band. I’m grateful to you who have the critical roles as listeners, readers, and watchers. Subscribe and contribute. If you like it, share it. See you around the block.

Related episodes from Health Hats

Playing Baritone Saxophone with Disabilities. Can Be Done!

Life without sax? Adapt to changing abilities.

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This metaphor portrays critical national systems dismantled by dangerous, disconnected actors, suggesting irreversible damage requiring collaborative rebuilding

Featured on Health Hats Podcast Connect: dannyhealthhats@gmail.com More resources: https://linktr.ee/healthhats

Join us in exploring how health, love, power, and agency work together as we navigate these challenging times. Subscribe for more insights on healthcare advocacy and personal growth!

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Production Team

You know who you are. I’m grateful.

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Inspired by and Grateful to

Jan Oldenburg, Amy Price

Links and references

Tower of Jenga from https://datakosine.com/fi/20-must-know-jenga-vinkki%C3%A4-tule-parhaaksesi/

Stock market image from https://www.theguardian.com/business/live/2025/apr/08/stock-markets-nikkei-dow-ftse-100-asian-market-today-trump-china-tariffs-threat-business-news-live-latest-updates

Other images in videos created in OpenArt AI

EpisodeDid the United States vote to host a nationwide Jenga tournament in November? I’ve seen hundreds, if not thousands, of Jenga games occurring since the inauguration.

Created in OpenArt AI

Each puzzle is a foundational pillar holding up the skyscrapers of health care, national security, social security, research, trade, and education.

Each pillar represents information technology, communication, workflow, relationships, institutional history, and customer relations.

Created in OpenArt AI

The game players seem to be aliens using Virtual Reality glasses with machetes. What could go wrong?

World wide stockmarket April 4. 2025

Iamge taken by Jan Oldenburg

The destruction can’t be fixed or repaired, but we can rebuild it from the mold and decay. ‘We’ means you and me together.

Created in OpenArt AI

Related episodes from Health Hats

Navigate Chaos, Adapt Our Voices, Leverage Privilege

Foreboding and Morbid Curiosity

Artificial Intelligence in Podcast Production

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Data scientist Emily Hadley on navigating AI in healthcare, offering practical advice for maintaining patient agency amid algorithmic decision-making.

Summary

This interview with data scientist Emily Hadley examines the intersection of artificial intelligence and healthcare through a deeply personal lens. Hadley’s journey began when her own health diagnosis coincided with her graduate studies in analytics, revealing how algorithm-driven systems often affect patient care—especially through insurance claim denials and clinical documentation. The conversation offers practical guidance for patients navigating AI-influenced healthcare, including reviewing AI-generated clinical notes for accuracy, challenging algorithmic insurance decisions, and insisting on human intervention when automated systems fail. Hadley advocates for preserving patient agency and rights within increasingly automated systems while highlighting how algorithm review boards are striving to provide governance in this largely unregulated space. The interview concludes with resources for staying informed about developments in healthcare AI, emphasizing that while AI tools are rapidly advancing, patient advocacy remains vital.

Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below.

Contents

Table of Contents

Toggle Episode + Proem + A Data Scientist Awakes + Building Guardrails with AI Governance + Hallucinations and Validation with AI in Research + Prompt Engineering-Conversational AI + Verification and Vigilance + Staying Informed + Reflection + Related episodes from Health Hats Please comment and ask questions:*

at the comment section at the bottom of the show notes
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via email
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DM on Instagram, TikTok to @healthhats

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Eric Pinaud, Laura Marcia, Amy Price, Dave deBronkart,

Links and references

Prompt Engineering

Algorithm Review Boards at RTI

Dave deBronkart’s Patient’s Use AI

EpisodeProemThis year, I switched from Medicare Advantage to Traditional Medicare. I still needed to purchase a supplemental commercial plan to cover what Medicare Part B didn’t. However, the supplemental commercial plan denied some services the previous Medicare Advantage plan covered. Why? What algorithms did each plan use to determine coverage? How can I manage this?

Welcome to the third installment of Artificial Intelligence Can Work for You. We’ve explored how I use AI in my podcast productions and delved into some AI basics with Info-Tech leader Eric Pinaud.

I asked Emily Hadley, a data scientist at RTI specializing in AI algorithms for insurance coverage decisions, to join us. Early in her graduate studies, Emily was diagnosed with Crohn’s disease. This led to her interest in studying insurance algorithms.

A Data Scientist AwakesHealth Hats: How did you gain expertise in AI?

Emily Hadley: Great question. I was diagnosed right as I started a graduate program in analytics. In my undergraduate studies, I studied statistics in public policy. I liked the idea of using data to shape how policymakers make decisions, especially in the US. I had done some work with AmeriCorps and then went to grad school to really hone those skills. Being diagnosed at the same time that I was in grad school meant that I was navigating to new, informative, and educational areas. And I think that that’s when I really came to realize the power of data and the power of AI in shaping the way that organizations and people make decisions. We live in a really algorithm-fueled society. We constantly encounter technology and AI systems, even when we don’t realize it.

An example I give is that I’ve faced many problems getting insurance to cover the things it is supposed to. I didn’t realize until a couple of years ago that this is due to many insurers embracing algorithm-driven decision-making systems that often automatically deny coverage for services that should be included. Instead, they might say they don’t cover it because the appropriate code was not included when billing. So, the provider claims, ‘ Oh, we don’t cover that because the code was missing, ‘ even though it should have been included. I feel as though I’ve been a victim of some of these automated systems, which have significantly impacted my life and pushed me to understand that these AI systems are not hypothetical. We live with them every day, and we don’t have a lot of insight into them as consumers or citizens. And that really pushed me into this responsible AI space of thinking. How do we develop and use algorithms that align with how people would treat each other? Not necessarily how algorithms and robots would treat each other.

Health Hats: Are you saying that this is a way to be more transparent about what’s in the algorithms?

Emily Hadley: That’s a piece of it.

Building Guardrails with AI GovernanceHealth Hats: In something you sent me to educate me more about what you’re doing, you talked about algorithm review boards, and I was trying to picture them. Who’s around the table? Can you tell us a little bit about what an algorithm is? Is it real? Is it theoretical?

Emily Hadley: Yeah, I’ll launch right into it. I’ve been passionate and interested in this since I saw more companies embrace AI, especially in the United States. States don’t have laws to guide how companies, academic institutions, nonprofits, and government organizations use AI. Certainly, some legislation and rulemaking is probably coming, but in the absence of it.

Organizations need to decide how they will manage AI from a risk perspective. This includes reputational risks to the organization, its customers, and the population at large. Also, from an equity and justice perspective, how can AI systems align with our organization’s mission and values?

One of the things that I started noticing at my own organization was that we have something called the Data Governance Committee, which existed before ChatGPT became a big thing and before everyone talked about AI. The data governance committee was focused on how to protect data on the projects that we work on. Many projects involve private health information or other personally identifiable information. We need to ensure that even before GPT, we didn’t want to upload this information to the cloud or expose people’s data in a way that was not permitted.

This group has also adapted to become an AI review group. So, when someone at our organization wants to use AI in their projects, I recently wanted to use AI to help summarize some text responses that we were working on. Before I moved forward, I needed to check with the data governance committee to ensure that it aligned with RTI policies and that I was using the data in a protected and secure way.

I assumed, and this research confirmed, that other organizations are doing the same thing. They are putting together groups of people, especially in the finance and health sectors. To your point, they don’t all look the same. Every organization is doing what works for them.

At my organization, the data governance committee includes our corporate council staff members, ethics officer, data privacy officer, and a couple of subject matter experts like myself, who bring a lot of different data or research pieces to the table. Finance organizations, especially banks, have had a long history of risk assessment committees for various credit scoring or lending algorithms.

They’re mostly adapting a group, sometimes adding some new AI expertise, but a lot of that expertise is already in-house. I would say the health groups have done some of the most interesting and innovative work in this space because this type of review is new for many of them. It’s similar to some FDA-type review work they’ve done.

Health Hats: Or IRB review.

Hallucinations and Validation with AI in ResearchEmily Hadley: Exactly. As part of this research, we investigated whether IRBs could do this work. And what we heard was actually a resounding no, they did not consider.

Health Hats: it’s a different focus. I’ve been on an IRB, and there is this business of being a generalist, so there’s value in having a generalist or two generalists in a group of many experts. Okay. So, what do you think the role of consumers is on review boards and algorithm review boards?

Emily Hadley: I’m noticing a focus on affected communities, especially in the health sector. This includes patients and clinicians, particularly those engaged in the work. It’s not an algorithm review board but for the long COVID research you mentioned. We have patient representatives involved in all of our manuscripts. I was just at a clinician review meeting last Friday, and it’s incredibly helpful to have someone provide insight when determining whether we prepared this methodology correctly. Are these initial results what you expected? Do you feel you have a say in this process and how it’s being developed? I’ve also observed tech companies embrace that level of stakeholder involvement. It’s more consumer driven. They want to create products that people will use. However, I am encouraged to see the participation of affected communities because I believe that’s where many revelations occur.

Health Hats: Let’s take a step back. What kinds of AI are used in research?

Emily Hadley: Yeah, that’s a great question. In research, we see it using a couple of different areas. One of the biggest is information gathering, extraction, and summarization. We’ve been using it for literature reviews to help summarize or get key points out of particular papers. We’ve been excited that it allows people with different educational or literacy backgrounds to interpret papers. It can be really frustrating to work with a peer-reviewed publication where you’re like, I don’t know what it means here. So, some of the generative AI summarizations have been helpful. Another area we’ve seen some work in is when I mentioned this free text response.

I am coming up on a project right now where we’ve got some Reddit data that we’re trying to summarize with ChatGPT. Then, another generative AI model and some of our biggest problems are related to hallucinations. You probably have heard of these, where the models make up stuff that seems right but isn’t there. And then related to that is validation. And I think that’s an area that requires more consistent methods. And there isn’t a lot out there that says this is how you validate the output from a generative model in this context. So, right now, we’re manually reading through the ChatGPT summary and then going back to the original data. We’re like, okay, is this thing that was mentioned in the summary? Also, in the data, we find some really interesting things, like in our data. Somebody mentioned going to grad school, but in the summary, they said somebody graduated from grad school but didn’t say they graduated. They just said they went.

Health Hats: That’s a small but big thing.

Prompt Engineering-Conversational AIOne of my friends, Amy Price, is a researcher at Dartmouth, and she does research in both engagement and AI. What she’s been preaching and teaching, and what I’ve been learning from her, is to treat my prompts as a conversation. I have grandkids, one of whom is a debater. He has to take opposite sides and defend opposite sides of the question. So, when I’m with him, and he’s espousing some political opinion, I’ll ask him, if you were going to debate against that, what would you say? And so I’ve been thinking about that and trying with some of my queries to say, okay, if you are going to disagree with what you just said, what would you say or to try to figure out like to treat it as a conversation and think about if I have my critical thinking hat on how if it was you, Emily, that I’m talking to. I’m skeptical and don’t want to call you a stupid jerk.

So when you think about that, are you thinking about, on the one hand, how to do it manually, and then the next step is how to create the following query to ask it? Yeah, I don’t know. I’d like to say more about that.

Emily Hadley: Yeah. What you’re getting at is the field of prompt engineering, and so it’s this idea of prompt engineering.

Health Hats: Someday, that’ll be a different hat.

Emily Hadley: Exactly. Exactly. And it’s your exact point. It’s figuring out how to structure your prompts to get back the answer you want or, on the flip side, an entirely different answer. Prompt engineering is a field that is also rapidly changing. It feels like some of these AI groups are releasing new models once a month, and when a new model comes out, it might disrupt all of the prompts you’ve written to that date. And so you have to reconfigure. It creates a lot of transparency problems and replicability problems. We put out a paper in a journal earlier this year that I think the model isn’t available from Open AI anymore, right? They discontinue these models, and they no longer support them. So, if somebody wanted to duplicate what they did, what we did in that paper, they could use a similar method. But it’d be hard to get the same results because the model no longer exists.

Health Hats: I never thought of that. Oh goodness, it is a challenge from a scientific perspective. Oh, man. That’s, it’s like a political change.

Emily Hadley: Yeah, exactly, and the models can change pretty drastically between releases as well.

Health Hats: What’s an example of a change? I’m having trouble. I get the idea. I can’t picture it, really.

Emily Hadley: Sure. So, one example would be when ChatGPT first came out, people asked for citations and a link to the source. Oftentimes, it would entirely make up that this person wrote this paper and they didn’t write it at all. In recent models, GPT has become internet-compatible so that you can search the internet for real links and accurate citations.

That’s not to say we’re not seeing those hallucinations at all, but they certainly have improved in more recent versions of that model. Now, if you ask it for a list of sources, you’ll probably get back actual, real papers rather than the ones that it made up the first time around.

Health Hats: The one experience I’ve had. This was a while ago, and I was trying to create an image of someone getting their blood pressure taken. It wouldn’t go through; they wouldn’t answer the question. It turned out that the word blood was banned because they didn’t want gory content. When I typed in sphygmomanometer, I could get a picture of someone with a blood pressure cuff.

Verification and VigilanceI’ve been to three or four conferences in the last two months, and I find people proselytizing for AI like it’s an AI cult and the solution to everything. And then some people are suspicious and don’t trust it at all. So, what do you think of the curious consumer? What should we be paying attention to as we use these tools supposedly to help us make decisions about our health?

Emily Hadley: Yeah, that’s an excellent question. I think folks will want to pay attention to a couple of things. One of the first ones is. New places that you’re seeing AI being used and recognizing the opportunity to opt out. One of the recent interesting cases has been the automated AI transcription of doctor’s notes.

We’re coming out of appointment sessions, and in theory, your hospital is supposed to disclose to you that they use the system and that an AI system autogenerated the notes. You should also know that those are wrong in some cases. Wrong in almost every example that has been tested, and yet it’s still being deployed in real-world settings because there’s not a lot of restriction since it’s not in a clinical setting. Still, it’s not affecting something about somebody interacting with your body at that point in time. And so I, I would encourage people to review their doctor notes, especially if they generated and catch errors where they’re wrong and follow up with your practitioner about it

Health Hats: There are many errors in what’s written, too. For me, the best clinicians are the ones who talk out loud while they’re writing their notes, and they say, “Let me know if I got something wrong or I’m not clear,” and then it’s right because I don’t remember when I got home. And I really appreciate that. I could say no, I’m taking blah, blah, blah. Or I’m not taking that ’cause it gives me a belly ache, or that wasn’t my history. That was my wife’s history

Emily Hadley: Yeah.

Health Hats: Then we will fix it right away. But that’s the rare clinician.

Emily Hadley: Yeah, exactly. Those historical notes can become very important when managing a condition over time. Therefore, I believe you are the best advocate for your patient notes, which is frustrating. I don’t think it should necessarily be this way, but, you know, that’s how it has turned out.

Health Hats: actually. Wow. All right. What else?

Staying InformedEmily Hadley: Yeah, sure. I mentioned insurance earlier. Educating yourself on how insurers are using algorithms is a somewhat unregulated space, so they are just jumping in and saying, yes, we’re just going to use algorithms instead of having a person review the billing. You get all of these things that you shouldn’t be billed for. I was shocked by how insurance companies do this with limited personal intervention and similarly pushing to talk with someone whenever possible rather than a chatbot. I have personally found that the chatbots have not been particularly helpful in my experience.

I worry about AI taking away people’s agency, especially in healthcare. And I think I would love for people to continue to know that you have a lot of rights as a patient. You have many rights when dealing with an insurer, and an AI system cannot take those rights away from you. You should continue to exert them, not pay for things you’re not supposed to pay for, and get the treatment you deserve. And I’m hopeful that some of the incoming government rules and regulations will recognize that and push to maintain the person’s importance in a healthcare system.

Health Hats: Where do you like to go when working with colleagues in this space and learning yourself? What groups do you find that appreciate your contribution and keep you up to date?

Emily Hadley: You mentioned conferences. We’re seeing more and more conferences grow in this space. I was at Academy Health earlier this year. We had some great AI conversations.

Health Hats: Which one?

Emily Hadley: Academy Health’s research one. I am a member of ACM, the Association for Computing Machinery, the acronym IEE.

Health Hats: Those are big, like data science and computer science groups, but they have been doing a lot to push for standards in the health sector. And I enjoy being part of those groups. Then, from the US government, I pay a lot of attention to what NIST is up to. That’s the National Institute for Standards and Technology, I want to say. They also led the way in developing a whole bunch of AI resources for the US government. FDA, which plays a significant role in the medical space, has adopted much of their work. And so I’ve been excited about what I’ve seen coming out of them.

Thank you so much. This has been great.

Health Hats: All right. Take care of yourself.

Emily Hadley: Thanks, Danny. Have a great afternoon.

ReflectionWhen I asked Emily to speak with us, I hoped to feel less overwhelmed about AI. If I kept this episode solely in the AI bucket, I failed. I’m beginning to sense that I know less than I thought before. However, if I included it in my advocacy bucket, I succeeded. I have some new tools. I can always utilize a new tool. Whether managing chronic pain, attending to my safety, advocating, or podcasting, I find that I need at least three tools in my toolkit. Nothing works every time. Nothing works for everyone. Three is the magic number for tools to feel confident that one will be effective.

Emily encourages us to pay attention, use common sense, continue learning, and advocate for ourselves in person. If I have any energy, I can do what is necessary.

How do you use AI to manage your health and care? What opportunities and challenges do you face? To join our chat, please open the Substack app or visit substack.com/chat on the web. Navigate to Health Hats publication’s chat section to participate in discussions.

Related episodes from Health Hats

From Dick Tracy to AI: Out of Mind to Beyond Mind

AI: Neither Artificial nor Intelligent. Useful and Sobering

Artificial Intelligence in Podcast Production

Creative Commons Licensing

CC BY-NC-SA

BY: credit must be given to the creator. NC: Only noncommercial uses of the work are permitted.

SA: Adaptations must be shared under the same terms.

Please let me know. danny@health-hats.com. Material on this site created by others is theirs, and use follows their guidelines.

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The post Healthcare AI for Humans: Governance, Research, and Rights first appeared on Danny van Leeuwen Health Hats.

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A child of Holocaust survivors balances pathological optimism with apocalyptic thinking while seeking meaningful ways to channel advocacy in turbulent times.

Summary

In this deeply personal episode, a child of Holocaust survivors reflects on navigating today’s global chaos while maintaining hope in healthcare. As a seasoned healthcare advocate, they share insights on:

Leveraging privilege for positive change
Finding balance between optimism and realism
Adapting communication strategies for greater impact
The importance of self-care and community support

Key highlights:

Moving from long-form monthly interviews to shorter, more frequent content
The role of music as a healing force
Following Helene Epstein’s “Patient No More” insights
Special music feature: “The Weight” by The Band with Ringo Starr and Robbie Robertson

Featured on Health Hats Podcast Connect: dannyhealthhats@gmail.com More resources: https://linktr.ee/healthhats

Join us in exploring how health, love, power, and agency work together as we navigate these challenging times. Subscribe for more insights on healthcare advocacy and personal growth!

HealthcareAdvocacy #PatientVoice #Healthcare #Podcast #SelfCare #CommunitySupport

Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below.

Please comment and ask questions:

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, TikTok to @healthhats

Production Team

You know who you are. I’m grateful.

Podcast episode on YouTube

Inspired by and Grateful to

All of you

Links and references

Helene Epstein’s Patient No More Chapter 2: The Very First Thing You Should Do, Today

EpisodeProemGreetings, I’m trying to make sense of the chaos and disruption all around the U.S. and the world. I struggle to focus and direct my energies. I doom scroll, fret, and get mad at myself. As a child of holocaust survivors, my pathological optimism collides with my apocalyptic thinking. I’m afraid for our safety, health, and care. We need teams, organization, trust, and protection more than ever.

Leverage PrivilegeComing home from Ann and my inspiring trip to Cuba, I feel overwhelmed by our privilege. We live below our means and have no dependents. Our mortgage is paid off, and we’re in love. I have all the toys I need. I can take calculated risks. I don’t need a black market – yet. I’m seasoned, connected, and as healthy as I can be. My superpower is accepting what is and adapting. I have a platform and understand the infrastructure needed to support action promoting best health and care, whether adapting or resisting. How I miss Mighty Casey Quinlan!

Rebels in HealthMy friends and colleagues, our work must continue—whatever we can manage minute to minute. We know many people and are skilled at what we do. Susannah Fox says in Rebels in Health that we are seekers, networkers, solvers, champions, and communicators (my add). That’s the mix of Rebels in Health we need right now.

NavigateI’m oriented to action. What action? Where and how should I increase my presence? Where do my peeps share information – Substack, LinkedIn, YouTube shorts, Instagram, TikTok, Medium, Patreon, BlueSky? Yikes!

I’m connected to a network of podcasters. How can we leverage and channel our voices? I can and will assist rebels and champions when and where I find them.

I’m staying in the health and care space. It’s what I know and where most of my hats are. Health, love, power, and agency fit together – hand in glove.

AdaptHow can I adjust my practice patterns and focus during this chaotic time? I will reduce my long-form work—monthly 30–60-minute interviews with time-consuming multimedia tentacles—to shorter form, more often, to enable more time for listening and caring.

Self-care rules. Music, a healing force, stays, even increases. I need joy, celebration, and rest every day. I need inspiration (you).

Call to actionWhat do you do for self-care? How can I support you on these platforms? Feel free to reach out to me on any platform or medium. I’m here to listen and will do my best to respond. While I figure out the best channels, you can email me at dannyhealthhats@gmail.com. As usual, you can find everything Health Hats here https://linktr.ee/healthhats.

Music for the SoulToday’s music selection is The Weight by The Band Featuring Ringo Starr and Robbie Robertson | Playing For Change | Song Around The World.

Voices for the MindI’m following Helene Epstein’s Patient No More Chapter 2: The Very First Thing You Should Do, Today. The easiest weapon against misdiagnosis is in your phone.

Podcast OutroI host, write, and produce Health Hats the Podcast with assistance. I’m grateful to you who have critical roles as listeners, readers, and watchers. Subscribe and contribute. If you like it, share it. Love ya, see you around the block.

Related episodes from Health Hats

Foreboding and Morbid Curiosity

50 and 70. Connection and Age. Spiritual Strength.

Mighty Casey Quinlan Unplugged #3

Artificial Intelligence in Podcast Production

Creative Commons Licensing

CC BY-NC-SA

BY: credit must be given to the creator. NC: Only noncommercial uses of the work are permitted.

SA: Adaptations must be shared under the same terms.

Please let me know. danny@health-hats.com. Material on this site created by others is theirs, and use follows their guidelines.

Disclaimer

The post Navigate Chaos, Adapt Our Voices, Leverage Privilege first appeared on Danny van Leeuwen Health Hats.

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Philip Shadle, CEO, Aimee Copeland Foundation opens outdoor accessibility for disabled individuals with all-terrain wheelchairs. My endorphins flow. Yeehaw!

Summary

This podcast episode features an interview with Philip Shadle, CEO of the Aimee Copeland Foundation, discussing the transformative impact of all-terrain wheelchairs on accessibility and outdoor experiences for individuals with disabilities.The podcast underscores the importance of accessibility and inclusion in outdoor activities, celebrating the collaborative efforts of organizations, individuals, and communities to enhance the lives of people with disabilities.Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below.Contents

Table of Contents

Toggle Episode + Proem + Podcast intro + Off-road wheelchair travel + Introducing Philip Shadle + Travel in Costa Rica + Foundation Business Model + All-Terrain Wheelchair Models + Call to action + Training for Off-Road Travel + Birthing the Foundation + Expanding the Foundation Offerings + Grateful + Contest + Reflection + Podcast Outro Please comment and ask questions:*

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, Twitter, TikTok to @healthhats

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk
Leon van Leeuwen: article-grade transcript editing
Oscar van Leeuwen: video editing
Julia Higgins: Digital marketing therapy
Steve Heatherington: Help Desk and podcast production counseling
Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection, including Moe’s Blues for Proem and Reflection and Bill Evan’s Time Remembered for on-mic clips.

Podcast episodes on YouTube from Podcast.

Inspired by and Grateful to

Ann Boland, Bruce Kimmel, Olivia Zivney, Linda DeRosa, and all my many helpers

Links and references

Camino de Santiago pilgrimages,

Costa Rica

Aimee Copeland Foundation

Action Track Chair in different sizes.

EpisodeProemAccording to the CDC

A disability is any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions).

Clearly, it’s not a legal definition. I would add self-image, societal perceptions, and environment as components of that definition. Some days, I feel more disabled than other days, and some situations enhance or reduce my abilities. Ability/Disability is a continuum that changes over time and situation. Travel accentuates my abilities – puts them in high relief – for me. Travel requires close examination of my abilities so I can figure out how to manage minute-to-minute – constant decision-making. Travel allows me to stretch my capabilities. It’s exhilarating and eventually exhausting. Periodically, I share my travel experiences. Remember the two Camino de Santiago pilgrimages, one in 2019 and the other 2022? In 2023 we explored Costa Rica. We’re planning a music trip to Cuba in four months. Today, I describe our trip to Cloudland Canyon State Park in northwest Georgia.

After a zip-lining accident in 2012, when she was 24, Aimee Copeland was hospitalized and diagnosed with a flesh-eating, bacterial infection. They had to amputate both of her hands, right foot, and entire left leg. Before the infection, she was extremely active, rock climbing, backpacking, and trail running. In response to her frustration with wheelchair life, she created the Aimee Copeland Foundation, which raises funds to create opportunities for connecting with the self, the community, and the earth through the provision of a fleet of all-terrain wheelchairs for free use by people with disabilities within select Georgia state parks. In this podcast episode, we interview Philip Shadle, CEO of the Aimee Copeland Foundation. You can find videos of me motoring in an all-terrain wheelchair on my YouTube channel—links in the show notes.

Off-road wheelchair travelHealth Hats: Philip, thank you for taking a few minutes to tell me about yourself and the Aimee Copeland Foundation. I am a person with disabilities. I’ve got all my limbs and use two-forearm crutches and an electric wheelchair. I can walk. My balance pretty much sucks. I like to travel. My wife and I have friends we travel with. When one of our fellow travelers looked up disability travel, they found the Aimee Copeland Foundation. We went to the Cloudland Canyon State Park and used their all-terrain wheelchair. It was awesome, just awesome. I have a foldable electric wheelchair that does maybe a 12% grade and, at top speed, might go four miles an hour. And I do some pretty rough stuff with it, but I can tip over.

Anyway, I just want to tell you the thrill I experienced with the all-terrain wheelchair. The process was easy: take the online safety training, get a certification, and reserve the all-terrain wheelchair. Everybody was so lovely in the park, and I did two miles in two hours, which was enough. I’m glad I was strapped in.

Philip Shadle: Yes, you must get used to the chair’s operation. The ride can be a little bit rough for first-time users. Like anything, the more experienced, the better you get at handling the trails.

Health Hats: I’m comfortable on trails because I’ve done it with my chair, and I’m very comfortable with a joystick. I had scouts to help me., I went to the website and looked at Ms. Copeland’s biography and story, and it’s awe-inspiring. Tell us a little bit about yourself.

Introducing Philip ShadlePhilip Shadle: I became a dealer for Action Track Chair in 2011. When I started, I realized this is something unique, allowing people who might not otherwise have an avenue to get outside and do things to get off the boardwalks and the pavement and get in touch with the earth. As a dealer, I saw how they helped people physically and mentally be outdoors and go places other people go. Just to be included, one of the things that stuck out in my mind in the early years was when I sold a track chair to the parents of a little boy who was 11 at the time. The most significant thing he wanted to do was play in the creek with the other kids, and he wanted to know if the track chair could go in the water. And I said, it absolutely can go in that water. It was only maybe six inches in a little creek. So, on the first day, I brought a demo chair down to him. He put it in the creek with the other kids, which changed his life. There was no other way, no other wheelchair. He could go down the embankment and into the creek with the kids. I realized then it was something special.

Travel in Costa RicaHealth Hats: We found a travel agent in Costa Rica that specializes in people with disabilities and offered the services of a guide. We went for a week. He drove and set up everything. He was the grandfather of disability travel in Costa Rica. What an enjoyable experience, especially since he took me on some capability-stretching experiences. He took me in my chair on a 10th-of-a-mile-long suspension bridge six inches wider than my chair on each side and 20 stories over the canopy, swaying 18 inches when you hit the middle. I’m scared of heights. I was ready to pee my pants the whole time, but once I got over it, it was like, oh man, I did that. I did that. See my travel videos here.

Foundation Business ModelHealth Hats: How do you fund your work? Those chairs, maintenance, and services can’t be cheap.

Philip Shadle: Fortunately, the maintenance is next to nothing. They’re very easy to maintain. There’s not a lot of parts that go bad on the chairs. So, we launched the program a little over two years ago, and we’ve only had to repair some of the attendant controls. A cable that allows an attendant to drive the chair can get pinched in the track, and we must replace them. But other than that, the chairs, the maintenance, and the function is easy. We are 100% funded by donations and grants. We reach out to the public. We asked for corporate grants for individual donations and everything in between to help do that.

Health Hats: Good. I just sent a hundred bucks and subscribed to the blog.

Philip Shadle: Thank you.

Health Hats: Oh, it’s worth it. I would’ve paid to use the all-terrain wheelchair. I couldn’t believe the Park didn’t charge me.

Philip Shadle: In today’s world, everything costs.

All-Terrain Wheelchair ModelsHealth Hats: Did the 11-year-old kid get the same wheelchair I used, or was it smaller because he was a kid?

Philip Shadle: It was smaller. We have different sizes. It was the exact model you sat in, but the one you rode was 24 inches wide between the arms, and his was only 16 inches. The chair his parents got for him was a little too big. But they went with it because of the longevity of the chair. They wanted him to be able to grow and adapt and not grow out of it. So that’s one. And now we have different models that have expanding arms. I’ve retired from Action Track Chair, but they have models that expand. So, it has the same base, but the arms go in and out to accommodate growth.

Health Hats: I saw the new model on Instagram or TikTok. Aimee was in a new pink one, and she was thrilled. It was so much lighter.

Philip Shadle: Yes. They have a new model called The Axis, which is an adjustable model. To use that can go with growth or change the arm widths in and out.

Call to actionI now have one URL for all things Health Hats. https://linktr.ee/healthhats. You can subscribe for free or make a contribution through Patreon. You can access show notes, search the 600-plus episode archive, and link to my social media channels. Your engagement by listening, sharing, liking, and commenting makes quite an impact. Thank you.

Training for Off-Road TravelHealth Hats: My wife’s a hiker. She would hike the Grand Canyon or another National Park with our friends every year, and I’d stay home. Okay, whatever, I can’t do the Grand Canyon. Those days are over for me. Then, when they wanted to go to Spain and hike the Camino de Santiago, I said, forget it. I’m going. We’re figuring this out. I developed a training plan for myself: what do I need to do to be able to do 14 days of travel? What about when I can’t do all those things? How am I going to travel on a train or a bus? It made me up my game in terms of figuring out how to be accessible or how to have access. See my travel videos here. Oh my God, my mental health. I can’t tell you how much it helps my mental health. I can do shit,

Philip Shadle: That’s right, realizing you’re no longer restricted.

Health Hats: Everybody has restrictions. That’s just the way it is. For some, it’s fear, like I would’ve never gone on that bridge. I wouldn’t have walked across it able-bodied, but here it was. This guy set it up. He was there. And I am like, Hey, I’m here. And once I go forward, there’s no going back. Because you can’t back up because there are people behind you, and you had, I had to do it. And, so then that’s, yeah. So, then it’s, oh man, so I’m 71 years old, and I have these disabilities. I’m an old fart, plus I’m gimpy, but still. So anyway, I want to thank you guys.

Birthing the FoundationHealth Hats: What a great business.

Philip Shadle: We would like to think that it’s Aimee’s creation in her mind after her accident and discovering that she was limited to what she could do versus what she used to do. Her first idea was to create a park accessible to all people and put in specialty items. And then the more she thought about that, the more it’s no. We don’t need a specialty park. We want to go where everyone else goes. That’s when she came up with the idea and contacted me in 2019. She had researched and seen the Action Track Chair, and we took one to her. She mapped some trails in a state park and was thrilled, laughing and driving through the creeks. She said we need to put this out there so that people can enjoy the same state parks that the general public enjoys. The idea of an adaptive park got pushed aside because it made no sense. We don’t want to go someplace special. We want to go where everybody else goes.

Expanding the Foundation OfferingsHealth Hats: Are you thinking about other states doing it? Are other states interested?

Philip Shadle: Very many other states are looking to us. Look at our model. They call and advise. We are welcome to help other states, but we focus on Georgia. We’re just doing our phase two that we’re calling, putting nine more chairs out this year. They’re all out except for two. We will have 20 chairs in the Georgia State Park historic sites. We have three additional tiers in national parks in Georgia, including two in Cumberland. If you haven’t been there, that’s a fantastic place.

Health Hats: So, are the new ones smaller and lighter?

Philip Shadle: We have several different models. Some of the same models in the parks have a narrow version, and then there are newer ones. Aimee’s, which you saw, is 30 inches wide. It goes up the ramp into her van. She can drive up there just like she would in her everyday power chair and then transfer her swivel into the driver’s seat.

If you have some of the bigger models like what you enjoyed at Cloudland Canyon, people will haul those usually on a trailer or in the back of the truck if they do. Many of my independent users have a trailer, and the attendant control you saw allows someone to guide the chair and load or unload the all-terrain chair while you’re in your everyday chair next to the trailer. So that’s one way of doing it by yourself.

Health Hats: I like renting an all-terrain chair instead of owning and storing one.

Philip Shadle: This year, we introduced a new program. We purchased a big empty cargo van that can move the track chairs. We’re going to have 20 parks that host the chairs. They’ll live in the park, but if you decide to visit another park, we’re mapping ten new parks that are not hosting a chair, and we will put them online. Maybe you decide you want to have an event, you and your buddies all want to get together, and there are four of you. You’ll give us advanced notice. We’ll go around and pick up four chairs and get them all in one location for you to use for your event. We want people to be able to use the state parks. The state parks are amazing. They have so much to offer; we want people to enjoy it.

GratefulHealth Hats: Thank you. What a gift. You must have a team. Thank them for all the excellent work they do. Here’s one person who appreciated it. I had the time of my life. I’m still buzzing. It was a thrill, a total thrill.

ContestPhilip Shadle: There’s one other thing I could lead with you that you might want to fit in there somehow. On June 1, we’re going to launch a sweepstake, and we are going to be giving away a brand-new action track chair. You get an entry for a donation, and there are different levels of donations and entries, so the sweet takes work. And it’s going to run through September. People will have a reasonable time to see, share, and participate. And then we will give away a brand-new action track share, just a time for our beautiful fall weather to get out and watch the leaves change. Anyone In the 48 contiguous states can apply. So, it’s going to be exciting. They’re going to get to choose the size. It will be the model you rode in, but they choose their size and color, and the manufacturer will custom-build it. We get to deliver it and make somebody very happy.

Health Hats: Alright. Thank you so much, sir.

Philip Shadle: Thank you.

ReflectionI’m still high off my two-hour, two-mile all-terrain wheelchair experience. I did it, I did it, I did it! I had plenty of help: a team – the Aimee Copeland Foundation, Action Track Chair, Georgia State Park rangers, the airlines, and my travel friends and family. Any of us can benefit from warm and sensitive workflow, device, and personal assistance to expand our abilities. It’s humbling and exhilarating. Onward.

I’m grateful to you who have the critical roles as listeners, readers, and watchers. Subscribe and contribute. If you like it, share it. See you around the block.

Related episodes from Health Hats

Costa Rica – Travel with Abilities

Creative Commons Licensing

CC BY-NC-SA

BY: credit must be given to the creator. NC: Only noncommercial uses of the work are permitted.

SA: Adaptations must be shared under the same terms.

Please let me know. danny@health-hats.com. Material on this site created by others is theirs, and use follows their guidelines.

Disclaimer

The post Accessible Off-Road Travel in an All-Terrain Wheelchair first appeared on Danny van Leeuwen Health Hats.

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Aaron Carroll, CEO of Academy Health, discusses his journey to improve health systems & decision making through community engagement & repetitive communication.

Summary

Aaron Carroll, CEO of Academy Health, shares his journey, from his frustrations with the healthcare system as a pediatrician, and the role of mentorship and science communication in his career. He delves into his efforts to make complex health issues understandable to diverse audiences through various media, his role in improving health care decision making and systems, involving communities in research, and building trust through consistent and repetitive science communication. Dr. Carroll also touches on the importance of implementation science and the challenges of making research findings effective in real-world settings.

Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below.

Contents

Table of Contents

Toggle Episode + Proem + Podcast intro + Introducing Aaron Carroll + Health is Fragile + Writing a Prescription Isn’t Enough + Fix it + Phase one: Independent Investigator + Phase Next: Mentor, Communicator, Responder + Academy Health + Communicating Science to the Public Where They Are + The Practice of Communicating for Impact + Engaging Lived Experience + Patients Included at Academy Health + Call to action + Key Points + Lived Experience at the Table – Your Lived Experience + Research Skepticism + Learning When the Hypothesis isn’t Proven + Implementation Science + Efficacy and Effectiveness + Trust and Listening + Repetition, Repetition, Repetition + Reflection + Podcast Outro Please comment and ask questions:*

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, Twitter, TikTok to @healthhats

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk
Leon van Leeuwen: article-grade transcript editing
Oscar van Leeuwen: video editing
Julia Higgins: Digital marketing therapy
Steve Heatherington: Help Desk and podcast production counseling
Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection, including Moe’s Blues for Proem and Reflection and Bill Evan’s Time Remembered for on-mic clips.

Podcast episodes on YouTube from Podcast.

Inspired by and Grateful to

Seth Godin, Nakela Cook, Ann Boland, Ellen Schultz, Steve Heatherington

Links and references

Aaron Carrol: The Incidental Economist, Healthcare Triage, Robert Wood Johnson Clinical Scholar, New York Times, Indiana University’s COVID response.

Academy Health: Academyhealth.org/Datapalooza, Communicating for Impact, community-led research grants, Health Data Leadership Institute, Dissemination Implementation Science Conference

patient-included criteria

implementation science

EpisodeProemDanny and Ann, July 3, 2024

Together for more than fifty years, my wife and I still practice communication – practice as in repetition, experimentation, and humility with two steps forward and one step back (or one forward and two back). No wonder anyone participating in healthcare continually struggles with the puzzle of communication. Just today, I texted a pharmacy about access to a critical medication with an expired prescription, tried to explain my newly diagnosed diabetes and diet choices on FaceTime with a friend, and drafted a letter about lessons learned about measurement for team members to share with our leaders. I know some master communicators: Seth Godin, Nakela Cook, my wife, Ellen Schultz, Steve Heatherington, and my guest today, Dr. Aaron Carroll, President and CEO of Academy Health. They each excel in different ways under different circumstances. I must take care to keep listening to their content and not float above and marvel at their artistry and skill.

DALL·E 2024-07-24 09.19.39 – A scene depicting various master communicators, each in their element. One is a charismatic speaker on a stage, engaging an audience

I’m delighted to have the opportunity to spend some time with Aaron Carroll and tap into the communication challenges he faces as a communicator and leader. I’ve followed him for years on his blog, The Incidental Economist, and YouTube channel, Healthcare Triage. Dr. Carroll can, has, and will impact your health.

Introducing Aaron CarrollHealth Hats: Aaron, thanks for joining me. I appreciate it. I’ve been following you for a long time.

Aaron Carroll: Sure. That’s great.

Health Hats: I love your work. You’re inspiring and make complex issues understandable and entertaining. I know how challenging that is. I’m trying to connect with younger audiences since I’m an old fart and on the way out. People in advocacy and activism are younger. They don’t hang out where I hang out. I’m experimenting with hanging out in different places. That means shorter, more complicated segments, especially since I’ve added video. Although I’m mostly a one-person shop, I have people who help me, but it’s still tough. My grandkids, 16 and 13, help and advise me. It’s humbling. Anyway, I admire what you’ve done, and I’ve been following you for a long time. I’m a little nervous that you will communicate less in your new job as CEO of Academy Health.

Aaron Carroll: You’re very kind. I appreciate it.

Health is FragileHealth Hats: When did you first realize health was fragile?

Aaron Carroll: My dad was a trauma surgeon on top of his other jobs. He was also a thoracic and general surgeon. From a young age, I knew terrible things could happen to people. Even with the sort of medicine being as advanced as it was, things could go wrong. I heard him talk about patients, what happened to them, and how hard it would sometimes be to improve their health, which certainly hit me.

And then there’s a fair amount of chronic disease in my family as well. Recognizing that even people who appeared healthy and you might not know were suffering from some chronic condition. It happens all the time. So many Americans have chronic conditions or things that go wrong with them. It happened to me, my siblings, my parents, and others. It became more apparent as I got older and went to medical school.

Writing a Prescription Isn’t EnoughHealth Hats: Why don’t you tell us about yourself and your journey from Indiana University to the Academy?

Aaron Carroll: I was raised in a medically focused family, and from a young age, I always thought I wanted to be a physician. And so, even if you asked me about grade school, but indeed high school and into college, I wanted to go to medical school. I got to medical school, and everything was fine. I became a pediatrician and went off to residency. I was very frustrated and so severely that I thought about leaving the profession. I thought I’d finish residency, but I was in Seattle. I’m going to work for Microsoft or something like that. I was mainly frustrated at the healthcare system and how hard it was to get my patients what they needed. I’d spent four years training on how to take care of all kinds of stuff, but you can write a prescription. If the family doesn’t have good health insurance, they can’t afford to fill it. Even if they have health insurance, perhaps they need help to afford the deductible or the copay. Maybe they need a car to get to the pharmacy. I could talk about everything a child needed. They often needed their parents to have a job, food security, or somewhere stable. It was incredibly frustrating.

Fix itLuckily, a couple of mentors told me I could make a career out of trying to fix the healthcare system. Sign me up for that. It sounds great. So, I stuck around Seattle for a couple extra years and became a Robert Wood Johnson Clinical Scholar. I got a master’s in health services from the University of Washington School of Public Health. I graduated and attended Indiana University (IU) as a newly minted health services researcher.

Phase one: Independent InvestigatorI think of my career at IU as having about four stages. Uh, in stage one, I was a very traditional independent investigator. I did a lot of work in clinical decision support. How can we take data and evidence over here and give it to clinicians at the point of care where they need it so they can practice more evidence-based and guideline-based medicine? I did much work in medical decision-making and utility assessment to determine the most cost-effective or helpful way to practice through patients’ eyes. How do we bring data and evidence to patients, policy, and healthcare? I also did some policy work. How do we figure out how the Affordable Care Act will work?

Phase Next: Mentor, Communicator, ResponderThen, in phase two, I became interested in mentorship. I realized there’s only so much work you can do yourself. Things require teams. I convinced my chair and the whole school to develop programs to better mentor researchers in their careers. How do we take data and evidence and bring it to the practice of research so that we can do a better job in training?

But then I realized in phase three, we need to be talking to the public. It’s not enough for us to keep talking to each other. I got really into science communication. I started a blog (The Incidental Economist) in the late 2000s. It was the golden age of blogging. Everybody seemed to have a blog, and ours focused on how we bring data and evidence to healthcare reform discussions. It was when the Affordable Care Act was being debated and finally passed. That grew an audience. Eventually, I started consistently writing for mainstream media, for the New York Times, for seven or eight years. I started a YouTube show (Healthcare Triage), which is all about how we take data and evidence and bring it to the public for better discussions about health, health research, health policy, and healthcare.

After phase four, the pandemic hit, I got pulled into helping run Indiana University’s covid response. Indiana University has 110,000 or so people. It was like running a medium-sized town. We built labs. We set up public health infrastructure. We did contact tracing and isolation all around. How do we bring data and evidence to sort public health into answering this major problem?

That later transitioned into my becoming Chief Health Officer for Indiana University. We focused on mental health and several other initiatives.

Academy HealthI’d always been an Academy Health member and had known the previous President, Lisa Simpson, my entire career. I’d always considered her a mentor, and I knew that when she was stepping away. This was a real opportunity. Academy Health is all about bringing data and evidence and improving health and healthcare for all. That’s our mission. Suppose you follow the threads of all the phases of my career. In that case, they are all about how we take data and evidence and bring it to clinicians, patients, researchers, the public, legislators, policymakers, and public health to do a better job for health and healthcare.

And so, I said there would only be one or two jobs that could be a dream job. I’d love to do that someday. When this opportunity came, it was too good to pass up because our mission is to take data and evidence and bring it to improve healthcare for all.

Communicating Science to the Public Where They AreHealth Hats: Quite a story. I’m glad you’re at Academy Health. I’m also a patient and caregiver stakeholder on the Board of Governors of PCORI. Academy Health and PCORI’s work melds together. Targeting the non-medical population is so important., The PCORI Board spoke last week about how medical practice changes. It isn’t just changing practice. You could successfully change practice and still not impact what’s happening in people’s lives. I suggested that we ought to say changing practice and life.

You’ve experimented with different tools, methods, and channels—communication to the non-medical community. So, what have you learned that you’re bringing with you into your Academy Health gig?

Created by Allison Saeng on UnsplashAaron Carroll: You need to do a lot of things. Too many people think science communication is about finding that perfect soundbite, that tweet, or that TikTok that’s suddenly going to change the world, and that is not how it works. Good science communication is retail, detailed, and requires repetition. It requires the

Image by Vitaly Gariev on Unsplash

building of trust. People understand where you’re coming from, why you’re saying what you’re saying, and an explanation of how it gets done. There must be two ways for people to ask questions, have them answered, and feel heard. Too much is uni-directional: just let me broadcast it to you. It also requires a bunch of different media. The same people who might read a column in the New York Times are not the same people who might read my blog, nor are they the same people who would listen to our podcast; they are not the same people who might watch our YouTube videos. Often, the content is similar, but how we give it, how much time it takes, and which of your senses you’re using differ. It’s essential to meet people where they live and where they are getting their information. Do not believe that there’s just one solution that works for everybody. It’s also essential to ask questions and listen. We regularly survey our community on their professional and personal needs, how they communicate, and how we might be better reach them. We work hard to train our members to do this better.

| Figure 4: Image by Alex Shuper on Unsplash |

The Practice of Communicating for ImpactImage by Alex Shuper on Unsplash

Our flagship online course, Communicating for Impact, is designed to address this need and covers the foundational aspects of strategic communication- Knowing your audience and crafting effective messages. Choosing the proper channels to deliver those messages is much of what I was talking about. We’ve also recently piloted another online course to address misinformation and how researchers can use communication strategies to build trust with key audiences. It is not enough to wait till something terrible happens and then post a counter. It doesn’t work. Sometimes, it doesn’t work to bring attention. Still, if you can build that crucial trust over time, you can prebut not rebut, but prebut by getting people to think better about how they take in information, to question its truthfulness and how much they should trust where they’re hearing it, and what they’re hearing. But again, that takes time and effort.

I don’t want to say it’s easy; I’ve spent 15 or 16 years with this being one of my true passions. As you practice it and do more, you get better at it. No one is born with those skills. That’s one of the things people also mistake: they think you’re born a good writer, or you’re born able to do video, or you’re born able to do podcasts. It takes time. It takes practice, just like anything.

Health Hats: I’m like you. I know there are readers, listeners, watchers, and long-form people: there’s the one-minute person, the six-minute person. My grandsons are good written word and video editors. I talk with them about the one-minute shorts on TikTok and Instagram. They’ll tell me I’m burying the lead. Don’t worry so much about the end because nobody will get to it.

Aaron Carroll: There’s wisdom in that. Even when you’re writing columns, I learned to watch my editor, every single time, take the bottom paragraph and move it to the top because we instinctively think, oh, you want it upfront.

Engaging Lived ExperienceImage from https://www.pcori.org/engagement/engagement-resources/engagement-research-pcoris-foundational-expectations-partnerships

Health Hats: I wanted to talk to you about having people with lived experience from beginning to end. The nuts and bolts are challenging because people have varied skills, interests, styles, and time. We were talking about it at PCORI. We have a Methodology Committee., It bothers me that no people with lived experience are on the Methodology Committee. I had lunch with the new chair of the Committee. We talked about looking for a person who started with lived experience with chronic illness and then learned skills about statistics and research. Then, we could have a scientist who became a born-again patient. So, the lived experience came from two different directions.

Aaron Carroll: Yeah.

Patients Included at Academy HealthHealth Hats: Academy Health has done much over the last few years by working with people’s lived experiences. So, what are your aspirations for this new role?

Aaron Carroll: Well, partnering with communities and those with lived experience is a priority for Academy Health. Much of what we’re trying to do is make research better. And we all know that those kinds of partnerships improve research. For instance, an Academy Health team supports ten community-led research grants. These go beyond just community engagement to community leadership. The research projects elevate community voices. And make the priorities of communities the primary goal of local health system transformation efforts. The funded studies address local healthcare, individuals, or systems. They address local healthcare system issues and importance to communities of color—people with disabilities, LGBTQ-positive individuals, and other historically marginalized populations. We proudly hold patient-included events such as the upcoming Health Datapalooza. I’m pretty sure you were a scholar at that last year. I’m sure you have a lot to contribute and talk about. That conference has met patient-included criteria since we began hosting it in 2016. We want patients involved in the design and the planning to speak and attend. We offer financial support for travel and accommodation as much as possible. We accommodate disabilities as well. It’s critical—we push the envelope there. I’ve been pleased to see that AHRQ and even the NIH are much more focused on patient-included research, not just in one phase, but trying to get people with lived experience who can contribute necessary components through research from its conception to its design to how we’re going to publish it and disseminate. It’s crucial if for no other reason it’s about building trust. It’s about creating that community so that when we finally get results and want to go out and implement them, we get the buy-in that people feel heard, trust the healthcare system or other parts of the system, and hear them.

Call to actionI now have one URL for all things Health Hats. https://linktr.ee/healthhats. You can subscribe for free or contribute through Patreon. You can access show notes, search the 600 plus episode archive, and link to my social media channels. Your engagement by listening, sharing, liking, and commenting makes quite an impact. Thank you.

Key PointsHealth Hats: So, what do you want this audience to know about you, Academy Health, or your upcoming conferences?

Lived Experience at the Table – Your Lived ExperienceAaron Carroll: We want people to be involved. We’re not just an organization of MDs and PhDs. We are an organization dedicated to using data and evidence to prove health and healthcare for all that. It necessitates having people with lived experience at the table. We’d love for people to attend our meetings. As I said before, Health Datapalooza is probably the one that focuses most on that. It’ll be in September. Registration just opened. It’s at Academyhealth.org/Datapalooza. I’m sure you can find the link attached here. Please become involved in the organization, attend the meetings, and participate.

We want those voices. A month or two ago, I was at our Health Data Leadership Institute, and there were patients and those with lived experience who sat on the panels and taught others how to do this critical work. We want to be inclusive. We are not just looking for academics. Something like just under half of our membership comes from academics.

Health Hats: That is dramatic.

Aaron Carroll: We have people come from government; people come from us, and our members come from, you know, non-profits. And for-profit corporations, they work at think tanks. Some are people like you who have lived experience and have something to contribute to that evidence base and put it into use.

Research SkepticismHealth Hats: I am a big shot at PCORI, so I’m eyeball-deep in research, not as a researcher, but I’m quite the research skeptic because I feel like I’m more than aware of what it’s not. You did a series on the research industry, which I found fascinating. One of the things that’s interesting to me about research is that I feel like implementation is local.

If you research appendectomies and antibiotics versus surgery, that’s one kind of research. But the stuff about the system and community is different. The key seems to be that somebody cares enough to dog it where they live. I’m not sure what the generalization is. How do you allocate dollars for local because that’s where the experimentation and some good ideas happen?

Learning When the Hypothesis isn’t ProvenHealth Hats: Then there’s stuff that doesn’t work or get published. But if anyone is like me, I learn way more when what I tried didn’t work than when it did. I was an editor of the Journal for Healthcare Quality and on the editorial review board for about 15 years, and we tried our darnedest to get people to publish about stuff that didn’t work. We got maybe five submissions in 15 years. It was maddening.

Aaron Carroll: It is so hard, and one of the problems with how we do research is we want positive results, and all the incentives are aligned to try to make that happen. And so, people wind up, even if it’s not consciously, driving the way that they create the study, the way they design it, the way they do the analysis and the way that they talk about it, all to make everything—looking more positive leads to results that sometimes aren’t reproducible and take us down blind alleys that don’t work. It also means that we don’t learn like we should because, as you correctly noted, we learn just as much from our failures and mistakes as we do from our successes. It’s also a problem that when you do a study, it’s just a perfect, idealized, unrealistic environment.

Implementation ScienceAaron Carroll: Just because something worked in that environment doesn’t mean it will work the same in the real world. There’s a vast new branch of science called implementation science, which looks at how we accurately take this over here in research and then make it work in the real world, which is much more complicated than people think. At the end of the year, we have another conference called our Dissemination Implementation Science Conference, which focuses on that. How do we get the results out to the world so that people know about them, and then how do we correctly implement them in ways that will work?

Efficacy and EffectivenessAaron Carroll: We always talk about two words we throw around in science. There’s efficacy and effectiveness. Efficacy is how it works in a perfect situation. So, when the FDA approves a drug, it’s often efficacious. We know it can work in a perfect environment where you will get benefits and the harm is minimal. But if it’s too expensive, if people can’t get it, if there are shortages, or if people don’t know about it, then it’s not practical. It doesn’t work in the real world. Too often, we focus on one, ignore the other, and do so to our detriment because effectiveness is the real world. We must get much better at making those. But again, that’s all about trust, making sure people feel heard, communicating, and getting the results out there. We will then work to ensure that as they are implemented, we get the same results we think we should get based on studies in a non-real world.

Trust and ListeningHealth Hats: The only thing I would challenge you about is making people feel heard. I think it’s listening. I don’t feel heard. I think we listen.

Aaron Carroll: Absolutely. Well, I say make them feel heard because listening is necessary but requires communicating back, so it’s not just my hearing you; it’s also ensuring I repeat it. So, it’s a two-way street, but I agree that listening is critical. It’s also engaging in communication.

Health Hats: I was at an event. I was talking to somebody and listening, but they stopped and said, “Is that the podcaster in you?” And I said, no, I’m just listening. This is listening to me. They were suspicious of me because I didn’t interrupt them with all my thoughts. It was more I was asking clarifying questions or saying, I think what I’m hearing is this. I was taken aback. To have this little strain of suspicion when I was actively listening. What are you going to do?

Repetition, Repetition, RepetitionAaron Carroll: It’s funny because, when I think about our pandemic response at IU, people will talk about the labs or the tests or what we built, but I still maintain that one of the most important, successful things we did was webinars, not just every week, but sometimes multiple times a week. I’d answer the same questions repeatedly, and people would say, don’t you get frustrated? But that’s the work; it’s reiterating it back and back and back until people know that I’ve heard, and I’ve answered, and I will answer again. I will explain why, not just in one word, but try to explain it. It takes effort and time, and it can be grinding work. Please don’t take that the wrong way or that I’m upset about it. There is no quick fix; it takes repeatedly listening, processing, and talking to each other.

Health Hats: In my quality management professional days, being a group leader, often they would say, that was my idea. And I would respond, yeah, and this is a success. Somebody is selling this as their idea.

Aaron Carroll: Yep.

Health Hats: Congratulations, you did your job. This is not the kind of credit we need. Thank you very much for this. If there’s anything I can do for you, let me know.

Aaron Carroll: I appreciate that. Just stay in touch with us.

ReflectionWe make many health decisions every day, both consciously and unconsciously. Some are as simple as scheduling an appointment or avoiding certain foods. However, most of our health behaviors are driven by habit and inertia. During the early stages of the COVID-19 pandemic, I led a group exploring people’s questions about the virus. We discovered that much of what people wanted to know wasn’t being addressed by funded research. As a member of the Board of Governors for the Patient-Centered Outcomes Research Institute (PCORI), I’ve observed that the scope of patient-useful research is limited, and the implementation of results is inconsistent. These are my personal views and don’t represent PCORI’s official stance. PCORI focuses on Comparative Effectiveness Research (CER), which compares different medical treatments or practices to help patients and stakeholders make informed decisions. My experience has shown me that there’s room for improvement in making research more relevant and accessible to everyday people. My role on the Board allows me to identify small but impactful ways to influence the research industry. I’m particularly interested in research methodologies that can effectively study patient and caregiver experiences, functioning, and decision-making processes. Check the show notes for a link to an AI generated compilation of some of these methodologies.

These methodologies need to be validated and widely accepted within the research community. Organizations like Academy Health and PCORI are natural partners in this endeavor. I greatly value the work of Aaron Carroll and his team, and I appreciate the opportunity to learn from their expertise.

I’m grateful to you who have the critical roles as listeners, readers, and watchers. Subscribe and contribute. If you like it, share it. See you around the block.

Related episodes from Health Hats

Camden Coalition. The Jury’s In. Long-term Partnerships Rule

Building Capacity. Building Power. Citizen Power.

Walk the Talk. Person-First and Co-Production.

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The post Communication Ninjas: Practice, Trust, Evidence first appeared on Danny van Leeuwen Health Hats.

View Details

Family and friends dispersed Might Casey (Mary) Quinlan’s ashes in the Gulfstream, reflecting on her life and sharing outrageous and mundane pics and stories.

Summary

On May 24, 2024, Mighty Casey Quinlan’s ashes were spread in the Gulfstream of the Atlantic Ocean near Stuart, Florida. This episode captures the layers of that experience, featuring an introduction conversation between Jan Oldenburg and Health Hats, recorded on June 27. The episode includes self-introductions of the dispersal party, a historical photo tour of Casey’s life, and a reflection form Hank Burchard. The package of audiovisual pieces including a 17-minute video with introductions and a three-minute photo tour by Casey’s sister, CeCe can be found in the show notes. Casey’s website, mightycasey.com, will include all her podcasts and the contents of six VHS and one Beta tape recorded over the years. Check our progress.

These show notes DO NOT include images.

Images are key to this episode. Click here to view the printable newsletter with images.

Contents

Table of Contents

Toggle Episode + Proem + Podcast intro + There’s Something Happening Here + How I Met Casey + Call to action + Photo Tour with Historian, CeCe Casey + Jan and Danny sign off + Reflection from Hank + Podcast Outro + Creative Commons Licensing Please comment and ask questions:*

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, Twitter, TikTok to @healthhats

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk
Leon van Leeuwen: article-grade transcript editing
Oscar van Leeuwen: video editing
Julia Higgins: Digit marketing therapy
Steve Heatherington: Help Desk and podcast production counseling
Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection, including Moe’s Blues for Proem and Reflection and Bill Evan’s Time Remembered for on-mic clips.

Podcast episodes on YouTube from Podcast.

Inspired by and Grateful to

Jan Oldenburg, CeCe Casey, Michael Casey, Myrna Isaacs, Piper Dankworth,

Laurie Rodgers Stukel, Hank Burchard, Dave DeBronkhart, Amy Price

Links and references

Casey’s Website

Health Hats Podcasts with and about Casey

EpisodeProemHealth Hats: On May 24th, 2024, we spread Casey’s ashes in the Gulfstream of the Atlantic Ocean near Stuart, Florida. This episode layers several of the many pieces of that experience. I stopped here because I’d had enough. Time to publish! You’ll find an intro conversation between Jan Oldenburg and me recorded on June 27th, followed by self-introductions of the dispersal party, recorded by our guide, Karen Hallett. Next, we’ll take a historical photo tour of Casey’s life, piloted by Casey’s sister, CeCe. I only included about fifteen of the almost one hundred photos, as the resulting three-minute clip took almost twenty hours to produce. We’ll end with me reading Hank Burchard’s post-event reflection, and then Jan and I will wrap it up. The written and audio include everything except the videos, of course. I will create a 17-minute video with the introductions and a three-minute one with the photo tour. I’m resurrecting Casey’s website to include all her podcasts and the contents of six VHS and one Beta tape Casey recorded over the years. The URL will be Casey’s https://mightycasey.com. Try it to see if we’ve got it ready.

There’s Something Happening HereHealth Hats: Why don’t you tell us a little about how this memorial event for Casey took place? What was the genesis of it besides her dying?

Jan Oldenburg: Yes. One of the things that Casey had specified in her will was that she wanted to be cremated and she wanted her ashes spread half in the Humboldt current, up the coast of California near Coronado, where she grew up. Half in the Gulf Street, which is not on the Gulf side of Florida, as you may have thought, as I thought originally, it’s on the Atlantic side. And she specified that a portion of her life insurance be dedicated to this event under the auspices of her sister, short of a blood test, Piper. So, Piper with a few family members organized the first boat journey last fall off of the coast Coronado. And they thought through and designed a service. And then they orchestrated the second half, this spring at the end of May, in Florida. And Danny, that’s the event that you and I joined for. And it was a mix of family members, people who loved Casey from several of her many incarnations and focus points and I think it was the first time all of us got together, but it was Casey’s wishes. And I learned afterwards that part of the reason for specifying these two locations is that eventually the Humboldt current and the Gulf Stream join up and circumnavigate the Globe including I believe, passing past London and the UK.

Health Hats: I participated obviously with you and in the preparation of it that there were several fits and starts, in terms of the logistics now. So can you just tell us briefly about the arranging those logistics.

Jan Oldenburg: There were a number of a lot of moving parts to coordinate. One was the location and a boat of sufficient size, but there was a trade-off between the date, the boat, the size, and how many people could come. And Casey’s family. New and connected with family members and people they were aware of, but they didn’t know all the people from the healthcare side of Casey’s life. So, they asked me to help coordinate that side of it. I pulled in. A couple of people that I knew Casey loved from the Richmond area. That was Myra Isaacs my partner in helping to manage all things Casey in hospice and Casey estate. Hank Burchard who was a longtime friend from West Virginia, and then I worked with several people. Dave DeBronkhart you, Danny, others, to circulate the word, get as much of the word out to people as we could. But by the time we were at that stage of the organization, it was only three, maybe four weeks before the date. And the date was at the beginning of Memorial Day weekend and so people had plans already. And so there were also fits and starts about who could come when they’d come. And then the boat that we were initially going to go out on ended up in dry dock. So, then they had to scramble for an alternate boat. And that changed the date as well as the rain dates and that further churned for some people in terms of their arrangements. It’s a combination of lots of people trying to organize something, lots of moving parts in terms of all the pieces and lots of people coming from various points in the country.

How I Met CaseyJan Oldenburg: I’m Jan Oldenburg. I met Casey, and I think we figured out it was 2012. Wow. We knew each other before that through Twitter, but we met in the flesh in San Francisco at Stanford MedX. And kept in closer touch after that. But it was when I moved to Richmond in 2017 Casey took me under her wing to introduce me to everything in Richmond, which deepened and broadened our friendship.

ePatient Dave: I’m Dave DeBronkhart, known on the internet as e-patient Dave, the patient empowerment guy. I was a cancer survivor in 2007, and then in 2009, I found myself on the front page of the newspaper because I had looked into my medical record and discovered a whole bunch of garbage in there. It turned out it was a significant policy problem in Washington. One night, there was a reception in Washington at Political Innovations, and this loud red-haired woman walked in talking about charisma. I’m going to give you a big wet smack on the kisser. Because she had just gone through her first cancer adventure, and she had an opinion that what I was advocating for was a good thing. She was not going to, the fact that none of us had ever heard of any such thing.

Piper Dankworth: Casey knew me before I knew her because she was older, and we’d known each other since I was born. So, she is the older sister I never had; as she used to say, you are a sister short of a blood test. I grew up with her and CeCe, and we shared love of horses, love of the sea, love of martinis, love of Buffet, and she’s just been a dear friend of mine for sixty-six years. Wow. Nice.

How did you know Mary Casey?

CeCe Casey: I’m the second of the Casey kids. Mary, yes. I can call you Mary. It was first me and then Mike.

Michael Casey: She used to refer to me as Rotten Baby Brother.

CeCe Casey: I learned a lot from Mary. Mainly not to call her Mary in front of other people. She didn’t like her that much, but M Casey Quinlan took me on a tour down to Nashville and Memphis for my birthday. And the way she drove, we made it in record time. I was used to how she drove because I grew up having her drive me to my eye doctor appointments. She went from Chula Vista to Coronado, so I knew exactly how fast we were. I dealt with her a lot down where she went. I met a lot of interesting people. Some of them probably asked how that girl ended up being Casey’s sister. Because I’m not exactly exuberant. When we found out that she had cancer, she would just go deep into reading, researching, and talking to people. She has collected so much knowledge that no one has before, and I’m proud to be her sister.

Myra Isaacs: I met Casey around 2008. She was on the Board of Directors of Virginia Supportive Housing. When I was a staff member, we were assigned to work on projects together, and we just hit it off. We have been friends ever since. We had adventures together. It was fun.

And I met Jan. I still can’t remember exactly where, but like once, probably five years ago, and didn’t stay in touch. That’s right. Anyway. And then, because we got so involved in just seeing that things weren’t together and needed to be, I went to Casey one day and said, what do you want me? Do you want to step up? She said, you pretty much did the same thing. And she asked us to try to help as best we could. My pleasure. Unfortunately, my husband had just passed away the year before, so I had expertise that I didn’t want, and I had, and I felt like the best thing I could do was pass that along. And it did help because we were going on the journey with hospice, and I also have a background in healthcare

Danny van Leeuwen: I’m Danny van Leeuwen, known as Health Hats. I have no idea how I met Casey. I can’t remember. I would say we were partners in crime because she was a revolutionary, and I’m not so much. I’m more of a figure-out how everything works and tinker with the system to our benefit. We helped each other from different points of view. It was helpful. Yeah, I think we had. Then she started her podcast, and I was podcasting. I advertised on her podcast, and then she started failing and was having trouble getting her podcast out. We would get together and have a recorded conversation. Then I would edit it for me to use, and then I would edit it for her to use her intro and outro, so they were different but the same. We did that, I don’t know, three or four times. Four. Four, okay. We did those four times over the years. And that was a hoot and an essential relationship for me.

Hank Burchard: Hank, Casey, and I go back to the late 20th century, a whole other millennium. She and I met through an affinity group for the Patrick O’Brian sea novels. And my function in her life was to be her hunting guide. We hunted him on my property in Maine and wherever else the law allowed. My role was restaurant guide in Richmond. She and I visited all the good restaurants in Richmond and made a good start before things went wrong.

And but you turned her into quite a hunter. She had a musket loader gun. She was a born hunter. All she needed was somebody to hand her a gun, and she picked it up extremely fast. And because she’s a woman, she wasn’t playing macho.

CeCe Casey: She ended up with a bear rug.

Myra Isaacs: I named him Fred. Fred freaked me out every time I walked into her room, so I was happy to have to say to Fred I might have a friend

Laurie Rogers Stukel: I am Mary Quinlan Casey’s or Mary Casey Quinlan’s youngest cousin on the Rogers side of the family. And I guess I’ve known her all my life; she was the oldest cousin and somebody I have always admired or admired so much for what I saw her do on stage. And I went to New York City when I graduated high school.

I went to school and met her at NBC, and she showed me around and always was somebody I looked up to. We didn’t grow up together other than all the beautiful times we had as cousins. We have 13 amazing cousins with whom we have spent a lot of time. But she was always the oldest and somebody I always looked up to.

Then, in 2010, I got breast cancer, and I didn’t. I did know that Mary had breast cancer, but it was unique because we didn’t have it in our family at all, which doesn’t matter anymore. But we had that in common, and she provided me with so much information and inspired me so much, and I’m very thankful for her. And I miss her. She saw me here in Florida, and I was just overjoyed that she had come and spent some time here. Very happy to meet you all. We’re close friends.

Amy Price: I’m Amy Price, and a lot of us here. I don’t know exactly when I met Casey because Casey kept coming in and out of my life. We both had a bit of a revolutionary bent and that resilience. And what I admired is that with that strength, she had such a gentle compassion for people who weren’t strong like that or that, who couldn’t speak for themselves. She had a lot of tolerance, and she was kind. I just loved her. She was an awesome writer. So sometimes we would go back and forth, like writing things. At BMJ, the most fun I had with her, I think, was when we were in London, and we were filming a movie, like a class on co-producing research with patients.

Michael Casey: Sounds riveting.

Amy Price: Yeah, it was fun. We just went over it and ate the whole time, which was also excellent.

Michael Casey: She always had a nose for the best restaurants; you can find them anywhere. Come to San Diego. Take me to great restaurants. I’d never heard of it.

Amy Price: She could make art from anything, whether it was speaking, movie, writing, actual digital QR code on her chest, that QR code on her chest. And what kind of statement is that? And that statement lives on. I think several organizations are translating that.

Jan Oldenburg: The QR codes are becoming an HL7, a health level seven standard. It’s becoming a standard. The QR code is this big on your chest. Not, it’s not being quite literally translated in that way.

Michael Casey: All right. QR code. Really? Yeah. So, let’s think about QR codes for a minute now. Anyway, yeah. I’m trying to avoid this, but so yeah. How long have I known Casey? Since my birth, blah, blah, blah. But she was always going back to what Laurie would say in my life; she was always like this occasional special guest star when I was a kid. Because she would be in college or she’d be in New York, and then bam, she’s there. And everything’s different when she’s there. Yeah. And I had this kind of hero worship thing for her for most of my childhood because she was just so resolute, and when she wanted something from God, she went out and got it. I don’t know. She made a big impression on me that way and had a sense of humor that just wouldn’t die, and it came in useful many times. I went through some rough stuff in the nineties with my younger two kids or my older two kids. And she was by my side through this whole thing, not physically all the time, but she was constantly checking in with me. And how are things going? And then, when she had cancer later, I did try to do the same for her, but I know that it was more natural for her than it was for me. And she just was, like you say, compassionate and caring about the people around her, and she wanted them to do better and have a better life.

I can’t believe it took her as long as it did to figure out this angle on healthcare that she had. But she wrote a book, as you all know, Cancer for Christmas. And that’s right. That’s her, like her, so on brand for her. To turn a life-threatening medical situation into a gag life, you know, ‘s a lot of courage. That’s a lot of courage. And I keep saying she’s been going up a little while now. I keep coming across things where I want to find out her opinion. I can’t; she has always been the coolest. No. But she was always the coolest of the three of us. She knew more about music and culture than anybody I knew. When I was in second grade, she gave me a copy of the album Cream on my birthday, which, if you think about second graders, you might say advanced.

Maybe he’ll like it, but I listened to it and became a Cream fan. It was crazy. And then she got the first Harry Potter book and sent it to my oldest when Scholastic was still publishing it, and there were like 20,000 copies of it in the world or whatever. And she just said this is going to be great. This is a great story. And she was right. She didn’t know how she used it, but they would get it. But that’s the kind of cool hunting that she would do. And so when I come across stuff, I’m like, no. What does she think of this? I miss not having her here to be able to ask her.

Call to actionI now have one URL for all things Health Hats. https://linktr.ee/healthhats. You can subscribe for free or contribute to Patreon. You can access show notes, search the 600-plus episode archive, and link to my social media channels. Your engagement by listening, sharing, liking, and commenting makes quite an impact. Thank you.

Photo Tour with Historian, CeCe CaseyCasey’s sister, CeCe, took us on a historical photo tour of Mary Martha Casey’s life. I’ve selected several photos to share in the video and written version of this documentary, which can be accessed here https://health-hats.com/pod221. The tour was not chronological, although this presentation is, sort of. I selected some music to help blend the disjointed nature of the audio. We start with Mary and her mom, Betty. Then that’s Mary having a very in-depth conversation with Santa Claus when she was maybe five. I think that was a Halloween costume or something. I don’t know.

This is one of my favorite pictures of Mary Casey.

What is she doing there? Five or something, and she’s on, she’s on the phone with somebody looking very attentive and just yakking up a storm now. Then, the 610 North picket was in the front yard with the three Casey kids and one on a horse.

She got the part of Aurora in the school play. She was in eighth grade, and they went out and bought or rented a spinning wheel.

She took us all to Yankee Stadium. Dad had been to Yankee Stadium when he was a young guy in the Navy and not since.

She asked for dispersal of her cremains on the oceans. No wonder.

Casey doing stand-up comedy

Jan and Danny sign offHealth Hats: The memorial happened Memorial Day weekend. It was a hoot and a half. So, from your perspective, what did you get out of it?

Jan Oldenburg: It’s a great question. I, because I have been living with Casey’s dying now for more than a year. And by that not just dealing with the emotional fallout of it, but also dealing with the state issues.

Health Hats: And because you’re the executor, right?

Jan Oldenburg: One of the executors. Because I’m the executor. I have felt as if along the way. I was probably the only person there who, I knew everyone except one of Casey’s cousins. And I think I was the only person at that intersection of all the moving parts. And I also had been talking to various people as I was trying to figure out, things about the estate. And so, in some respects, I had thought that I really had done my grieving. But one of the things I realized was that I really needed the ritual and the ceremony and the gathering together and the telling of stories to have the process come to some sort of completion. And for me, that was important.

Health Hats: I loved hearing about all these different chapters in Casey’s life. I especially, appreciated hearing about Casey as a sailor and a hunter. These were nowhere in my grasp of her I knew she was very eclectic. I loved hearing the stories. Grieving is an opening of your heart. You just don’t know When you open your heart, you don’t know. You don’t know what’s going to come out. So, it’s nice to grieve in a safe space and I felt like this was safe and the grief, certainly the, emotion, the, that feeling in your chest and your throat and your God, everything, your gut. But also, oh, another adventure I felt my. My life with Casey, was an adventure and so this was nice to have yet another adventure with her.

Jan Oldenburg: Absolutely. It was, I was so glad I went and so honored. Be in. The event itself and frankly, in Casey’s life, she cast a big shadow, but she also opened a big tent. It was it was lots of room for every kind of person and every kind of adventure and I really felt like I got a little bit of a snippet of that from, the time I was able to spend with Casey, and it was renewed and refreshed by hearing those stories from people from all over her life.

Health Hats: Thank you.

Jan Oldenburg: Thank you, Danny.

Reflection from HankSnuggled in my forgotten hunting bag as we left for the dock were several miniatures: Captain Morgan rum, Tito’s vodka and Hennessy Cognac, which I’d intended the three of us to stream overboard to cheer Casey along, with a travel-size flask of Tabasco as coda/kickstarter.

This morning, I took them down to my creek, where Casey often crossed the bar, and whose riffles sang to her as she stalked Pecker Wood deer and turkeys. Indian Creek flows into the Piney, a tributary of James His River, and on to the Chesupioc, as the original owners knew it, whence mountain waters meander offshore to mingle with that great river in the sea we call the Gulf Stream. Should Casey lag or flag on her long last voyage, may the tipple tide her Thamesward.

I’m so very very glad I did. It wonderfully expanded my understanding of Casey, with whom my relationship was long and loving but limited. Although she doubled in brass, she left her advocacy career pretty much at home when she came to Pecker Wood, focusing on hunting, fooding, computer tutoring and mourning the decline of the newsbiz, so the round-table discussion of her many parts was a revelation to me. I had signed up for the trip largely from a sense of duty to her shade and you and Myra, but it turned out to be deeply healing. And y’all’s cheerful, capable companionship and caretaking was Casey’s final gift to me

I’m grateful to you who have the critical roles as listeners, readers, and watchers. Subscribe and contribute. If you like it, share it. See you around the block.

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The post Adieu Mighty Casey, Flow On first appeared on Danny van Leeuwen Health Hats.

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Shana Robinson shares her day-to-day Long Covid challenges using the “spoon theory,” a metaphor for the limited energy reserves people with chronic illness face

Summary

The episode explores the fascination with prolific enigmatic conditions, which are common yet complex and often misunderstood illnesses like fibromyalgia, chronic fatigue syndrome, lupus, endometriosis, and long covid. These conditions highlight systemic issues in healthcare, such as various biases and the complexities of corporate medicine and research. Shana Robinson, having personally experienced misdiagnosis and the challenges of navigating these conditions, emphasizes the intersectional barriers faced by women, people of color, and those with mental and spiritual health challenges.

Shana shares her journey with long covid, discussing the day-to-day management challenges using the “spoon theory,” a metaphor for the limited energy reserves people with chronic illness face. Shana’s experience underscores the difficulties in obtaining a diagnosis and appropriate care, reflecting broader issues in the medical system’s handling of chronic conditions.

Throughout, the podcast touches on themes of resilience, the need for advocacy, and the struggle for recognition and adequate research in treating long covid and similar conditions. The conversation also highlights the importance of compassion and understanding within the medical community and society towards those living with chronic illnesses.

Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below.

Contents

Table of Contents

Toggle Episode + Proem + Podcast intro + Learning health is fragile + Spoons, Spoonies + Pace Yourself versus Spoons + Budgeting spoons + Recovery mode variation in spoons + Contracting Covid + Opening up + Yikes, Long Covid? + Tired of Pursuing Answers + Long Covid Center + Asynchronous communication + Finally Diagnosed + Call to action + Rebel Health + Social media help – 2-edged sword + Useful help + Some compassion, please + What’s in a Name? + Chronic Disease Management – Diagnosis, Symptoms, Care, Treatment + Investing in Long Covid + Reflection + Podcast Outro Please comment and ask questions:*

at the comment section at the bottom of the show notes
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via email
YouTube channel
DM on Instagram, Twitter, TikTok to @healthhats

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk
Leon van Leeuwen: article-grade transcript editing
Oscar van Leeuwen: video editing
Julia Higgins: Digit marketing therapy
Steve Heatherington: Help Desk and podcast production counseling
Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection, including Moe’s Blues for Proem and Reflection and Bill Evan’s Time Remembered for on-mic clips.

Podcast episodes on YouTube from Podcast.

Inspired by and Grateful to

Jeff Horner, Yaneer Bar Yam, Melissa Reynolds

Links and references

EpisodeProemAnts: Prolific and enigmatic. Image by Open Art AI in style of Paul Barson

Prolific enigmatic conditions fascinate me. Prolific (many) is the opposite of rare (few), so not a rare condition. Enigmatic means mysterious riddle. Examples of enigmatic conditions include fibromyalgia, chronic fatigue syndrome, lupus, endometriosis, and long Covid. Enigmatic conditions put a spotlight on isms – racism, sexism, ageism, ablism, paternalism. They reveal a near-universal discomfort with uncertainty. And when you pull back the curtain to try to search or solve, you find the weight of corporate medicine, the research industrial complex, and vested-interest policy making. I know the frustration of years of misdiagnosis. I was misdiagnosed with cardiac disease when I had multiple sclerosis. My privilege insulates me from many cultural barriers and humiliation experienced by women, people of color, and those with mental and spiritual health challenges arising from the diagnostic and treatment journey of those with and caring for enigmatic conditions.

Since 2000, I’ve produced many episodes about Covid. You can find them here through this link or in the show notes: People and communities living safely in a pandemic, making choices for best spiritual, mental, and physical health.

Over the past few years, I’ve tracked the emergence and response to long Covid, been attracted to lived experience, and identified experts, resources, and advocacy. This episode features Shana Robinson, who is intrigued by the opportunity to tell her story and nervous about the energy it could consume. Shana doesn’t live her life out loud as I do. I’m grateful that Shana agreed to join us today.

Learning health is fragileHealth Hats: Shauna, good that you could be here.

Shana Davidson: This is my first podcast ever.

Health Hats: It’s painless. We’ll have a good time.

Shana Davidson: Let’s see.

Health Hats: We’ll see. When did you first realize health was fragile?

Shana Davidson: My father is a surgeon. When I was about 14, he had a patient in her forties with melanoma, and the cancer had spread. I can’t remember what operation he did. But he started visiting her daily at the hospice. She was in her forties. She had two young kids, melanoma. Gone. She died. And that stuck with me. First of all, I live in fear of melanoma, but also that you can be very young and have something and die from something. So, that’s the first time it became evident to me.

Spoons, SpooniesHealth Hats: In several conversations we’ve had up to this point, you’ve been educating me, and I wanted to chew on more, which is this whole issue of spoons. I knew that people with fibromyalgia and chronic fatigue syndrome called themselves spoonies.

But I had yet to learn what it meant. And now that you’ve introduced me, I can’t stop thinking about it. Could you say more about it and what it means to you?

Pace Yourself versus SpoonsImage by Teodor Drobota on Unsplash

Shana Davidson: The place to start when you get this diagnosis, whether it’s long Covid or chronic fatigue or anything like that, or after you’ve had surgery, pace yourself. What does that mean, right? How do I do it? See how you feel as you go about your day. That doesn’t make any sense to me. I was fighting long Covid, so hard. I think I can push through it. I need to get my work done. I own my own business. There was much pressure.

Then, through various happenstances, the spoon started to click with me. It’s a system designed by chronic illness advocate Christine Miserandino, who has lupus. She was in a diner trying to describe to a friend what it felt like to live with chronic pain. And she was in a diner and could grab the closest thing around her: a fist full of spoons.

Budgeting spoonsAnyone with a disease like this starts the day with a certain number of spoons. For most people, it’s 12. For people who don’t have something like this, you have unlimited spoons, and you don’t get tired. Tired and fatigue are different. If you have 12 spoons, how am I going to spend them? At the beginning of the day, you have a constant bank account or spoon account with a budget. If I must do chores around the house, it’s two or four spoons. Driving somewhere can be two spoons.

Doing a conference call can be two spoons. I have some conference calls that feel like four spoons. When you run out, you’re just done. You can see how quickly taking a shower costs two spoons because of the surprising amount of physical exertion that goes into taking a shower. Then, I have difficulty regulating my body temperature. So, there’s a recovery period from taking a shower. I like to spend time in the garden, which sometimes is heavy physical work. Enjoyment can offset physical work. So, if it were a workout I haven’t done in three years, a proper workout would be four spoons. But because I enjoy it and casually pull some weeds here and do a little snip there, it costs me only two spoons.

The skill in it is that you can search the internet and say taking your pills costs one spoon. I am taking your kids’ costs to school costs x number of spoons. But the wisdom is to figure out the number of spoons for me. The spoon template might say driving will cost you x number of spoons. But I live about 70 miles outside of Washington in the Shenandoah Valley. Any drive I take is gorgeous. So that doesn’t cost me any spoons.

It gets tricky to figure out how many spoons you start the day with individually because there’s no way to know without experience and trial. Somebody may give you a budget. A friend of mine is not doing very well at all. And she says I have about five spoons at the beginning of the day. But some people will have 15 or 16. With all the apps, Apple watches, and things we have in our lives now, some apps are working on individualizing your budget at the beginning of the day. So that’s considerable help.

Image by Teslariu Mihai on Unsplash

Recovery mode variation in spoonsHealth Hats: I know people in recovery mode from whatever. I tell them to do one degree less than they think they can. But spoons are different. Are there days when you have one more spoon? Or does it stay steady?

Shana Davidson: That’s the problem. I don’t have any external thing telling me how many because every day is different, right? As the saying goes, you have good and bad days. You might have more spoons on good days, but you don’t want to spend so many spoons that you end up the next day with fewer spoons. I would say that saying do 1% less or X percent or 5% means you must know what a hundred percent is like, and you don’t. The other thing I will say about counting spoons is that the woman who developed the system did it because she was trying to communicate with a friend. I want to say to someone that I’m canceling our plans. I don’t have any spoons. I’m canceling this meeting because I don’t have any spoons. I’m canceling this doctor’s appointment. I don’t have any spoons. That makes me feel a lot less guilty. A big part of long Covid is feeling guilty for not being part of your life and the life that you had with people in your life. So, communicating why you’re ghosting everybody, as the kids say, is excellent. But as you can tell, initiating someone into this language of spoons takes quite a while. So, you can’t do it with businesspeople. I can’t do it that way. You can’t explain to somebody who’s your client or your boss; this is why I’m not doing my work today. They’re not going to be cool with it.

Contracting CovidHealth Hats: Okay, so you got Covid. When was that?

Shana Davidson: I got Covid in September 2021 and then got in again in January of 2022. I got Covid a third time, and now I’m blanking on when it was. But the third time was the most challenging. Maybe I’ve blocked it out.

Health Hats: The most challenging time, meaning you had more symptoms.

Shana Davidson: I need to remember. I think I have blocked it out.

Health Hats: So, was there? Between these episodes, did you feel better?

Shana Davidson: No.

Health Hats: Okay. But we know that you had three episodes because you tested negative for a while, and then you tested positive again, and then negative, and then positive.

Opening upShana Davidson: Back then, you’re talking 2021, which is relatively late into the pandemic, but everybody’s still masking, right? We have the vaccine, and it was one of those periods where you’re, this is over now. And then the whole pandemic kind of went away, you know?

Health Hats: Yeah.

Shana Davidson: Yeah. You’ll remember that first summer we thought we could open. I didn’t keep testing myself throughout the process because it took a while for me to figure out that this was what I had. I had it in September of 2021. It could have been better. I got better.

I went to what amounts to a college reunion. And you stroll the campus, you do this, you do that. And one of the days, I was tired. I’m just going back. I need to sit. I started walking across the campus, where I’d walked thousands of times, and felt winded. I broke out in cold sweats.

I had to sit down. I finally reached my car and sat there for an hour doing nothing. That’s when I realized that this was something. And then it was, and I got it again at the end of the year. But I didn’t test in between those bouts.

Yikes, Long Covid?Health Hats: When did long COVID enter your consciousness?

Shana Davidson: At college, I felt weird, but it wasn’t until that moment that I had cold sweats and a bad memory. It was intense.

Health Hats: Had you given yourself the label of Long Covid, and then you went to seek an official diagnosis?

Image from Getty Images

Shana Davidson: I started reaching for an official diagnosis after that episode. I had the cardiac stress test. I had the pulmonary test, the transesophageal ECHO, and the ultrasound. And every doctor you see says there’s nothing wrong with you. Oh, you’re young. Go live your life. There’s nothing wrong with you. And you know your head is exploding because you’re like, no, there’s something wrong with me. And to this day, I’ve only had one doctor who has said I’ve treated patients with similar stories. I know what this is. I know how to handle your case. She’s a cardiologist. So almost everybody just tells you you’re crazy.

So, I pursued it aggressively. And then you get so many people not listening to you and so much media out there, right? Did it come from here? Did it come for that? What about this test? What about that study? And you pursue, oh, maybe this is what it is.

Tired of Pursuing AnswersI’m at the point where I’m tired of pursuing it. I don’t feel any better. Some non-Western medicine things that I’ve done, such as acupuncture and some herbs, have treated symptoms, not causes. But you get to a point where there’s a new study, there’s a new this, there’s a new that.

And you know what? I’m tired. I don’t want to pursue this anymore. Someone else will figure it out and let me know.

Health Hats: Okay.

From Getty Images

Shana Davidson: This is where I sit. I do my acupuncture, I take my herbs, and I use my spoons, and that’s just where things are right now.

Health Hats: Your find business is so insidious. The doctors mean, this is what I know about. They didn’t find anything they knew about that could help you.

Shana Davidson: Yeah.

Health Hats: But they’re not saying that.

Long Covid CenterShana Davidson: I am in a program that, for lack of a better term, prescribes acupuncture right through George Washington University (GW). So, I have someone saying, no, you’re not crazy.

Health Hats: Okay, you’re in a program. What does that mean?

Shana Davidson: It isn’t a study, but a group of people with long Covid who happened to work at George Washington University. We’re curious, and we’re interested. They all had long Covid, but maybe they were interested in treating this and its symptoms.

We’re not going to figure out the cause anytime soon. We’re just not, and that’s what they do. I was lucky to get into that program. And depending on my symptoms, I talked to them. At first, it was regular, and now it’s sporadically or when something crops up, but I had something happen where I lost my sense of taste for six months. So, I contacted them and asked what this was about. And they didn’t know.

Asynchronous communicationHealth Hats: Are there some asynchronous communication platforms you use?

Shana Davidson: Yes. They said you don’t have to come into our office initially. We’re going to do this over video. I don’t know what software they use; it doesn’t matter. But we won’t drag you into the doctor’s office, which is one of the hardest things you do with this. One of the hardest things I do is go to the doctor. A big part of it is figuring out, okay, how will I tell this story? How am I going to get them to listen to me? And so you’re like strategizing your doctor’s appointments, which is incredibly stressful and costs many spoons. I’m lucky that I got into that program.

Finally DiagnosedDentist examining horse’s mouth cartoon in OpenArt AI

Health Hats: I had moved to Boston before I got the MS diagnosis. I got a different family practice doctor because we moved. I was very fortunate because I said something was wrong; she believed me, and she dogged it until we got a diagnosis. It took many months. I don’t know whether I was fortunate to have this family practice doc, I’m a guy, or what. I’m trying to figure out why. Don’t look the gift horse in the mouth. It was wonderful to finally have a diagnosis because there’s a menu of things to do.

Call to actionI need your help to expand my audience to younger people in advocacy. I’m doing more short-form videos. Please help by pointing me to communities of young advocates and the channels and hashtags they use so I can listen and learn. I now have one URL for all channels and media. https://linktr.ee/healthhats, where you can subscribe, access episodes, my website, and social media, and search the Health Hats archive. Your support is appreciated.

Rebel HealthRebel Health by Susannah Fox

One of the things that to me is interesting when a person has an exhausting chronic illness. Is that the point where? They have a spoon that they can afford to use for advocacy. Whether to use Susanna Fox’s words, she talks about seekers, networkers, fixers, solvers, and champions.

And having that people’s advocacy, like she has a book, Rebel Health, and that when people are rebels in healthcare or hacking healthcare, they take one or more of those approaches, and it seems like you’ve had, from time to time, a spoon to invest in advocacy.

You okay?

Social media help – 2-edged swordShana Davidson: I am wondering if I’ve invested well.

Health Hats: Go ahead, please.

Shana Davidson: I’ve written to some newsgroups or Facebook groups or posted things on Instagram. But the number of people who’ve told me to do a cleanse or some diet or you have some cockamamie thing that you’ve pulled out of the sky. Hey, if that works for you, rock on.

But the idea of going on even, some days, I eat what I find. I can’t be cooking a meal. I can’t be meal prepping. What can I reheat today? So, the idea of doing a cleanse or a special diet – no, I’m not. I don’t have spoons for that.

Useful helpShana Davidson: And then it’s you’re crazy, lazy, and just don’t want to work. Here are all the ways I can help you, and it’s not useful help?

Health Hats: Yeah. I know. When I had a son who had melanoma and ended up passing, we realized early on that people wanted to help and that one of our roles as care partners was to make sure we had a list of things for them to do. People who loved us loved him, wanted to, or could do that would be helpful.

Because people don’t know, and you’re right, it’s primarily awkward.

Shana Davidson: people tell me I need to take a break.

Health Hats: Oh.

Shana Davidson: That still hasn’t been happening. It’s so that’s a spoon. I am dealing with, if not two.

Image by OpenArt AI

Some compassion, pleaseHealth Hats: What would you like to happen, and in what way? Think about the medical system and the community. What do you think? What would be helpful?

Shana Davidson: Some compassion generally; I think a big part of the hump here is that everybody wants to be over Covid. We want to put it behind us for excellent reasons. But for a lot of us, it’s still happening. And so when you say I have long Covid with some people, it triggers some people who are taken aback.

They say, oh, are you still infectious? Are you going? Or they say: that’s not the real thing. Those are the two options. 90% of my responses fall into either of those categories. And then there’s about 10% that’s compassionate, but they can’t help you. So, there’s a considerable effort to increase government funding for research. The amount of money they’re spending is tiny. I don’t have the figure on the tip of my head because of the brain fog, but it’s tiny.

What’s in a Name?Shana Davidson: I would love it if we could find a name for this disease that didn’t have the word Covid in it. We would be taken much more seriously as patients. There also needs to be a dramatic shift in medicine for diseases that we can’t explain. It’s the same thing with people who have chronic fatigue and struggle with being told that they’re lazy or they don’t want to do whatever and are not taken seriously. And I don’t have any optimism about any of that. What can you do? Because it’s more about what I can do.

Chronic Disease Management – Diagnosis, Symptoms, Care, TreatmentHealth Hats: Okay. Compassion. Yes. Take it seriously. Research our healthcare system isn’t set up for, I was going to say, for chronic illness, but I don’t mean that, maybe for diabetes, for heart disease.

Shana Davidson: I think it’s set up for things you can quantify. And you can understand that if you’re coming from a Western medical or scientific method perspective, we want to identify and treat the cause. Treat that instead of focusing on the symptoms. Frankly, that’s something you can bill for. I have reminders telling me to do things. This is a reminder throughout the day to eat lunch because otherwise, I don’t, which significantly helps. So that’s what that was.

Health Hats: That’s good. Before we wrap up, I’d like to ask what we should have discussed that we still need to discuss.

Investing in Long CovidExhausted charcoal in OpenArt AI

Shana Davidson: Those are some big topics. The spoons are the best way to go. Also, there are some apps in development. We are working on solving the problem of counting spoons. The most challenging part is figuring out how many spoons you start the day with. Some people trying to figure those out also have long-term Covid and comparable diseases. But that would be something tangible that would help many people significantly. Again, a significant amount of money needs to be invested in this. The number is 26 million people dealing with long-term Covid. Compared to other diseases that are much more acute, we won’t win that battle. So, I’m saying that in some, it feels very hopeless.

Health Hats: I’m very interested in the long-term Covid. I do episodes about it when I want to learn something because it’s an excellent way to learn. And I’ve learned that the way to do that is to start with people with lived experience. So, you’re the first.

So, thank you very much for taking the time. I appreciate it, and I wish you the best.

ReflectionShana, thanks for your generosity. When I first learned about spoons, I thought it was a cool idea, helpful management and communication tool, a good metaphor. But it doesn’t apply to me. However, I just returned from a trip to Florida to spread Mighty Casey Quinlan’s ashes in the Atlantic. I almost didn’t go as I tried to manage my weight, my energy, my vision, nerve pain, new meds with side effects – the usual mishmash. But it was for Casey, her family, my peeps, and me. I went. I have had a blast. Now I’m exhausted. Perhaps budgeting these spoon energy units spans weeks for me with MS, not days as for those with chronic fatigue and long-term Covid.

I plan to produce more episodes about long Covid. I have two episodes ready to be produced about travel to Georgia’s Cloudland Canyon State Park, motoring around in an all-terrain wheelchair, and celebrating Casey Quinlan as we scattered her ashes in the Atlantic. I’m interviewing special guest Aaron Carroll, CEO of Academy Health, in late June. Be well.

Related episodes from Health Hats

Covid-19

Accessible Yoga: Honor Your Body

Fibromyalgia. Managing Pain. Doing the Work.

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The post Exploring Long Covid One Spoonful at a Time first appeared on Danny van Leeuwen Health Hats.

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Turn-around: Grandson interviews Health Hats about his Zelig-like career path and choices: unpredictable, privileged, mentored, supported, and spiritually healthy.

Summary

Health Hats is interviewed by his editor, grandson Leon, delving into a discussion about his diverse and impactful career. The episode starts with Leon interviewing Health Hats about the origins and motivations behind the podcast, tracing back to a serendipitous naming and a road trip that solidified the podcast’s visual identity.

Health Hats shares his journey from opting out of a higher-paying job that required him to cut his long hair to embracing a path in healthcare as a psychiatric aide, which led him to nursing school. The story also touches on being a male nurse in the 70s, transitioning from direct care to significant hospital and quality management roles.

Leon and Health Hats discuss the significant impact of personal decisions on career paths, the unpredictability of life, and the profound influence of one’s birth and circumstances. Health Hats reflects on his efforts to improve healthcare systems, advocating for better staff and patient conditions and participatory health. The episode explores Health Hats’ professional life, his philosophy on work-life balance, his role as a change agent, and his commitment to continuous learning and improvement.

Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below.

Contents

Table of Contents

Toggle Episode + Proem + Podcast intro + Birthing Health Hats + Nursing school – what’s hair got to do with it? + Wanted a life + First male public health nurse in Western Mass + We don’t hire men in nursing here + Retiring in our thirties as back-to-the-land hippies + Couldn’t manage an emergency at home + Twelve-bed hospital + West Virginia, a Third World state + Advanced Cardiac Life Support + Call to action + Volunteering for the Emergency Squad + From direct care to management + Change agent: staffing and visiting hours + Remote Learning for a Master’s Degree + Moving on + Student of organizational health + Outspoken, driven change agent + Best Boss Ever + The will to change – leadership + No, lay me off + Retiring + Professional life, more than the job + Can’t keep a job + Reflection + Podcast Outro Please comment and ask questions:*

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, Twitter, TikTok to @healthhats

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk
Leon van Leeuwen: article-grade transcript editing
Oscar van Leeuwen: video editing
Julia Higgins: Digit marketing therapy
Steve Heatherington: Help Desk and podcast production counseling
Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection, including Moe’s Blues for Proem and Reflection and Bill Evan’s Time Remembered for on-mic clips.

Five-minute episodes on YouTube.

Inspired by and Grateful to

Jim Bulger and Bob Doherty (deceased), Eric Pinaud, Jane Sarasohn-Kahn, Luc Pelletier, John Marks, Ann Boland, Lynn Hubbard

Links and references

Are medication error rates useful as a comparative measures of organizational performance? was published in The Joint Commission Journal on Quality Improvements in 1994 receiving the David K Stumpf Award for Excellence in Publication from the National Association for Healthcare Quality. The article was referenced in the book, Error Reduction in Healthcare by Patrice L. Spath in 2000.

1977 article about Danny van Leeuwen, the first male public health nurse in W Mass

It sounds like a Zelig effect (if you know Woody Allen) or a Forrest Gump effect (if you know Tom Hanks)

Jane Sarasohn Kahn, a blogging health economist

West Virginia

The University of Minnesota ISP Program

EpisodeProemAs you may know, my production team includes Grandson Leon, who edits my audio transcript for readability for the 275 Health Hats, the Podcast, followers who prefer reading to audio or video. I call it an article-grade transcript. Leon and I speak often, when I drive or pick him up for school or he drops in for a visit. He critiques warmly and confidently. He often comments on stories and experiences in the episodes. Recently, Leon suggested that he interview me for an episode about my career. You’ve probably heard some of these stories before. In the last episode, I told you about being the first male public health nurse in Western Massachusetts. But you haven’t heard them all by a long shot. Expect more career stories over time.

Image from the movie Forrest Gump

Perhaps a theme for this episode is the unpredictability of life served by the gifts of spiritual health, the ability to find support, and the incredible privilege of birth and circumstances, setting me up to make choices that accrue to my benefit. Sounds like a Zelig effect (if you know Woody Allen) or a Forrest Gump effect (if you know Tom Hanks)

For listeners, please excuse all the times I seem to be running over Leon – talking over him. It’s a function of technical challenges I couldn’t correct. I assure you that I was more respectful than it sounds.

Birthing Health HatsHealth Hats: Hi Leon. Thanks for joining us.

Leon van Leeuwen: Great to be here. What got you to start Health Hats, the podcast?

First Health Hats logo by Danny McGinnis

Health Hats: I started blogging twelve years ago. I met Jane Sarasohn Kahn, a blogging health economist, in 2012. When I told her my story, she said, oh, you’re Health Hats. You should start a blog. I did this with help from Uncle Eric and others. Soon after, I drove on a several hundred-mile road trip to the Cumberland Gap in Maryland. I rode in the front, while Danny McGinnis, an artist, sat in the back. He drew an image of my hat on his iPad. I loved it as a logo! How much can I pay you for this? $75.

Leon van Leeuwen: Wow.

Health Hats: I set up a website and began blogging weekly. Seven years later, in 2018, I received an email notice for a podcasting course from Seth Godin, whom I have followed for a long time. He’s a marketing/inspirational guy sending a daily post, saying the next day was the last day to register for an eight-week podcasting course at the low price of $300. Early in the course, the 350 attendees broke into groups of about 12 or 15. My group became close and supportive of each other. We still meet weekly every Sunday afternoon. We’ve been doing that for perhaps 45 weeks out of the year since 2018. That got me started and motivated to keep podcasting.

Nursing school – what’s hair got to do with it?Danny/Health Hats circa 1973

Leon van Leeuwen: How did you get into healthcare? That’s what you talk about in your podcast.

Health Hats: I attended Wayne State University for two years and dropped out to travel extensively – hitchhiking in Europe,

Columbia, Mexico, British Columbia, and across the States. When I came back looking for work, I had a choice between a job reading water meters or working as an aide at the Detroit Psychiatric Institute. The meter reading paid more, but I had to cut my hair, and I didn’t want to cut my hair. So, I took the aide position.

Leon van Leeuwen: How were those your only two options?

Health Hats: I was in the mode of looking, and those were two jobs I applied for. I can’t remember how many jobs I applied for, but those are the two I could get. I must have had interviews because how else would I know I had to cut my hair? They would’ve had to see me. The nurses at the Detroit Psychiatric Institute encouraged me to attend nursing school.

Leon van Leeuwen: Wow.

Health Hats: When I interviewed for the nursing student position, they asked about my hair. I said I can put it in a bun. They said okay.

Detroit Psychiatric Institute abandoned

Leon van Leeuwen: Checking the water meters paid you more than working as an aide in a hospital?

Health Hats: Yes. I made $3.00 an hour as an aide. I could have earned $3.50 an hour as a meter reader.

Wanted a lifeLeon van Leeuwen: From there, did you go to medical school?

Health Hats: No, I went to nursing school. A few people asked why I wasn’t going to medical school. Why nursing? I wanted to have a life. I felt that medical school was, all in all, too much education and too expensive. The nursing school I attended was a two-year program that cost only $11 a credit.

Leon van Leeuwen: Wow.

Health Hats: Yeah. Even then, it was cheap. Wayne County Community College.

First male public health nurse in Western MassLeon van Leeuwen: You mentioned you were the first male nurse in Western Mass.

Health Hats: I was the first male public health nurse in Western Massachusetts in 1976.

Leon van Leeuwen: What was it like to be the first male nurse in that area?

Health Hats: Home care was a great place and way to start. I was excited because I didn’t want to work in a hospital. I had been working in a nursing home before that. So, I liked the idea of home care. But being a guy was different. My bosses and other staff were very concerned. How would female patients take to having a guy care for them? I told them I never had any issues when I was one of two male nursing students in my class attending nursing school. Patients want a kind word and a warm hand. Gender doesn’t usually matter.

Article from the Holyoke Transcript-Telegram Aug 19,1977

Leon van Leeuwen: Yeah. When you’re sick or not feeling well, you are not only thinking about that. It seems a little weird to ask if you’ve had any hardships for being a man, but did you get treated weirdly?

Health Hats: I never did; I never was in that situation. Sometimes, people in certain religions might not want a guy taking care of a woman. But I never had that happen to me. I didn’t have to deal with it. On the other hand, I may have benefited from being a guy.

Leon van Leeuwen: Yeah, you benefit from being a guy often, but was home care your first job out of nursing school?

Health Hats: I worked in a nursing home for several months. It mainly was passing pills, medication management, and supervising aides. I wouldn’t say I liked it.

Leon van Leeuwen: How long did you do home care?

Health Hats: Four and a half years.

We don’t hire men in nursing hereImage of Danny and Ann’s wedding in 1975 by Rich Rieger

Leon van Leeuwen: Where did you go after home care?

Health Hats: Grandma and I married in Detroit in 1975, a week after I graduated from nursing. Within weeks, we were trying to decide where to move, and we had several choices: Northern California, West Virginia, or Western Massachusetts. We decided against Northern California because it was too far from the family in Buffalo and Detroit. So we went down to West Virginia, and I went to the local hospital to find a job. They were not interested in hiring a guy, so we ended up in Western Massachusetts.

Retiring in our thirties as back-to-the-land hippiesHouse built by Ann and Danny in WV circa 2000

Health Hats: In 1979, when I was 27 and Grandma 28, we retired to be back-to-the-land hippies in West Virginia. We built a house and had your Uncle Ruben at home. I worked with my friend, Rich Rieger, as Sunnyside Construction. Then, one day, the Director of Nursing at the local hospital, Stonewall Jackson Hospital, the successor to the Director who wouldn’t hire a guy, heard that there was a new nurse in town. She wanted me to come and work for them part-time, which I didn’t do for a while. But eventually, I did because we needed the money.

Leon van Leeuwen: Yeah, it is astonishing that initially you tried to apply, but they didn’t let you, and then they asked you to work there.

Health Hats: It was much better to be wanted.

Leon van Leeuwen: How long did you take off from nursing?

Health Hats: Three to four years.

Couldn’t manage an emergency at homeBoland van Leeuwen’s in West Virginia 1982

Health Hats: The reason I got back into nursing was that I was very concerned that even though I’d gone to nursing school and had four and a half years of experience as a professional nurse, I felt like I didn’t know how to handle an emergency that might happen in our community, Jupiter Hollow, the name of the intentional community we lived in. So, I trained as a paramedic.

Leon van Leeuwen: Nice.

Health Hats: Your grandmother and I started working at the volunteer emergency squad. I also started working per diem in the

medical-surgical unit at the local hospital, Stonewall Jackson Hospital.

Twelve-bed hospitalThen, I got a job in an emergency room at a 12-bed hospital about 30 miles away in Braxton County.

Leon van Leeuwen: Was that the emergency room or the whole hospital?

Braxton County Memorial Hospital circa 1990

Health Hats: The whole hospital had 12 beds. They had an emergency department staffed by one nurse. I worked the midnight shift. We would call in a doctor when a patient arrived. If somebody came in via the emergency squad, the squad would have to stay and help because only one other nurse was working with the 12 inpatients. Pretty wild, to say the least. But then I returned to Stonewall Jackson Hospital to work in the emergency department. That became a regular full-time job.

Leon van Leeuwen: Was the 12-bed hospital busy at all? I can’t imagine. It would be ridiculous if it were just one nurse.

Health Hats: A trickle of patients would come in, but if there was a heart attack and a car accident simultaneously, that was a disaster. We would have to call people in literally. It was an excellent job. I learned so much. I had to be prepared, manage, anticipate, have the equipment, and get help.

West Virginia, a Third World stateHealth Hats: It was insane. On the other hand, West Virginia is a third-world state, meaning it is poor.

Leon van Leeuwen: Is that an actual term for a third-world state?

Health Hats: It’s what I say. I mean, it’s poor. The money is in the resources of coal, gas, and lumber. It was sparsely populated, with three main cities: Morgantown, Charleston, and Huntington. Remoteness and size made adapting necessary. The state emergency services system was well-integrated and managed. I could radio the Charleston Emergency Department if I were alone without a doctor, yet they would be available via the radio’s speaker. I could talk to an emergency physician while caring for patients by myself. They would ask me questions about the patient’s condition and advise me while calling an ambulance or sending a helicopter. So, although I was alone, I wasn’t without medical support.

Leon van Leeuwen: Was this at the 12-bed hospital? Was it different once you got to Stonewall Jackson Hospital?

Stonewall Jackson Memorial Hospital sign circ 1985

Health Hats: Yes. Stonewall Jackson was a 70-bed hospital. At night, there would be two nurses in the Emergency Department, an aide, and a doctor, who was usually a resident, sleeping until patients arrived. So, there was somebody. In Braxton County, the 12-bed hospital, doctors were at home, and it would take them 20 minutes or more to get in.

Advanced Cardiac Life SupportLeon van Leeuwen: Did the experience of working by yourself help you later?

Health Hats: First, I had to be confident – have hutzpah – because otherwise I couldn’t manage it. While becoming a paramedic, the people I met in Morgantown and Charleston taught me Advanced Cardiac Life Support, ACLS. Unfortunately, Neither Braxton County nor Stonewall Jackson Hospitals used ACLS then. So, I started an ACLS training program in the region. From my training and work in Emergency Departments, the people I knew around the state came to help teach. They were a gift! The skills of the people I worked with improved. Much better for me.

I’ll tell you a funny story: when your Uncle Ruben was eight, he and your dad would come to where we worked at the emergency squad, me as a paramedic and grandma as a driver. Our boys would come and bunk while we went on emergency squad runs. Ruben got interested in ACLS, and I would take him to some classes. Then, I took him to the state meetings where we trained people to teach it. He studied along with the doctors, nurses, and paramedics. He eventually took the test and almost passed. He could read the EKG strips, know the algorithms and medications, and intubate. He just forgot to auscultate (listen) to the lungs after intubation.

There was a cardiologist at Stonewall Jackson Hospital who turned his nose up at Advanced Cardiac Life Support.

Leon van Leeuwen: What do you mean by that?

Health Hats: He didn’t think he needed it because he was the cardiologist.

Leon van Leeuwen: He thought he already knew everything?

Health Hats: Eight-year-old Uncle Ruben took the ACLS course, which put the cardiologist to shame. The doctor didn’t know the algorithms, so he couldn’t use other ACLS-certified doctors, nurses, and paramedics well. The cardiologist ended up taking the ACLS course, too, because Ruben was taking it.

Leon van Leeuwen: Do you think that’s how Uncle Ruben got into teaching?

Health Hats: I have no idea.

Call to actionI now have one URL for all things Health Hats. https://linktr.ee/healthhats to subscribe for free or with a contribution through Patreon. You can access show notes, search the 600-plus episode archive, and link to my social media channels. Your engagement by listening, sharing, and commenting makes quite an impact. Thank you.

Volunteering for the Emergency SquadLeon van Leeuwen: What was working in the ambulance with your wife like working in the ambulance? Did you see her often if she was the driver and you were a nurse?

Health Hats: Did we get many runs (calls)?

Leon van Leeuwen: Yeah. Or how much did you work together?

Health Hats: It was great. Grandma was my driver. She drove, and sometimes we would have somebody else with us; it was all volunteer. When I worked with other drivers, they were hot dogs and wanted to go fast, like flashing lights, sirens, and so on. I’m not a go-fast guy, but I felt safer since Grandma drove much more sensibly.

Leon van Leeuwen: Yeah. I like using ‘hot dog’ to describe them as hotheaded.

Health Hats: Have you ever heard that term?

Leon van Leeuwen: That’s a good term. I might start using it.

Health Hats: It’s a macho thing.

Leon van Leeuwen: Yeah. I know some people that drive like hot dogs. Did you work in the Emergency Department the whole time you were in West Virginia?

From direct care to managementHealth Hats: No, because I led this ACLS Program, I knew all the nurses in the ICU. When the ICU manager left, the nurses in the ICU came to me and said that I should apply to be their manager. I said, you’re crazy; I’ve never worked in the ICU or been a manager. And they said, you’ll be a fine manager, and we’ll teach you to work in the ICU.

Leon van Leeuwen: Okay, so your staff that since you taught, you knew how to manage?

Health Hats: I guess. So, I went to my boss and told her what they were saying. What do you think? She said to apply. I applied, and she hired me. I was an ICU manager for a year or so.

Leon van Leeuwen: Wow. How different was it? Did you still do any nursing work?

Health Hats: Yes, it was a small four-bed ICU. I had a dual work-and-manage job.

Leon van Leeuwen: So, you managed only four beds. How much staff was that, then?

Change agent: staffing and visiting hoursHealth Hats: I think we might have had a staff of twelve. We needed at least two for every shift. Management was interesting. I had to deal with things like having enough staff, and a pool of staff experienced enough to deal with the ebbs and flow of the census, meaning how many patients there are, vacations, pregnancies, or family caregiving.

The hospital was not really into having too many part-time or per diem people because that was the management theory at the time. I thought it was stupid. I argued for more flexibility and was successful with that. It was also the first time I had to deal with a budget, and the ICU was considered a loss leader, meaning that it expected to lose money. I said I’m not leading something that’s losing money. My goal was to break even.

The most significant expense was supplies, and every doctor wanted their own supplies, so you had to stock all this stuff that stayed on the shelf. I was very fortunate that the ICU Medical Director, Alan Hirsch, was an internist from Cleveland.

Leon van Leeuwen: What’s an internist?

Health Hats: An internist is an internal medicine doctor, a physician who takes care of adults, something like a generalist for adults, as opposed to a family practice, which is adults and children. He was working off his med school loans by working in West Virginia. Again, it’s a third-world state that needs clinicians. He was open-minded. We were able to do quite a bit together.

Another thing that we did that drove me crazy was the limited visiting hours. If I was in the ICU as a patient, that meant that Grandma could only visit me from one to two in the afternoon and six to seven in the evening or something like that, two one-hour blocks. The staff thought more visiting hours would interfere with patient care. I thought that was ridiculous. These are the people who are going to have to take care of their loved ones when they go home. If they don’t have any experience dealing with whatever they’re dealing with, and they’re not learning what’s going on with their heart attack or their GI bleed or whatever, they’ll be readmitted. I wanted open visiting hours, meaning we were busy or needed space. We should ask them to step out. But my staff was not happy with me at all. Thankfully, Dr. Hirsch, the Medical Director, was supportive. So, we opened visiting hours.

Leon van Leeuwen: If I had a family member in the ICU, I’d want to see them, so it’s essential. It is intensive care. They would want to see their family and loved ones to ensure safety.

Health Hats: It is a safety concern. Somebody else is keeping their eyes open.

Leon van Leeuwen: You managed the ICU for a while. Where did you go from there?

Remote Learning for a Master’s DegreeHealth Hats: While a nurse manager at Stonewall Jackson Hospital, the Nursing Director, CEO, and Chief Operating officer encouraged me to get my Master’s. They had gone to the University of Minnesota in the ISP program, a remote learning master’s program. They sponsored me to follow.

Leon van Leeuwen: What year was this?

Health Hats: I graduated in 1993.

Leon van Leeuwen: What was the learning like? When I picture remote learning, I think of Zoom.

Health Hats: No Zoom, then. For the three-year program, students went to the University of Minnesota for two weeks during the summer and stayed in the dorm. During those two weeks, we had half-day sessions, two a day for two weeks, introducing each curriculum chapter to occur over the year. As it was a worldwide program, students in proximity would get together monthly with the CEO of some hospital near them. So, a guy in Kentucky who was a CFO Chief Financial Officer and I went to the University of Charleston Hospital to meet with the CEO, our mentor, for a day once a month. Then, there were regional meetings once a year with several of the monthly groups. Since our monthly group was remote, the Kentucky CFO and I met with the international groups in the regional meeting.

Leon van Leeuwen: Minnesota and West Virginia aren’t close.

Health Hats: The Puerto Rican contingent of the international groups hosted us at the University of Puerto Rico. We traveled a few days around Puerto Rico with our spouses or partners. We took one day for schoolwork. In the second year, we went on a cruise together.

Leon van Leeuwen: Wow. So, for the remote learning, what did you do in West Virginia?

Health Hats: The ISP remote learning program required you to be a working manager because your job was your laboratory. So, if the study unit was about staffing, it was about staffing in my ICU. If the study unit was about budgeting, then courses or modules had to be about the budget of your department, which helped me with the whole goal of trying to break even. I had a lot of help figuring that out because I had this idea that I wanted to break even, but I had no idea how. I was ignorant.

Leon van Leeuwen: Did you accomplish it? Did it break even? What did you do?

Health Hats: Staffing made the difference. Most expenses are in people and materials. So, with help from fellow ISP students, I figured out how to have efficient staffing. Part of that was having that pool of part-time and per diem-trained people. My fellow students helped me determine how to make the business case and why part-time and per diem were cost-effective. And then the equipment, as I mentioned before, and what else? They taught me a lot about strategy and project management.

Moving onHealth Hats: When the Director of Nurses left Stonewall Jackson Hospital, the CEO and COO wanted me to become the Director of Nursing.

Leon van Leeuwen: Definitely.

Health Hats: I didn’t want to. I couldn’t imagine working for the CEO; I thought he was such a jerk, and I just would get in trouble. Then it was time to go. I applied for several jobs through a headhunter and became the Director of Quality Management in Cobleskill, Schoharie County, New York.

Leon van Leeuwen: Wow.

Student of organizational healthHealth Hats: That was my first job as a student of organizations rather than a student of people. The Schoharie County Hospital offered an opportunity for us, so we moved. Your dad, who was not into moving, moved kicking and screaming.

Leon van Leeuwen: Yeah.

Health Hats: That was a challenging job. I tried to leave from the day I arrived, but that’s another story. My next job was with the Healthcare Association of New York State (HANYS).

Leon van Leeuwen: Wow. Okay.

Health Hats: HANYS was an excellent organization. I learned a lot.

Outspoken, driven change agentHealth Hats: I often get in trouble with my jobs because I am outspoken and question things. I don’t suffer gladly. After a few years at HANYS, the Healthcare Association of New York State, I had some difficulties with my bosses. While working at HANYS, I became the president of the Northeast New York Quality Assurance Association (NEQA), a group of regional quality management professionals.

Leon van Leeuwen: Wow.

Health Hats: One day, I had breakfast with my Association leadership team, and somebody said, oh, I heard you’ve applied for a job at Value Behavioral Health (VBH). I asked what Value Behavioral Health is and what the job was. Because it wasn’t me, it sounded interesting, and I struggled in my current job. I called VBH, and they said we’ve done our interviewing and will decide tomorrow, but we’ll give you an interview tomorrow morning.

Leon van Leeuwen: Wow. Okay.

Health Hats: It was my first video interview with my now friend, Luc Pelletier, the VP of Quality for Value Behavioral Health (VBH), and Jim Bulger, the Executive Director of the Troy, NY, regional office. I got the job. In two weeks, I was on to this new job.

Best Boss EverLeon van Leeuwen: You moved around a lot in what you were doing. Do you know why they thought that you applied there? It seems an incredible twist of fate that you applied there.

Health Hats: Another tough job. I learned a lot from Jim Bulger, my best boss. I had been working at VBH for a month or two. I was having what they called open issues, which is a supervisory meeting with the boss. He wanted to know about new employees’ experiences during their first 30 days because they had yet to be acculturated into the organization. He asked: newbie, what do you think? I don’t know what came over me, but I said, frankly, I don’t think we are moving at the pace you want us to. He said: so, what do you think we need to do? I said I think we need to start with you. When it came out of my mouth, I was like, oh my God, I can’t believe I said that.

Leon van Leeuwen: That’s very bold.

Health Hats: He responded, okay, every day I am in town, we’ll both come in at 7:30, and you have half an hour to help me figure out what to do.

Leon van Leeuwen: Wow.

The will to change – leadershipHealth Hats: We met and did excellent work together. We set up a provider advisory panel and a member advisory panel. We figured out that the biggest annoyance of both groups was the preauthorization of visits. If a counselor, psychologist, or psychiatrist wanted to treat someone, getting approval for visits is laborious. Your mom is familiar with this.

Leon van Leeuwen: Yeah.

Health Hats: We did a financial analysis and decided to give clinicians seven visits without a preauthorization review. Radical at the time, still unusual now.

Leon van Leeuwen: Yeah.

Health Hats: If you asked for them, you could have the visits. Then, you would have had to justify needing more. But it saved the company money because we needed less time on the phone dealing with all these requests for authorization and denial appeals.

When we became close friends, I asked him why he responded to me like that. He said I hired you and would be an idiot if I don’t listen to you. I found myself saying that several times to someone on my team. I didn’t really hear their recommendation, so I stopped, thought about Jim Bulger, and followed their lead.

Leon van Leeuwen: Wow. Yeah, that sounds like a great boss.

No, lay me offLeon van Leeuwen: You eventually went somewhere else.

Health Hats: Another four or five jobs.

Leon van Leeuwen: It sounds like you loved it; you had to leave?

Health Hats: A company called Options bought Value Behavioral Health and the merger became Value Options, a different culture. I couldn’t stand it.

Leon van Leeuwen: Oh.

Health Hats: Then I got a job in Cooperstown, NY, the home of the Baseball Hall of Fame, at Bassett Healthcare, a rural health system. I was hired there as Director of Performance Management. That didn’t last long. A couple of years later, they wanted to lay off my staff, and I said no, you’re crazy to lay off my staff. It would be best if you lay me off. They do the work. So, they did.

RetiringLeon van Leeuwen: Wow. So, what was your last nursing job?

Health Hats: If you say nursing, meaning direct care rather than management, that was in the ICU at Stonewall Jackson Hospital.

Leon van Leeuwen: OK, what was your last job before you retired?

Health Hats: I worked at Advocates Inc., an organization that supported about 23,000 people with disabilities, as the Vice President of Quality.

Leon van Leeuwen: Wow.

Health Hats: After that, I retired.

Leon van Leeuwen: I might be misremembering, but when I was a kid, I heard something about you getting fired from that job. How did that happen?

Health Hats: When I arrived at Advocates, Inc., it acted like a mom-and-pop startup organization growing in size and budget before I arrived. I was the first person hired into the C-suite (from the outside, meaning the other senior leaders had worked at Advocates, Inc. for years). Early in my tenure, I observed, that if you want quality, you must have an infrastructure to manage a group as big as you – policies and structure. Too soon, perhaps – I rubbed people the wrong way. In many ways, Advocates excelled. Its motto, First We Listen, is a well-reflected reality. I learned a ton – especially about supporting people with disabilities and including people receiving services in all levels of governance and operations. I still contribute monthly to them as they do excellent work for the community, and want to support them. I didn’t have the best experience at the end. I should have left sooner. But I didn’t. They didn’t officially fire me. It was mutual. They would’ve fired me if we hadn’t had a mutual agreement for me to leave.

Professional life, more than the jobLeon van Leeuwen: Yeah. So, how long did you retire until you started your blog?

Health Hats: Oh, I started a blog before.

Leon van Leeuwen: Wow.

Health Hats: That was part of why they wanted to fire me. I was committed to my job, but that wasn’t my entire professional life.

Leon van Leeuwen: You wanted to do something other than that.

Health Hats: I was becoming a patient-caregiver activist. Their practice was for people in the C-suite to be on call 24 hours a day, 365 days a year. I said, come on, we’re adults here. We can figure out how to cover each other so people can have time off.

Leon van Leeuwen: You wanted more time when you decided to go to nursing school instead of med school. It’s interesting that you still held that up.

Health Hats: Yes. Thank you. I’ve been very blessed.

Can’t keep a jobBefore Advocates, I worked for four to five years at Boston Children’s Hospital, leading their Patient Experience Initiative, another excellent job. I worked with wonderful people.

Leon van Leeuwen: Wow. You’ve had quite the journey to get to where you are and have had many jobs in many fields.

Health Hats: When I got hired at Children’s and introduced to the clinic managers, one of them said, oh, you can’t keep a job, can you?

Leon van Leeuwen: It’s all different positions, too. That was great. That was interesting. Thank you.

Health Hats: Yes, thank you. It’s excellent to have this conversation with you. Thank you for being a part of my podcasting team editing the audio transcript for readers. Thank you for all the work you do.

Leon van Leeuwen: Thank you for giving me the opportunity and paying me. I appreciate it.

Health Hats: Right, honey, I love you.

Leon van Leeuwen: I love you too.

ReflectionImage by Blake Meyer on Unsplash

Two jobs in my youth stand out: selling coffee and donuts to workers at 12 and draft counseling at 16. I started a summer coffee and donut business. My mother loaned me money to buy a PF Flyer Wagon and the first batch of ground coffee, donuts, cups, and utensils. Our Unitarian Church loaned me a large coffee maker. I served workers building my new local school.

My first pro bono job was at 16 when I learned to draft counsel young men seeking to manage the draft or home on leave from Vietnam trying to get out. My goal was to manage my impending draft. When I went to a downtown Detroit church for counseling, the program director suggested I learn to be a counselor myself. I did. I learned the critical skill of profound knowledge of regulations to better serve people making critical decisions and managing their lives.

Two other milestones come to mind: I led the implementation of an integrated electronic health record (EHR) for an addiction treatment provider that also managed behavioral benefits for a local insurance provider. I had never done anything previously with EHRs, tech data, medical records, or apps. I learned to stubbornly insist on core data set cleansing before implementation and the benefits and challenges of a cross-functional stakeholder steering committee. Thanks to one of my best bosses and friends, the late Robert Doherty, and a friend and colleague, June Richardson, for the opportunity.

I don’t believe in bucket lists much, so I’ve only had a few things on that list.

Book referencing Danny’s work with citation

Have my work referenced by someone else. I found a citation in a book on patient safety from my original research published in a national journal. See the show notes for more information.
Mentor some staff to meet their career goals. I prevented the layoff of three staff members by taking the layoff myself and engineering their promotion into management positions.
The penultimate passion in my bucket was to be a good man to a good woman, together raising sons married to strong partners who are excellent fathers. Bingo!

OK, my followers and subscribers who ask me for more about me, Tada! I feel spent. Thanks, Leon, for stirring this up. I’m so proud of you!

I’m grateful to you who have the critical roles as listeners, readers, and watchers. Subscribe and contribute. If you like it, share it with one person. See you around the block.

Related episodes from Health Hats

Bonus #5: Continuous Learning in My Sandbox

Opa Heaven: Titles, Maglevs, Hats, the Universe, Snarkiness

Creative Commons Licensing

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BY: credit must be given to the creator. NC: Only noncommercial uses of the work are permitted.

SA: Adaptations must be shared under the same terms.

Please let me know. danny@health-hats.com. Material on this site created by others is theirs, and use follows their guidelines.

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The post A Forrest Gump Career: Chance, Gifts, Support, and Privilege first appeared on Danny van Leeuwen Health Hats.

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Kathleen Noonan’s quest to build bridges between communities & researchers with long-term relationships & respect for experience & expertise, just like juries.

Summary

Kathleen Noonan, the CEO, catalyzed the transformation of the Camden Coalition into a national platform for complex care. She focused on capacity building, bridging healthcare research with community organizations, and emphasizing the power of diverse partnerships. Noonan is a staunch advocate for community-driven healthcare, pushing institutions to incorporate local insights and foster long-term relationships that shape better research and policy outcomes.

Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below.

Two five-minute clips on YouTube.

Contents

Table of Contents

Toggle Episode + - Proem - Podcast intro - The fragility of health - Journey to healthcare advocacy - Insights from the legal and corporate worlds - Transition to Children’s Policy and Healthcare - First encounter with Camden Coalition - The impact of diversity at conferences - Meeting of the minds over community – research interfaces - An outsider co-directing a Research Center - Implementation, a different animal altogether - Who asks the research questions? - Partnering in the community - Earning the right to speak - Full of myself - Call to action - Punching above our weight class - From a local to a national organization - Complex care center - Community Nursing in 1976 – Walking Inner City route. - Capacity to partner - Long-term relationships, lean into expertise. - Mediation - Messy and local - Community participation in research – capacity building - Start with the research questions asked - Long-term relationships informed consumers and researchers - Consider juries as an effective, diverse set of minds - Expertise versus credentials - Reflection - Podcast Outro - Please comment and ask questions: Episode*ProemIn 2020, early in the COVID pandemic, I joined with several colleagues asking the questions:

How can the research industry help laypeople and communities find evidence-based guidance on how to live safely? Guidance that answers their questions when needed? Guidance that feels familiar and helpful. Guidance they trust. How can we be inclusive of our communities’ awesome diversity? See the podcast episode here.

We spent several years exploring those questions, informing my passion for community-research partnerships. I highlight such partnerships as often as possible in my podcast. One of my primary advocacy goals is to promote research that answers questions the public and communities ask.

My guest today, Kathleen Noonan, is CEO of the Camden Coalition, a multidisciplinary, community-based nonprofit working to improve care for people with complex health and social needs in Camden, across New Jersey, and nationwide. They develop and test care management models and redesign systems in partnership with consumers, community members, health systems, community-based organizations, government agencies, payers, and more to achieve person-centered, equitable care.

The fragility of healthHealth Hats: Kathleen, thank you so much for joining us. I’ve been looking forward to this. When did you first realize health was fragile?

Kathleen Noonan: That’s a great question. There are so many different answers to that. At some point as a kid, you realize that your parents aren’t just older than you, but older adults don’t stay around. When I was a kid, there was a girl on my block who passed away from pneumonia. It was an early developmental moment. But then, when did you realize that health is fragile because the healthcare system is so fragmented? It is another whole thing. When did I realize that we make our health more fragile because of the system we’ve built?

Journey to healthcare advocacyHealth Hats: Tell us about the Camden Coalition and your path to becoming CEO of the Camden Coalition.

Kathleen Noonan: I didn’t expect to find myself in healthcare as a 20-year-old or even a 30-year-old. I started out doing children’s advocacy work after college. I was a lobbyist for a children’s advocacy organization in New York City and greatly cared about economic benefits. Some might call it economic justice now, but it was things like earned income tax credits and better wages back then. Those were not the issues I worked on. You get what you get In the children’s advocacy organization. I worked on early childhood and issues of the crack and AIDS epidemic in New York City. I learned much about government and governance, state and local roles, and the federal government’s roles.

Insights from the legal and corporate worldsKathleen Noonan: I went to law school and paid off my debt by working as a corporate lawyer, which was not a terrible experience. I always tell people that one of the great things about the lawyers I worked with was that they were open to two sides of a story. And I sometimes find that many people are not open to two sides, even in my peer groups.

Health Hats: If not 10.

Kathleen Noonan: Exactly. You’re so right about that. That is part of our issue. I love that these lawyers were very open to the fact that I was there to pay off my debts and would go and do something else, which I did.

Transition to Children’s Policy and HealthcareImage by Tim Mossholder on Unsplash

Kathleen Noonan: Next, I engaged in many children’s policy work – child welfare, mental health, and juvenile justice. When I landed at the Children’s Hospital in Philadelphia (CHOP), I wondered what I was doing there. Then I spent ten years learning about healthcare and learned, oh my Lord, this system is very broken.

First encounter with Camden CoalitionHealth Hats: My first experience with the Camden Coalition was at last year’s annual conference. Our mutual friend, Janice Tufte, encouraged me to participate for five years, and I just kept blowing her off. I was involved in so much and didn’t need anything else on my plate. Then Janice called me and said the conference will be in Boston this year. There’s a beehive that sounds right up your alley, so I went. It was terrific.

The impact of diversity at conferencesImage by conference attendee

Health Hats: I was in awe of that. What was there? 600, 650 attendees. This was not a small conference. The attendees were young, and I pegged the average age to be 35. I made that up, but it wasn’t 60 like many conferences, and it wasn’t 12. It was a diverse audience—visibly diverse (skin color and mobility)—some newbies their employers sponsored to learn more and veterans. Veterans meant people with around ten years of experience in their organization – deep and narrow expertise, whether the unhoused or victims of violence or transportation. They were excited about what they could accomplish. I was fascinated.

Meeting of the minds over community – research interfacesHealth Hats: When we spoke recently, we found commonality in the community-research interface. The community service business and the research industrial complex have different skills. I’m in the PCORI (Patient-Centered Outcomes Institute) world, where people are committed to investing in community research interfaces. I’m now wondering about your perspective and experience in the service, advocacy, and lobbying world with the Camden Coalition. What’s your experience?

An outsider co-directing a Research CenterImage of David Rubin, MD from https://www.research.chop.edu/people/david-rubin

Kathleen Noonan: I went to the Children’s Hospital of Philadelphia (CHOP) to be the co-director of a research center as a lawyer and policy person, not a researcher. I came in as an outsider with an outsider’s perspective. My co-director, a pediatrician researcher, David Rubin, just left CHOP to attend the University of California. He was a researcher working on issues related to under-resourced kids and families. He was frustrated that the research that he was doing wasn’t doing a damn bit of good and was willing to say that out loud, which is something that a lot of researchers aren’t willing to do. So, kudos to him.

Health Hats: He did the research, and he had promising findings.

Implementation, a different animal altogetherKathleen Noonan: Right. The results never hit the front line in policy or program changes at the state, local, or federal government level and weren’t influential in his system. If you are at a children’s hospital researching kids in the child welfare system or the public school system in a place like Philadelphia, your research is not at the top of your mind.

Shout out to Dave Rubin again. Dave, you can thank me when I see you. He was not aggrieved but asked what we could do differently. What can I do with the levers I do have? To CHOP’s credit, they funded us to start a research center. They allowed us to use those funds to think about communication and policy differently so that we could use influence levers differently. I learned a lot about research. To answer your earlier question, I learned how long it took and how siloed it was from research to policy and vice versa.

Who asks the research questions?Image by Rohit Farmer on Unsplash

Kathleen Noonan: The questions researchers wanted to answer were not necessarily those that policymakers, community members, or parents wanted answered. It was essential to spend time thinking about those things together. We also had to spend more time talking to policymakers and programs to do relevant research.

Partnering in the communityKathleen Noonan: More recently, Policy Lab has done a great job partnering with community organizations. But we had to get outside the hospital. We would not expect people to come to us if we wanted to do this work. We had to go to them.

Health Hats: You had to identify community organizations that were potential partners and go there.

Kathleen Noonan: Yes. Earlier in Policy Lab’s history – history because it just had its 15th anniversary – we focused on program and policy levers. I started to partner with organizations and community organizations. They have a more robust program with an earlier goal: community partnership.

Health Hats: About policy or with legislators, council people, and another provider?

Kathleen Noonan: Administrators, other provider organizations. When we received funding for a program, we looked at a new way to treat children and adults with acting-out issues and adults with anger management issues. They need a little help to live together better. We said we’re not going to do this at CHOP. We will find community-based organizations that want to provide this service and do the project at their site, not at CHOP. But go out to community-based organizations and find them to do the programs with. So, we started that way.

Earning the right to speakAt Policy Lab, resourced by the Children’s Hospital of Philadelphia, had communications staff and policy team members who were team members with the researchers. Researchers in a hospital are often clinicians, too. A person working on the research methods might be skilled at facilitation, communications, and policy. They are the ones who are going to go out and meet with community partners. Both come to the team with their expertise. I remember a staff person like this attending a community meeting, and we hadn’t been to these community meetings in West Philadelphia in a long

Image from the Noun Project

time. And she asked me what I thought she should say at the meeting or what do should she do. I said we haven’t earned the right to speak in these meetings yet. We’re not going to say anything. Please introduce yourself, but I don’t think we have earned the right to say anything. Why don’t we go to some meetings and listen to what they say and think about what we have to say in a few months? I think you also have to go in with that attitude.

Full of myselfHealth Hats: It took my whole career to learn that. It’s a side effect of being full of yourself. Yes, I have strong arrogance muscles.

Kathleen Noonan: I get you. It’s not bad. You must learn to temper it and say, I’m sorry when there’s been too much. I get it.

Punching above our weight classImage from Openart.ai

Health Hats: You’re at the Camden Coalition, which differs significantly from CHOP.

Kathleen Noonan: Yes. I love it. We’re about 80 people. We are small but mighty, and we punch above our weight class. I spent my last two and a half years at CHOP in the C-suite and learned much about hospitals, how they operate, and what they can do well. They certainly can do many things well. Many kids and families are getting the care they need, but I also had a good sense of what they didn’t do well and what they needed community partners for. The Camden Coalition provided this opportunity to go on into the community-based side of it and say, okay, what? It also allowed me to work with a partnership, a coalition of hospitals, community-based organizations, and community residents. I have four of my trustees from my community advisory committee. I have another trustee who’s a consumer advocate. There’s just a coming together of a diverse group, and that was a different experience than I had at CHOP.

From a local to a national organizationHealth Hats: The Camden Coalition is a local and national organization.

Kathleen Noonan: We started as a local organization because Jeff Brenner, our founder, was a physician who, very much like Dave Rubin, was frustrated that his work wasn’t doing a damn bit of good. That seems to be the Theme. I guess the next job I’ll get will be a doctor who comes to me and says, I feel like my work isn’t doing much good. Jeff Brenner, within the Cooper Medical System, created this model of the nurse, the social worker, and the community health worker leaving the hospital, right? That’s important – seeing clients where they were, as well as the most complex clients, with medical and social complexity. So, we did that, and we were fortunate because I know all too well that thousands of community-based organizations, such as the Camden Coalition, are doing incredible work. The fact that Atul Gawande singled us out in a New Yorker article is luck to some extent. I believe that we hold that with a lot of humility here. It allowed us to have a national point of view, which is not typical for a community-based organization. And I say again, these community-based organizations have little power, so we must use it wisely, be generous, and share it.

Complex care centerThrough that, we started talking to other groups around the country doing the kinds of things we were doing. They were often ahead of us. We developed the idea of bringing people together in a sort of home for the field of complex care with the Robert Wood Johnson Foundation and AARP.

We built this national center and the conference you attended, and we wanted it to be different from the academic medical conferences I attended for ten years. I wanted it to be a little bit of that, but I didn’t want it to be all. I wanted it to be a little bit of the children’s advocacy convenings I went to in New York City, which was, sometimes, with Act Up in the room because it was the time of the AIDS crisis. Sometimes, family daycare providers filled the room. We spent much time considering the diversity of voices. You saw that in Boston. We continue to get support from the Robert Wood Johnson Foundation to have a national center here, too. Push out information about the field of complex care. We teach and train. We just launched a new certificate on complex care, which we hope will allow other providers to bring the diverse teams working on complex care into their program or institution, or even across programs, and for people to learn and learn together and skill up together. Watch a video about the certificate here or in the episode show notes.

Community Nursing in 1976 – Walking Inner City route.Article from the Holyoke Transcript-Telegram Aug 19,1977

Health Hats: Oh, I wish I had known this a long time ago. My first professional nursing job was 1976 as the first male public health nurse in Western Massachusetts. I got hired by the Holyoke Visiting Nurses Association because they were dying to hire a guy. I was a brand-new nurse. Usually, you get into home care after years in hospital nursing. I was fortunate that that was my first professional job. I ended up quickly having an inner-city walking route, and part of that was because the women didn’t want to be in the inner city. I didn’t want to drive all the time, so I said, instead of paying me gas money, buy me shoes and a backpack, and I’ll do the inner city. It was a great way to start a profession because I was out there, and it was, even all these walk-ups and people lived in some oh man, dank and dark and, and having, whether it was diabetes or paralysis and bedsores from gunshot wounds. I had good thoughts, but they were brand new, and I mostly didn’t know. I can only come to your community once a week to help you. But it would be best if you had something every day. That stuff was not organized. I operated by the seat of my pants.

Capacity to partnerHealth Hats: But this business is about the capacity to partner. I want to be more involved with the communities and have co-PIs from the community. That’s not them. That’s not what they know. We want them to disseminate their results to communities and help implement them. Where’s the money going to come from?

What happens when the funding cycle ends? The problem lasts forever. When you have a problem, you must go to the people on the front line because when I was a consultant, it was a dirty secret. People would pay you to come to solve some problem. And how do you solve it? You talk to the people who work there, and they know. They’ll listen to me for a few minutes since they’re paying me a lot. I probably didn’t have an original thought; I was just a good mouthpiece. How do you balance that tension?

Long-term relationships, lean into expertise.Image from OpenArt

Kathleen Noonan: We see a lot of requests about community participation, which seems a little unrealistic to us. I’ll put it that way. The idea is that some people are just waiting to be asked to be a co-PI, or are just waiting to learn about methods, or even signing off on your methods, which is infinitesimal. Are they right? Is it a rubber stamp? Ask them to sign off on whether they think the question is excellent, like where they have expertise. Please give them the sign-off on that. Is that as a co-PI? I don’t know. Is that just calling someone a co-director? But they’re not. You’re somebody who is the director. It just feels like it can feel not credible. We don’t want to tokenize people in any way and worry about just our own what we are not seeing or knowing about how we’re operating. But we believe in it. Longer-term relationships with consumer advocates and community members, so you know them and what they’re interested in influencing. Why are they bringing in? If they’re bringing their story, why are they bringing their story? Why are they willing to share their story if they are to advance a policy issue or a program issue? And what policy and program issues do they want to advance to change? And then what’s our responsibility to work with them to think about the change and whether they sign off on it?

MediationOur community advisory committee is a group of people, some of whom I’ve known for years. I’ve known since I started at the Coalition six years ago. When I came to the Coalition, the community advisory committee was very upset with the Coalition about something. I trained as a mediator, so I had mediation to do that. Just recently, I had to do mediation within the community advisory committee because we have people who have very different points of view about drug use. We have someone who believes and several people who believe that you’re not sober if you are not using heroin but you’re smoking weed. And we have some people who believe that they’re sober and they can call themselves clean if they are not shooting up but smoking weed. When I hear researchers talk about the things I want to do, I want to be able to train myself. You must have some training or somebody on your team who understands the life conflicts that may arise when you ask people in this field to work with you on a substance.

Messy and localHealth Hats: Local work is challenging, messy, and local.

Kathleen Noonan: Absolutely. That’s why I love local work. It’s why I started in children’s advocacy locally, and I love local. It works, but it is very messy.

Community participation in research – capacity buildingKathleen Noonan: You figured out how to have community-based organizations participate in research. I’ll tell you, here’s an example for research funders to think about. We just saw a call for proposals for RCTs (Randomized Control Trials). We want to do another, maybe three or four years from now. We’ve done one RTC. Do you want to do one again? We had lots of intramural money when I was at the Children’s Hospital of Philadelphia. Researchers could use the money as a rainy-day fund or a cookie jar. Researchers could request funds from those sources to prepare to apply for a research grant. We don’t have it at all. We want to send something to this request for proposals for randomized control trial funds and say we need them to prepare for a randomized control trial. That’s what you would have to do with community-based organizations, which is, say, we’re going to fund them for two to three years to get ready to do a project or to get ready to partner.

Health Hats: I can weigh how big that PCORI capacity-building bucket is. It’s a very effective bucket. Before becoming a board member, I worked on a project funded for building capacity in Boston. The paid facilitators were good. They worked hard to build a partnership with researchers and other collaborators. I was fascinated to see it from that perspective. I agree with you. As a PCORI Merit Reviewer, I observed that academic Applications were $5 less than the max. When communities led funding applications, the question was whether they could afford to do it on that budget. Because it didn’t seem like they were asking for enough – a fascinating dilemma. Could the funds go to people who aren’t going to ask for every dollar? Then, you can do more projects. On the other hand, do they have the expertise? They don’t. They’re not paying the overhead; academics have a significant overhead, but that’s not the issue.

Kathleen Noonan: I think it’s interesting, though. Interestingly, the Affordable Care Act and other healthcare mechanisms indeed hold. Payers’ health insurance companies have a 20% overhead, but we allow universities to take 60%, so there is a disparity. It’s tough to understand.

Start with the research questions askedImage by Camylla Battani on Unsplash

Health Hats: So, if you were thinking out of this conversation about this partnering between researchers and communities, what do you think are the most critical points in your experience? What should our listeners be thinking about?

Kathleen Noonan: Researchers usually use questions they’re interested in as a starting point, but if you want to do community-informed research, you must go out and talk to people and ask if this descriptive research is fascinating. Or is this a question you know more people than I and peer-reviewed journals would be interested in?

Long-term relationships informed consumers and researchersKathleen Noonan: I think that’s important. If researchers haven’t asked it, then justify why and have enough of a relationship with them to bring it to them in earnest, and they come around and decide with you. That’s a good question. You’ve already done a great project right there. I think that’s important. I think it’s essential for researchers to have long-term relationships with Consumer Advocates. These are not one-time relationships but relationships where they become educated consumers.

Consider juries as an effective, diverse set of mindsImage of jury from www.rtbf.be

Kathleen Noonan: We trust, in our country, that a jury can come together without law degrees, listen to much information, and come to a reasonable conclusion. I worked in the court for two years as a law clerk, and I never found the jury to come back with a decision I disagreed with. You can bring a diverse set of minds together. Like a lot of them, even my board has consumer advocates. They don’t know everything but provide some accountability for what we do together. Suppose you commit to some consumer advocates over time. In that case, they will learn a bit about what you’re doing and become more comfortable and experienced in questioning what you’re doing and contributing to it. Think of them as a well-rounded jury. They tell you whether this is a good idea or not. That’s how we try to think about it in the longer term. It’s essential to build longer-term relationships. I do not expect to have this study; I will go out and find somebody.

Expertise versus credentialsHealth Hats: What is the consumer’s point of view?

Kathleen Noonan: I don’t want to speak from that point of view per se. I wish I had one of my community advisors here with me. But I will say this: our community advisory committee was vital when we worked on Covid and were all in Covid in Camden. And we created a community ambassador program. And we did that actually because of the states. The state said they would make contact tracing jobs available to people regardless of educational status. Then, they gave the contract to our big state university, which required a BA degree. A couple of our community advisory committee members were so disappointed because they would have applied. So, we said, do not worry about it. We are creating a new position for you. We created this ambassador position, and they were paid to knock door to door and go to different places.

However, one of the things that I learned was that we shared the research studies with them. We talked about the research with them. They needed to be as educated as possible. So that they felt perfect about saying to people like, no, I looked at the research study. There were African Americans in the study, right? They understood some of the concerns and could say to people with a lot of credibility that’s not true. So, we must give community members more credit than they might sometimes get.

Health Hats: Thank you.

Kathleen Noonan: Thank you.

ReflectionThis conversation hit many of my priorities. Of course, I value promoting capacity for community-research partnerships through long-term relationships. I also prize serving emerging advocates where they hang out, and respecting expertise and experience as co-equal to credentials. What a hoot to dig up the 1977 article about my naïve, prescient, 25-year-old self.

I’m going to steal Kathleen’s jury metaphor. A jury can come together without law degrees, listen to much information, and come to a reasonable conclusion. You bring a diverse set of minds together. They don’t know everything, but together, they help and provide some accountability for our actions.

I buy my hats at Salmagundi Boston. And my coffee from the Jennifer Stone Collective. Links in the show notes. I’m grateful to you who have the critical roles as listeners, readers, and watchers. Subscribe and contribute. If you like it, share it. See you around the block.

Please comment and ask questions:* at the comment section at the bottom of the show notes * on LinkedIn * via email * YouTube channel * DM on Instagram, Twitter, TikTok to @healthhats

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk
Leon van Leeuwen: article-grade transcript editing
Oscar van Leeuwen: video editing
Julia Higgins: Digit marketing therapy
Steve Heatherington: Help Desk and podcast production counseling
Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection, including Moe’s Blues for Proem and Reflection and Bill Evan’s Time Remembered for on-mic clips.

Credits

I buy my hats at Salmagundi Boston. And my coffee from the Jennifer Stone Collective. I get my T-shirts at Mahogany Mommies. As mentioned in the podcast: drink water, love hard, fight racism

Inspired by and Grateful to

Rodney Elliot, Eric Kettering, Nakela Cook, Lisa Stewart, Kristin Carmen, Janice Tufte, Alexis Snyder

Links and references

Camden Coalition

Annual Conference

Atul Gawande’s New Yorker article

Jeff Brenner

David Rubin

CHOP Children’s Hospital of Philadelphia Policy Lab

Act Up

Robert Wood Johnson Foundation

Janice Tufte Hassanah Consulting

PCORI (Patient-Centered Outcomes Institute)

PCORI Merit Reviewer,

1977 article about Danny van Leeuwen first male public health nurse in W Mass

Related episodes from Health Hats

Safe Living in a Pandemic – Help!?

Bonus Episode 2: Apps, Beehives, and Bobbleheads

PATIENTS Program: Building Community Research Partnerships

Creative Commons Licensing

CC BY-NC-SA

BY: credit must be given to the creator. NC: Only noncommercial uses of the work are permitted.

SA: Adaptations must be shared under the same terms.

Please let me know. danny@health-hats.com. Material on this site created by others is theirs, and use follows their guidelines.

Disclaimer

The post Camden Coalition. The Jury’s In. Long-term Partnerships Rule first appeared on Danny van Leeuwen Health Hats.

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Exploring the journey of coffee from farm to cup with expert Jen Stone, delving into flavors, cupping, & the ethics of coffee production. Music & Health, too

Full 36-min episode on YouTube

Two five-minute clips on YouTube.

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Contents

Table of Contents

Toggle Episode + - Proem - Podcast intro - Introducing Jennifer Stone - Health is Fragile - Profound Knowledge of Coffee or Caffeine - Caffeine Delivery System - Coffee Cupper - Coffee Flavor Notes - Call to action - Coffee Flavor Notes in My Cuppa - Different tastes and circumstances - Fermentation - Transparency - Social Justice in Coffee Making - My Palette - Slow down and taste - You’ve ruined me a bit - Equipment - Reflection - Podcast Outro - Please comment and ask questions: Episode*ProemWhen I take two minutes to bitch about the annoyances of having Multiple Sclerosis, I insist that I can’t be repetitive. I must whine and complain with new words. How many words do we have for describing symptoms of pain? Not enough. Sharp, dull, achy, daily, itchy radiating, nauseating, disabling.

Greenland has 46 words for snow and no wonder. Profound knowledge about something leads to more words being needed and created. The better we can describe ourselves to ourselves, the deeper we understand our nuances. More accurate and specific descriptions lead to better communication of our symptoms, moods, and circumstances with our health team. Then, we can make informed decisions, plan, and adjust together.

Believe it or not, this rant about words leads us to today’s episode on coffee. Welcome to my new hat – coffee snob. Our guest is Jennifer Stone, my colleague in my Thursday morning mastermind group for solo entrepreneurs. Jen is a Sommelier of Coffee and the host of the Coffee Explorer Podcast, a Quality Lecturer, and a Licensed Q Grader by the Coffee Quality Institute. She is internationally recognized as an Expert Coffee Taster and Judge for the Cup of Excellence. She has expertise in finding, sourcing, and sharing remarkable coffees from quality global producers. Over her career, she’s opened multiple cafes and created several direct-to-consumer and business-to-business specialty coffee brands. She provided expertise to others in these areas and is always excited to share the best ways to brew coffee with the market. Jen Stone has opened my eyes in unexpected ways. Drink up!

Introducing Jennifer StoneHealth Hats: Jen, you’ve opened many senses for me. We met over the business. We are working together on our business; you know how that’s growing and managing. But I’ve learned from you about coffee, not just coffee.

It’s about the sense of taste because it’s not just, you know, while I’m learning to appreciate fine coffee. I was concentrating more on what was happening in my mouth. I’m finding it with food, chocolate, and alcohol, and just more awareness.

Health is FragileHealth Hats: When did you first realize health was fragile?

Jennifer Stone: This is such an interesting question. I love that you asked about the word health as fragile and not life as fragile. When a loved one passes, or you have a near-death experience, that speaks about life, but health, specifically, is a little vaguer. About a year and a half ago, I could say I loved to run. I’m not fast, but I love to jog and exercise. One of my knee joints began to wear down. I have some arthritis in one of my knees, and it felt like this bone-on-bone thing. It was disabling. After a few days of it not going away, no matter how much ibuprofen I took, I realized I needed my knee to strengthen. I don’t want to focus on my knee. I had a dog who needed to run outside quickly occasionally. And I need to be able to take care of my family and go to the grocery. My job requires me to go through airports, make presentations, and stand and walk. It’s a privileged framework, but I have always been ridiculously healthy. Thank God I have had my health, so I’m sensitive to anything glitchy. It was frustrating, and I realized that that little thing could impact my life, much less something larger.

Profound Knowledge of Coffee or CaffeineHealth Hats: So, how does coffee fit into that? There are so many levels. I describe you as a coffee maven, and I don’t know what that means, but I think you’re a coffee expert. Maven sounds cooler. It impresses me that one of the things that I know about health is that a profound understanding of something is helpful. The more you understand, like you’re talking about your knee and you’re running, the more you understand what’s happening to your knee, the more you can manage your overall health.

You’re a coffee expert. You understand the coffee process profoundly. So, is there a health piece to that? The only thing I ever hear about coffee and health is about caffeine. Dark coffee doesn’t have any caffeine, but decaffeinated coffee has more. Does caffeine make any difference? Is that part of your expertise?

Jennifer Stone: I am highly aware of that because, as with any industry, health or culinary, it’s very whimsical. You’re only as informed as the following article about coffee, health, cheese, or butter or how much walking you should do versus how much weight you should do. I am aware of it. I have some thoughts about coffee and health: The net-net is what we must distinguish. Are we talking about caffeine or coffee?

Health Hats: Okay, go for it.

Caffeine Delivery SystemJennifer Stone: Coffee is a very effective caffeine delivery system. Everybody probably has a loose awareness of their caffeine or coffee limits. We can push those occasionally, but we keep everything in moderation. Technically, coffee is a plant. Coffee is a fruit, a seed of a fruit. It’s full of antioxidants. I’m not going to list them. It’s full of things that are good for you. Because we’re sipping it slowly over maybe 20, 30-minute the delivery system is effective, especially with drip coffee. I say two things about that. One is it’s a good cup of coffee – you and I have talked about this – that moment happens, time slowing. I love that you used it, and I’ve written it down: that sense of taste. Can it transmute to a sense of place and that moment of drinking or brewing a nice cup of coffee?

Be it caffeinated, decaffeinated, or otherwise. Good coffee brewed well is the starting point for that experience. Coffee has also become a delivery system for additives like cream and sugar. That’s a choice. Is this the way I’m going to have sugar today? Milk? Now, we’re adding unflavored collagen to coffee.

Health Hats: Wait a minute. Say that again when you say collagen. That caught my attention.

Jennifer Stone: So, there are, for example, vital proteins. This collagen has peptides that are highly dissolvable. It doesn’t taste like anything.

Health Hats: Oh. You were talking about additives. Okay. Thank you.

Jennifer Stone: People add a range of things to their coffee that may or may not be beneficial for their health.

Coffee CupperHealth Hats: The whole process is so interesting. You tend to work with specific growers, roasters, and vendors. How do you choose them? You’re not looking at instant coffee. You do all this work for us. What’s that about?

Jennifer Stone: That is such a great question. Over the years, I’ve developed my expertise and my experience in coffee. People tell me I am an excellent cupper, which means I’m a good person who tastes coffee and assesses coffee quality. I have a designation by the Coffee Quality Institute as a quality grader. And so, a framework for tasting coffee is an international language, a common language for assessing the coffee quality that a small group can use. So, I use that point system framework. Does this coffee score high on acidity, brightness, flavor, aftertaste, or other things? We want to eliminate things with negative attributes, like whether they are sour or taste like a band-aid.

Health Hats: Or burnt.

Figure 1: From https://millilitre.my/good-reads/basic-coffee-tasting-wheel-and-how-to/

Coffee Flavor NotesJennifer Stone: I’m looking for harmonious flavor and complexity when thinking about coffee. I love it when I can taste a chocolate note or a milk chocolate note, specifically maybe pumpkin spice or a baking spice in the coffee; that is when I can detect a few different flavor notes. I think you could detect anyone who enjoys drinking coffee, and then I think it is a coffee that most people will want to taste and try. So that’s what I’m looking for. And then with my, you know, years of network and relationships and new things happening in coffee all the time, you know, I look. I seek those coffees out from producers. I find out what they’re doing at the farm, too. To make their coffees taste so good, and that’s research. You must kiss a lot of frogs.

Coffee Flavor Notes in My CuppaHealth Hats: I’ve got my cuppa and the label, and I’m thinking about what this says here. Taste of watermelon candy. Tropical tea, strawberry anaerobic fermentation. Natural process.

Jennifer Stone: Yes.

Health Hats: Relevant Reserve Coffee, Columbia, Adrian Lasso, pink Bourbon. It’s amazing.

Jennifer Stone: Do you love it?

Health Hats: I do. It’s intriguing, and it’s not something that I’m going to drink routinely. I’m drinking it now because I knew I would be on the phone with you. It’s a coffee that makes you want to think, so much think as taste. What is this? Never read watermelon candy, tropical tea, or strawberry. I’m always amazed at how that goes. Where do those descriptions come from?

Jennifer Stone: We have the advantage of being in the lovely vacuum of the cupping table, tasting that coffee in a tranquil, controlled atmosphere with our worksheets in front of us. We are specifically looking to find those flavors of the acids, the fruits. We seek out fruits. And we are looking for the level of body or the mouth fill. So again, in that vacuum, we can say words like watermelon and candy. The notes I had hit out of the park with those sweet, fruity notes; I found things like peppercorn, and I found it to be very buttery in terms of texture. And so, with wine tasting, you must train your mind to think about these specific notes, but part of the adventure.

Health Hats: It’s like music.

Jennifer Stone: Yes, it is. This coffee is not something you want to drink daily. It’s not something I even want to drink every day, but I love that so much artwork went into producing this coffee by Adrian Lasso. It was a very controlled experiment with a lot he had to discard because of the controlled fermentation you must do to make coffee taste this good and sweet. Otherwise, it could taste not good. It’s an art form.

Different tastes and circumstancesI don’t want every coffee to be like this: It’s not a gateway coffee. I gave some to my mother, who doesn’t drink much coffee. She doesn’t drink caffeine. She didn’t like it. We have a friend in common, Seth Godin. I sent him a similar coffee. he roasts coffee., I gave him some green coffee that had a similar process, and he roasted it and didn’t love it at all. Even the smell is very peaty. I think that’s okay. It opened my eyes because even though it’s the highest quality coffee, and maybe it scores like a 98, it doesn’t mean you’ll like it even if someone says it’s the best.

FermentationHealth Hats: What does fermentation have to do with making coffee? This isn’t like liquor.

Jennifer Stone: Some crossovers are happening to make the coffee taste a certain way. As a fruit, coffee cherries, that’s what we call them, look like cranberries, except they’ve got these two seeds in the middle that face each other like this. is where it becomes. There are various ways to remove that cherry from those seeds and allow fermentation with some pulp on the seed. That imparts those pulpy flavors to the bean significantly. People even add cinnamon when the coffee cherry must be fermented or washed off. That results in flavored coffee beans versus flavoring agents added after the roasters roast the coffee.

Health Hats: Oh, so people add stuff afterward.

Jennifer Stone: Yeah, and if you love it, you love it. I don’t judge. It’s a fantastic way to have a high-quality coffee, but if you enjoy the taste of it, you know, at Christmas, then.

TransparencyHealth Hats: Looking at a label, how would you know whether the watermelon, whatever, came from the bean itself or somebody added a drop of watermelon flavor to it?

Jennifer Stone: That is a good question. Today’s Roasters have become more transparent about saying we did this at the farm, and it tastes like watermelon. High-quality roasters will not use flavoring agents because they are harsh, like polypropylene glycol, just powders and things you would add after roasting, creating Snickerdoodle.

A view of a field of coffee plants

Social Justice in Coffee MakingFigure 4: Image from https://www.torchcoffee.asia/resources

Health Hats: One of the things I found interesting, especially after I went to a Costa Rican coffee farm in Alajuela. I came back full of questions. With luxury goods, it’s usually the people at the beginning who get screwed in the process. Something is high-end, and there’s a lot of charge, and it’s like people who didn’t do the work are making the money. And I remember you talking a little about how you go around, and when you travel and go to farms, you’re selective about how you choose the farms you want to work with. So, is there a social justice piece to this?

Jennifer Stone: That’s as fine a word as any. Coffee is a third-world product, generally grown in a band near the equator, encompassing countries like Honduras and El Salvador, which are struggling. But also Brazil, Columbia, Indonesia, and Sumatra. And then Africa, maybe Kenya, Ethiopia, and Tanzania, are where you’re producing this penny for a pound of product that has been highly leveraged to stay down like that. When I work with individual farmers who have had some opportunity to get coffee on the map, it could be through different programs, like a Cup of Excellence, which holds auctions in countries anybody could submit. People like me come in, people in the country, come in and taste their coffees and recognize their potential or how good they already are. It allows producers and importers to come in and pay more for those coffees because they want them more.

Health Hats: Coffee isn’t cheap. You go to Starbucks, and I have no idea what’s happened to this costly cup of coffee. But I’ve built a relationship with you where you’re curating the coffee for me, and I sense that you’re paying attention to the whole process.

I’m interested in what you pay attention to with the farmers. The beginning is growing the bean, so what are you looking for? Because your coffee is expensive, but it’s not outrageous by any means. There is way more expensive coffee out there. You sent me that Rwanda coffee, which was a little more expensive. It was worth it. Is the farmer getting more of that?

Jennifer Stone: At the core, I have discovered a correlation between higher quality, better tasting, and hitting all top end of the marks on the cupping sheet. Those farmers tend to take better care of their farms and those who work there; it just goes hand in hand. The farms and the farmers often provide housing. Often, coffee pickers are transient, like in the US, and they’ll move from farm to farm during harvest. But they can receive housing, school, and healthcare, and different aspects of their life are improved because they are in coffee. So that farmer must charge. Moreover, they can charge for their beans if the market is depressed. But we’ve come into an era where we can pay as much as needed for that farmer to have that coffee again next year, and we’re starting to think about sustainability.

Health Hats: Right. Being able to predict your market.

Jennifer Stone: Yeah. Year after year.

My PaletteHealth Hats: I’ve learned much from you in my exploration of coffee over the past few years. I know enough to be dangerous now. I already knew what aftertaste was; how long do you taste something? I have this image in the mind of my tongue and palette, the entire tongue, and the roof of my mouth. It’s been a while since I had a sip, and I can still taste it, mainly on the roof of my mouth and a little bit on the middle of my tongue. I taste the rare coffee on the back of my tongue. I find that interesting when I do, just because it’s different. Then there are coffees you’ve given me that are burst, like pow. You know, as opposed to Hmm.

Jennifer Stone: Like music,

Health Hats: Like cheese, I’m not much of a wine drinker, but I like whiskey. I don’t often like to slow down and taste.

Slow down and tasteFigure 5: Selfie of Danny and JoJo on Porch

Health Hats: I have been drinking more coffee. My dog likes to sit out on the porch in the morning and sit on my lap, and we watch whatever is going on with a cup of coffee. I’m sitting there with the dog. I can take the time.

Jennifer Stone: Yes.

Health Hats: I don’t like multitasking with my coffee.

Jennifer Stone: Yes. I love that. It is such an exciting idea to experience the coffee aftertaste, finishing in geophysics physiologically. Where in your mouth are you tasting it versus what you’re tasting? Is it sour or bitter or chocolatey or sweet? I think that you know, that takes that sensory experience too. Another level that I don’t hear very often. I think that’s very insightful thinking of it that way. That’s quite interesting.

You’ve ruined me a bitHealth Hats: I enjoy the experience of understanding how it’s grown, about the workers, and less exploitation of the third world. I don’t like feeling like I’m taking advantage of people in what I consume. I like stopping for five seconds and tasting this cup of coffee, tasting this mouthful of coffee. It’s like a sigh. Right. I’m just going to sit here for a second. I don’t have to think about what I must do next and whatever I’m puzzling over, but I can appreciate and relax with this taste. So, we could do this once a year. It’s such a journey. I can’t believe how much I feel like I know. In a way, you’ve ruined me, to tell you the truth. I can’t go to Starbucks anymore. It’s too strong. I can’t taste any notes.

I am more discerning when I’m away from home. I try to bring coffee with me because I love the routine of drinking coffee. Sometimes, I drink, and I’m disappointed. Like, oh my God, that was nothing. Or, oh my God, that was burnt. I can’t identify anything, and I get it; I’m so disappointed. Well, thank you for that.

EquipmentFigure 6:Timemore Nano Manual Coffee Grinder

Jennifer Stone: I do want to ask you one question. We spoke several months ago, and you were looking for a coffee grinder. I sent you all these links to try. Tell me again about your experience with the grinder that you purchased.

Health Hats: All right. I’ll put something about it in the show notes, but it’s small. I think metal, like cast iron, is a one-cup grinder that allows you to adjust the fine grind. And it’s made. The design of it is fantastic. I pay much attention to design and healthcare and am very attuned.

And it’s straightforward to crank it. I feel like it’ll last forever. The handle folds down; you put it away. It takes up a tiny gym. We have a tiny kitchen. It’s a small footprint. Before that, I used this electric grinder, which was like one grind. I remember talking to you about it when I was starting to.

Jennifer Stone: The blade grinder.

Health Hats: Yeah, it was a blade grind, an electric blade grinder.

Health Hats: Well, you pointed me to a company and a grinder, and yes, I picked something different than you suggested because it was smaller. A Timemore Nano Plus Manual Coffee Grinder

Jennifer Stone: You’re hand grinding your coffee like people do when they’re camping. You’re traveling. But I love that you shared with me that you now enjoy the experience of grinding coffee, even though it takes longer than 30 seconds.

Health Hats: No, it doesn’t take long – 30 seconds. It’s way better, and I could adjust the grind. I had to try a little. My style of trying stuff is to overshoot the mark and back up. Do you know what I mean? It was easy to do that. It holds whatever I set, and I don’t do anything now. I like how it is. It makes my experience of it. That’s what I feel like. It’s just the whole experience.

Jennifer Stone: Not only does fresh ground coffee taste better, which we always talk about, but it also enhances your hand grindings and coffee-drinking experience.

Health Hats: Thanks. This is great.

Jennifer Stone: Thank you.

ReflectionImage from DALL·E 2024-03-12 10.41.27 – A tapestry of coffee, notes, music

Coffee, notes, music – a logical progression. I’ve played music for the last 40 years. I’m just beginning to quiet my mind and let the music flow over me, not as background, but as hearing (tasting) notes, pitches, dynamics, location of sensation, emotion, individual instruments, parts, sections, coherence, and cacophony. I could go on. I love learning, be it music, podcasting, or coffee. I get high on the image of new pathways snaking across and around the Swiss cheese of my MS brain. Coffee, notes, music.

Podcast OutroI host, write, and produce Health Hats the Podcast with assistance from Kayla Nelson, Julia Higgins, and Leon and Oscar van Leeuwen. Music from Joey van Leeuwen. I play Bari Sax on some episodes alone or with the Lechuga Fresca Latin Band.

Please comment and ask questions:* at the comment section at the bottom of the show notes * on LinkedIn * via email * YouTube channel * DM on Instagram, Twitter, TikTok to @healthhats

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk
Leon van Leeuwen: article-grade transcript editing
Oscar van Leeuwen: video editing
Julia Higgins: Digit marketing therapy
Steve Heatherington: Help Desk and podcast production counseling
Joey van Leeuwen, Drummer, Composer, and Arranger provided the music on the intro, outro, proem, and reflection including Moe’s Blues for Proem and Reflection and Bill Evan’s Time Remembered for on-mic clips.

Credits

I buy my hats at Salmagundi Boston. And my coffee from the Jennifer Stone Collective. I get my T-shirts at Mahogany Mommies. As mentioned in the podcast: drink water, love hard, fight racism

Inspired by and Grateful to

Jeff Horner, Fred Guitierez, Ellen Bloom,

Links and references

Jennifer Stone (@jstonecollective) • Instagram photos and videos

LinkedIn Jennifer Stone | LinkedIn

www.jstonecollective.com, where you can find my podcast, Coffee Explorer

Bio:

Inspiring Coffee Drinkers to Become Coffee Tasters. From sourcing and roasting to brewing and training, I work with customers and coffee drinkers to improve their coffee skills and ultimately brew the most perfect cup imaginable.

I am a quality lecturer and licensed Q Grader by the Coffee Quality Institute. I am internationally recognized as an expert coffee taster and judge for the Cup of Excellence. I have expertise in finding, sourcing, and sharing remarkable coffees from quality global producers. Over my career, I’ve opened multiple cafes and created several specialty coffee brands, including Direct to Consumer and Business to Business. I have provided expertise to others in these areas and am always excited to share the best ways to brew coffee with the market.

Currently, I collaborate with other brands and businesses with a range of coffee education needs, operate a shop of the ultimate in coffee and accessories, and produce a podcast as a learning platform to share my expertise and passion for coffee. The podcast includes interviews with coffee experts and lovers, the journey of coffee and people, resources and insights, plus equipment recommendations and reviews. Let’s discuss coffee anytime!

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Creative Commons Licensing

CC BY-NC-SA

BY: credit must be given to the creator. NC: Only noncommercial uses of the work are permitted.

SA: Adaptations must be shared under the same terms.

Please let me know. danny@health-hats.com. Material on this site created by others is theirs, and use follows their guidelines.

Disclaimer

The post Coffee Insights: Flavor, Notes, Health, and Justice first appeared on Danny van Leeuwen Health Hats.

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Susannah Fox’s “Rebel Health” on the power of Seekers, Networkers, Solvers, & Champions in driving patient-led innovation & the communal fight against disease.

Full 36-min episode on YouTube

Two five-minute clips on YouTube.

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Contents

Table of Contents

Toggle Episode + - Proem - Podcast intro - Realizing the Fragility of Health - Transition from Research to Activism - The Role of Perception in Healthcare - A System Versus Community View of Healthcare Innovation - Hacking Healthcare and Startups - Motivation to Solve - Call to action - Seekers - Networkers - Solvers - Champions - Networker, Seeker, Solver, Champion - Networker, Champion, Solver - Persisting Boss - Leading by Helping the Helpers - Actors on the Stage of Innovation - Emergence of Champions - Serving Communities - Revolutionary Energy – Regina Holliday and Casey Quinlan - Draft Counseling – Working from the Inside - Champions Stoke Fires - Rebels in Health – You Are Not Alone - C-Suite and Government Meet Rebels - Step into Your Power - The Enemy is Disease - Reflection - Podcast Outro Episode*ProemRebel Health by Susannah Fox

As a student of advocacy and activism, I draw warmth from the heat of others’ passion, marvel at the diversity of origin stories, and burst with curiosity about what might come next. How did they start on this journey, and why do they persist? I’ve been a nurse for 50 years. One of the best things about nursing for me was the license to be nosy – for a brief time – a visit or a stay. This nosiness melds nicely as a podcaster for an episode. I often ask guests, “When did you realize health was fragile?” Another student of advocacy and activism is our guest, Susannah Fox. Susannah is a health and technology strategist. Her book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, has just been published by MIT Press. She is a former Chief Technology Officer for the U.S. Department of Health and Human Services, where she led an open data and innovation lab. She has served as the entrepreneur-in-residence at the Robert Wood Johnson Foundation, and she directed the health portfolio at the Pew Research Center’s Internet Project.

Health Hats: Susannah Fox, how are you? It’s so good to see you. I’ve been looking forward to this. You’ve been my idol for a long time. I first learned about you when you were at Pew Research Center, and I thought your perspective and research were so helpful.

Realizing the Fragility of HealthWhen did you first realize health was fragile?

Susannah Fox: Wow. The first time I realized that health was fragile was when my dad was a flatliner on the table at the hospital after his heart attack. He was in his fifties and someone who, to anyone who looked at him, would’ve thought he was a health nut. He went four miles three times a week. He was fit. He loved to hike. He was a mountain climber. And yet he had genetically high cholesterol and a hidden, blocked artery. So, they luckily were able to revive him, and he had open heart surgery and lived long enough to then get kidney cancer in his sixties and melanoma in his seventies.

My dad was my model for lifelong health and perseverance. I love this question because it explains how you learned that health is fragile. But then also what? What happened when you learned that health was fragile? For me, it was seeing my dad persevere to regain his health each time he had a setback.

Health Hats: That’s admirable.

Transition from Research to ActivismHealth Hats: You had these experiences and are now in activism. How did that path happen? How did you get where you are now?

Susannah Fox: I don’t think of myself as an activist. I think of myself as a researcher and a strategist who collects data, studies the landscape, and then tells the truth about what I see. I want people to enter a landscape with an understanding that if they build something on the frontier of healthcare and technology, they must build it on sound foundations.

They need to understand the truth of the situation. However, I evolved as a researcher when I started this work and met Tom Ferguson, my mentor when I was working at the Pew Research Center for Lee Rainie. We hired Tom as an advisor. I went to Tom to understand the future of healthcare and technology. He said you must spend time with patients. They are the hackers, rebels, and cowboys on the frontier, bending tools until they break.

I started spending time in online patient communities in 2001. Tom would have identified as an advocate and activist, often pulling me toward that. And I was, frankly, resisting and saying, no, I’m over here as a researcher. I don’t judge whether something is good or bad. I just tell people the way the data lies. Yet, after 14 years at the Pew Research Center, I went to Lee Rainey and the then-president of the Pew Research Center, Alan Murray, and said, I’ve written 50 papers about the internet and healthcare, and I think I know what should happen next. I have opinions about the megatrends that are changing healthcare. And they said that’s great. You can’t work here anymore because the Pew Research Center rightly holds it as a core value that their researchers don’t have an opinion about how things should go. I’ve maintained my sense of being a researcher where I follow the data, yet I also recognize that being a researcher is where I train my gaze. I think of myself as if I have a miner’s light on my head, and where I train my gaze to look is an editorial choice. By looking closely at patients, survivors, and caregivers, I know that I’m choosing to honor the work that they’re doing. In that sense, I’ve gotten pulled towards advocacy. But I don’t identify as an advocate.

The Role of Perception in HealthcareImage by Bradley-Pisney on Unsplash

Health Hats: It resonates with me when you say that. Because you’ve helped to inform my work, mostly in perception, like how people perceive. At Pew, you did a lot of surveys, and now you’re collecting hacks and experiences. Do you see yourself as a perception researcher?

Susannah Fox: The basis of my work was the telephone surveys we did at the Pew Research Center paired with my fieldwork, acting like an anthropologist going into these online patient communities.

After I left the Pew Research Center, I worked at the Robert Wood Johnson Foundation. And then at the Department of Health and Human Services (HHS). While at HHS, I put away my research and leaned into my work’s strategic side. But since then, I’ve partnered with my colleague and friend, Vicki Rideout, to produce research for clients like Hope Lab, the California Healthcare Foundation, and Common-Sense Media again, paired surveys with quantitative and qualitative work to give a clear picture.

I saw it in getting pulled into those higher-level conversations about health and healthcare at the Robert Wood Johnson Foundation, at HHS, and being part of the federal government. People who haven’t had the privilege to spend time in online patient communities did not see what I saw, which is how much innovation was growing up between the cracks of what we can all acknowledge is a broken healthcare system.

A System Versus Community View of Healthcare InnovationHealth Hats: That’s so interesting. I’m on the Board of PCORI (Patient-Centered Outcomes Research Institute), an exciting place to be. My image is not so much the cracks. I think we have the same idea, looking at it differently. I feel that innovations are happening in communities. People have a problem to solve, and people get other people together. They figure out what’s going to work for them. To a system, it looks like things are coming through the cracks, but that’s a system view. The underground seed, with all these roots and activity, then some little thing breaks up through the institutions. That’s a community view.

Hacking Healthcare and StartupsHealth Hats: I never thought of hacking as you do in your language. Hearing you write about hacking made me think that maybe hacking is all there is. I have this idea that activism should change the system. Maybe it’s better to cultivate hacking. It doesn’t affect the whole country like business does, going after the dollar, but it still impacts people.

Motivation to SolveSusannah Fox: Yeah, I want to react to that because I love this provocation of the metaphor of something growing up between the cracks as a system-centered view. I love that. The other way I think about it is the patient-led, caregiver-led, survivor-led revolution. Is that what they are? We are building the missing infrastructure. Some things are missing, and they’re building that infrastructure for themselves. I also want to say that, often, when describing a team of people that come together to solve a problem, you could use the same language to describe many startup companies. It’s a team of people who come together to solve a problem they think has the answer and want to affect the system. They want to help people. They want to scale. And that’s the same thing we see in the patient-led revolution. They want to help people, and they want to scale. It’s a fascinating question to think about. What are the motivations? The motivation to help people is at the base of many startup companies, nonprofits, and patient-led teams. Yet, how do you do that? You need resources. So, how do you get those resources? That is interesting. I appreciate that provocation. Thank you.

Call to actionI need your help to expand my audience to younger people in advocacy. I’m doing more in short-form videos. Please help by pointing me to communities of young advocates and the channels and hashtags they use so I can listen and learn. I now have one URL for all channels and media. https://linktr.ee/healthhats is where you can subscribe, access episodes, my website, and social media, and search the Health Hats archive. Your support is appreciated.

SeekersHealth Hats: I’m looking forward to your book. I am intrigued by your talking about seekers, networkers, solvers, and champions, but I want to start with which archetype you are.

Susannah Fox: It is a good question. Let me quickly describe each one. Then, I’ll share which one I identify as most often. The first group is seekers. Seekers feel that they’re not getting answers to their questions. The key here is that they decide whether their questions are being answered. They get to decide if the information is enough, and they decide. To go out on the hunt for more and better information, and it’s that spark, that jolt of energy that makes someone become a seeker. That is what I’m intrigued by. Often, when someone gets hit by a health challenge, they might be too stunned or exhausted to raise their hand and try and go out on the hunt. So that’s seekers. They go out on the hunt for information and don’t give up.

NetworkersThe second group is networkers. Networkers are people who naturally learn in the community. They can’t help but talk to others, whether online or offline. When they find something useful, they can’t wait to share it with their community. They’re people who pool resources and create a community where, frankly, wherever they go.

SolversThe third group is solvers and attack problems. If they are faced with an assistive device or medical device that isn’t working for them, they will try to take it apart and put it back together again. They will hack it, meaning they will. Try to find an elegant solution as a workaround, which is the original definition of a hack. Solver can also look at a system and see its flaws and, again, want to contribute to fixing that system.

ChampionsImage by Thought Catalogue on Unsplash

The fourth group is Champions. Champions have access to resources generally controlled by mainstream healthcare or institutions – funding, media attention, regulatory guidance, access to labs and manufacturing facilities, or unique materials. A champion will look across the landscape. See a patient-led or survivor-led team with a great idea but needs the resources they control, and they will share them with them. They’ll infuse that team with a resource the patient-led team needs to scale their idea.

Networker, Seeker, Solver, ChampionSo, you ask, which do I identify as? At my core, I’m a networker. I am almost infamous for being unable to resist talking to people. And I love it. It’s a feature or flaw. It’s part of who I am. I love to learn from people, which is a trait of networkers. I would say that when I’ve needed to, I’ve taken on the role of a seeker and even a solver. I don’t think I’m a natural solver, but I figured out how to fix something when I’ve had to. And I also stepped into a role as a champion when I was at HHS, for example, starting the Invent Health Initiative, which brought this idea of patients, survivors, and caregivers who are. Creating new assistive and medical devices, the hardware of healthcare, that them into this conversation at the federal government level.

Networker, Champion, SolverHealth Hats: I think that. I am also, at heart, a networker, and a champion. And I think that a champion now that I’m older and I’m quote unquote retired and I’ve got this seat on the board of PCORI, and I have a podcast. I’m not so much a seeker. I’m a solver, but mostly, I use other people.

Persisting BossWhen I was a boss, I spent time looking at my team. First, I don’t know. I would cull the herd. It’s not a lovely way to say it. Some people had no business being on the team and dragged everybody down. And when that happens, they must go. And then I would look at what was missing. I’m a person who has a lot of ideas and a lot of energy. I’m a good leader, and I can do the grunt work. But I’m not a maintainer and wouldn’t say I like it. I need help once it’s figured out. You must persist. There are different kinds of persistence. There’s problem-solving persistence, and there’s maintenance persistence. So, I would look for people with what I or the team didn’t have, which was beautiful because it works much better.

Leading by Helping the HelpersImage from Shutterstock

I didn’t think about seekers, networkers, solvers, and champions, which is a different way of looking at it. And so now I feel like my work is, I help the helpers, I don’t do that much, man, I spent 50 years as a nurse where I spent 20 years as a direct care nurse, and then I got into, being a student of organizational health rather than individual health. And so, then, I was a leader. And the challenge now is seeing people who are champions. Just because you’re a champion doesn’t mean you’re a good leader. I feel that understanding seekers, networkers, solvers, and champions helps people who are champions be better champions. Does that make any sense?

Actors on the Stage of InnovationSusannah Fox: It makes sense because I was writing this book. I didn’t start to include the archetypes. I originally started the book to trace the stages of innovation that the patient-led revolution is going through. However, I realized that in trying to explain the various stages of innovation, I became increasingly intrigued by the actors on each stage and their roles. And I realized that it would be more helpful to, instead of talking about these stages, talk about the people, talk about the actors, and talk about the traits that I’m observing. And I went back into my field notes. I have 20 years of field notes of talking to people, interviewing people, and survey research to start identifying the archetypes. Then, I did fresh interviews to test these ideas. And I also want to share that the seekers, networkers, and solvers emerged immediately.

It was apparent to me. Often, when I talk about peer-to-peer healthcare and the patient-led revolution, people say, oh, I know exactly what you mean. And they describe networkers. They describe people who have started Facebook groups who use Twitter to organize, etc. And I say yes, and there’s another group of people who are seekers who may never actually be networkers. Some solvers also may not be interested in sharing their inventions, but who can’t help but keep inventing things?

Emergence of ChampionsSusannah Fox: The archetype of champions emerged as I wrote the book because I realized how powerful it is. When does something move from being a grassroots initiative where something is helping a few people? How do you scale that to move to something recognized by the mainstream that has been lifted and given the resources it needs? And it’s only through the intervention of champions unless an incredible group of people can. They are networkers and don’t need the mainstream to notice their actions to serve their community. But that’s an exceptional group of people.

Serving CommunitiesHealth Hats: There are two examples I am aware of this minute about more generalizations: the Camden Coalition and the World Health Network. Those are two organizations that intrigue me. Be, I think it’s tough to expand beyond. The common thing about seekers, network solvers, and champions is they have a fire, and you can taste it.

Revolutionary Energy – Regina Holliday and Casey QuinlanImage from https://reginaholliday.blogspot.com/2016/03/how-do-you-join-walking-gallery.html

Health Hats: And to me, I sometimes must protect myself because it’s so intense. When I first met Regina Holliday, it was like, oh my God, I needed a bullet-proof suit, and then I learned that I learned to thrive on it rather than protect myself from it.

Susannah Fox: There is an energy field around revolutionaries. Not everyone is cut out to be a Rebel. One important thing to know is that you don’t have to be a rebel to gain the skills and value from the patient LED revolution. You could temporarily recruit somebody to your team. So, thank you so much for bringing up this energy that can surround someone; also, people are hesitant and say, wait, I don’t want to be a rebel. I don’t want to cause a revolution, but my mom or my kids. So, you can tap into the revolution. You could tap into the energy and get what you need. And you don’t have to be part of the revolution. You don’t have to be a rebel to benefit from the patient-led revolution.

From Health Hats, the Podcast https://health-hats.com/pod193/

Health Hats: I used to have this conversation with Casey Quinlan because Casey is a public revolutionary. There’s just no question. She was the epitome of a revolutionary in healthcare. And I would tell her I like to work from the inside.

Draft Counseling – Working from the InsideHealth Hats: I like to understand how things operate. For example, I dealt with the draft when I was 16 and worried about being drafted. I trained to be a draft counselor because I wanted to learn the ins and outs, which made me want to work from the inside.

But I couldn’t have done it without the revolutionaries who started the programs and trained me. And you’re right. So, again, I think this business of archetypes and energy is. I am learning how to create the balance for the moment to get the next thing done.

Champions Stoke FiresHealth Hats: People I work with who are hackers, change agents, or activists are often disappointed. Energy wanes, waxes, and wanes – I think it’s okay. I’m more of a, where are we today? What are we going to do now? That’s how I manage my health, and it is okay. I have MS. It sucks. Okay, here I am. What do I do? Okay, this new thing is happening. What do I do now? I want to do something but don’t have the capabilities right now. How could I have the capabilities? What do I need? Anyway, it changes, and so I think with champions- I don’t even see- I’m focusing on champions in this conversation. I think champions need a lot of help.

It’s hard work. It’s such a, I think it’s a lot of them. Is it fair to say many people who work with them are hurt? Why does somebody get into healthcare advocacy and healthcare hacking? It’s something shitty happened, to them, to theirs. And so that’s a sort of head of steam. It’s a kind of head of steam. I don’t mean a head of steam. It’s a type of head of steam that’s hard to work with sometimes. And I so I read your PDF when you sent it out, and now your pub. Oh, so your book, but anyway, one minute, and then we’re going to, you’re going to tell us about your book in more detail, but I’m ready to. I’m waiting for the publication on February 13th.

Rebels in Health – You Are Not AloneHealth Hats: So, tell us about your book.

Susannah Fox: Oh, we did. We’ve gotten into the archetypes that I introduced in the book. When you referred to the PDF, I should share that you were part of a small group of people with whom I shared a preview, and I sent you the PDF so you could read it. We could have this conversation and other conversations. Thank you so much for being a preview reader. So, Rebel Health, the field guide to the patient-led revolution in medical care, is coming out from MIT Press on February 13th; you can pre-order it now. I wrote it so that anyone who gets hit by a diagnosis, a health challenge, or whatever in their life finds themselves in the maze of healthcare and feels alone. Please know that you are not alone. A group of people would love to help you find the way out of that maze if they only knew how to find you. If you can find the courage to raise your hand, go out on the hunt as a seeker, or join a group as a networker, some people are ready to help you. So, I wrote it for the general population. I think everyone is going to have a health challenge. It’s not a question of if but when. And that’s one group of people that I wrote for this book.

C-Suite and Government Meet RebelsI was also thinking about my friends in the c-suite of healthcare who serve in government positions and have a lot of severe challenges in terms of their business, research, policies, and how they could benefit. From the incredible innovations and learning happening just underneath the surface of their gaze, the patient-led revolution. If you can align the patient-led revolution goals with your goals, whether your business, your policymaking, or your research, you will benefit from the energy being produced. We all have something to learn from patients, survivors, and caregivers.

Health Hats: Wow. Okay. What do you think are the most important things we’ve talked about?

Step into Your PowerSusannah Fox: One of the book’s most important messages is that you can step into your power. As a patient, caregiver, and leader, I tried to introduce a way to think about power, a way to think about either stepping into your power or sharing the power that you already have with people to solve healthcare problems.

Health Hats: It’s heavy. May the force be with you.

The Enemy is DiseaseSusannah Fox: One other point that I wanted to make is something they came out in, one of the discussions in the preview group, someone asked in the group, so if there’s a rebel alliance in healthcare, who’s the empire? Who’s the enemy? And Ben West, a fantastic data hacker in the diabetes space, said that the enemy is a disease. We won’t point fingers at any entity or any part of the industry. The common enemy of humanity is disease, and we need to stay united in working against the spread of disease. I love that. As another theme, Rebel Health is about lifting science and the social nature of healthcare. It’s about accelerating what is happening, an ancient human condition where we want to connect with others. And solve problems together, and technology is helping us to do that faster.

Health Hats: Thank you. This is great.

ReflectionImage by Ann Boland

I can’t recommend Rebel Health by Susannah Fox enough. The enemy is disease – thanks for that golden rule. Susannah’s archetypes: Seeker, Solver, Networker, and Champion meld well with one of my frames for health and advocacy, the three Ts and 2 Cs (Trust, Time, Talk, Control, and Connection). As a person who sees life as grey, not black and white, the one absolute I’ve found is that almost all leaders in healthcare perceive that they lead chaos. The archetypes plus the 3Ts and 2Cs may help leaders slightly controlled the chaos. Some order may be all we can ask for.

I buy my hats at Salmagundi Boston and coffee from the Jennifer Stone Collective—links in the show notes. I’m grateful to you who have the critical roles as listeners, readers, and watchers. Subscribe and contribute. If you like it, share it. See you around the block.

Please comment and ask questions:

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, Twitter, TikTok to @healthhats

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk
Leon van Leeuwen: article-grade transcript editing
Oscar van Leeuwen: video editing
Julia Higgins: Digit marketing therapy
Steve Heatherington: Help Desk and podcast production counseling
Joey van Leeuwen, Drummer, Composer, and Arranger provided the music on the intro, outro, proem, and reflection including Moe’s Blues for Proem and Reflection and Bill Evan’s Time Remembered for on-mic clips.

Credits

I buy my hats at Salmagundi Boston. And my coffee from the Jennifer Stone Collective. I get my T-shirts at Mahogany Mommies. As mentioned in the podcast: drink water, love hard, fight racism

Inspired by and Grateful to

Kathleen Noonan, Vicki Rideout, Nakela Cook, Kristin Carman, Regina Holliday, Yaneer Bar-Yam, James Harrison

Links and references

About our guest, Susannah Fox

Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, Former Chief Technology Officer for the U.S. Department of Health and Human Services, where she led an open data and innovation lab. She has served as the entrepreneur-in-residence at the Robert Wood Johnson Foundation, and directed the health portfolio at the Pew Research Center’s Internet Project.

Tom Ferguson, Lee Rainie, Alan Murray,

Vicki Rideout, Hope Lab, the California Healthcare Foundation, and Common-Sense Media

Related episodes from Health Hats

Safe Living in an Epidemic

Covid-19: End-of-Life Choices

Cinderblocks4 – Medical Advocacy at its Best

Creative Commons Licensing

CC BY-NC-SA

BY: credit must be given to the creator. NC: Only noncommercial uses of the work are permitted.

SA: Adaptations must be shared under the same terms.

Please let me know. danny@health-hats.com. Material on this site created by others is theirs, and use follows their guidelines.

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The post Rebels in Health – the Enemy is Disease first appeared on Danny van Leeuwen Health Hats.

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Celebrating my audience. Describing my multimedia journey, stats, ongoing advocacy, future episodes and a musical bonus featuring the host on the Bari Sax.

Show Notes at the end.

Watch on YouTubeNone today.

Read NewsletterThe same content as the podcast, but not a verbatim transcript. Could be a book chapter with images. download the printable transcript here

Contents

Table of Contents

Toggle* Watch on YouTube * Read Newsletter * Episode + Proem + Podcast intro + Managing my bandwidth + Still learning in my sandbox. + Advocacy + Podcast Outro + El Quitrin * Episode Notes EpisodeProemWelcome to this bonus episode of Health Hats, the Podcast for subscribers I appreciate. Life is good while I play in the sandbox of audio-visual communication about best health. One of my Reckoning colleagues (we review each other’s podcasts), Craig Constantine, describes his audience in each episode so he remains focused. I look at the bobbleheads on my windowsill: Scarecrow, Rosie, the Riveter, and Scully from the X-files. My audience is people who help people on their journey toward best health through caregiving, technology, measurement, spiritual strength, and planning. You get the idea.

For an added treat. At the end of this post, I’ll include Lechuga Fresca Latin band playing El Quitrin by Bebo Valdez with me on the Bari Sax. Link here if you want to listen now.

Managing my bandwidthI’m finding video creation and production so exciting that I spent 100 hours on the last episode, #214, with Fred Trotter. I can’t sustain that pace. I realized I had spent so much time on a full-length video with images, title slides, and the like that I neglected the meat and potatoes – the blog/newsletter and audio podcast. I also need more time to play my horn and improve my music production skills. So, after spending all that time, I published the full audio podcast (63 minutes), two five-minute and four one-minute videos, and a 30-second teaser/trailer. I think I’ll put the five-minute ones on YouTube as discrete episodes as they stand alone. You can find them here: Video 1: Naughty Secret about Chart Reviews https://youtu.be/yLRilkr1LJI and Video 2: ChatGPT and health coverage https://youtu.be/pk4wYl0_U9s.

Still learning in my sandbox.I remain committed to multimedia because you are all so different, and it’s a hoot. I’m continuing my understanding and skill at short-form videos for social media, especially Instagram. My team of Julia, Kayla, Leon, and Oscar cheer me on. I love that I can still learn.

If stats interest you – I don’t know what they mean – for some reason, the downloads for the audio podcast have increased from an average of 5-10 a day for years to 27 a day for the past 30 days (or an increased from 80 to 800 an episode). 90+% of those downloads are consistently listened to for at least 3/4 of the episode length over the years (that includes people who automatically download. See what I mean about not being sure what stats mean). For those who subscribe to the newsletter version, with almost 50% opened, and readers spend more than five minutes reading when they do open. Kayla tells me I should be proud of that. Social media stats indicate that people scroll past and increasingly stop but don’t stick around for over a second. It is early days, and I’m refining my process. YouTube shorts require clips to be less than 60 seconds, but I’m not sure that’s my target so I may go for two-minute clips on Instagram and TikTok. Again, this is a totally fun sandbox.

AdvocacyRebel Health by Susannah Fox

Advocacy-wise, my attention is shifting to Long Covid, community responses to health challenges, and understanding more about the characteristics of people who gravitate to and champion advocacy. My next episode is with Susannah Fox, author of Rebel Health and a hero of mine (book published on February 13, episode on February 18). I have an episode coming up with Jen Stone about all things coffee. I’m scheduled to meet with Kathleen Noonan, CEO of the Camden Coalition. We’ll likely schedule a time to record a conversation. There is so much good happening in this insane time we live in.

Be safe, drink water, love who you can, and fight racism. Keep in touch.

Podcast OutroI host, write, and produce Health Hats the Podcast with assistance from Kayla Nelson and Leon and Oscar van Leeuwen. Music from Joey van Leeuwen. I play Bari Sax on some episodes alone or with the Lechuga Fresca Latin Band. I now have one URL for all channels and media. https://linktr.ee/healthhats is where you can subscribe, access episodes, my website, and social media, and search the Health Hats archive. Your support is appreciated.

I buy my hats at Salmagundi Boston. And my coffee from the Jennifer Stone Collective. Buy some coffee here—links in the show notes. I’m grateful to you who have the critical roles as listeners, readers, and watchers. If you like it, share it. See you around the block.

El QuitrinEl Quitrin played by Lechuga Fresca with Danny Health Hats on Bari Sax.

Episode NotesPlease comment and ask questions

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, Twitter,,TikTok

Production Team

Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk
Leon van Leeuwen: article-grade transcript editing
Oscar van Leeuwen: video editing
Julia Higgins: Digit marketing therapy
Steve Heatherington: Help Desk and podcast production counseling
Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection, including Moe’s Blues for Proem and Reflection and Bill Evan’s Time Remembered for on-mic clips.

Other Credits

Susannah Fox, author of Rebel Health

El Quitrin by Bebo Valdes played by Lechuga Fresca with Danny Health Hats on Bari Sax

Disclaimer

Inspired by and grateful to all of you subscribers and Susannah Fox.

Related podcasts

Playing Baritone Saxophone with Disabilities. Can Be Done!

Cultivating a Podcast. 10 Years Now. Still a Hoot and a Half.

Internal Fire of Best Health: Intuition, Mystery, Spirit, Soul

Creative Commons Licensing

The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs, and use follows their guidelines.

The post Bonus #5: Continuous Learning in My Sandbox first appeared on Danny van Leeuwen Health Hats.

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Fred Trotter on the balancing privacy & connection, the role of AI in societal judgment, and practical privacy protection strategies with a nod to Mighty Casey

Watch two five-minute podcast clips on YouTube.

Click here to view or download the printable newsletter with associated images

Contents

Table of Contents

Toggle Episode + - Proem - Podcast intro - Privacy in Digital Communication - Harm reduction, safety, data aggregation - Communication minimalists and maximalists - Privacy in small villages during the Bronze Age - Privacy in the viral modern age - Judicial engine - Privacy and shame - Denied access - Peer-to-peer connection and privacy risk - People-to-needs connection - A connection you don’t know you have - Harm reduction - Oversimplification of harm reduction - Redlining - AI Artificial Intelligence - Call to action - ChatGPT and health coverage - Aggregating information - AI judicial processes by Insurers outside the courts - What can I do to reduce potential harm? - The Light Collective - Password managers - Pseudonymity - Low-tech approaches - The Electronic Frontier Foundation - Inter-rater reliability in chart reviews - Inter-rater reliability and AI - AI can make a complex system faster, not better - Situational awareness - Expectations of organizations - ChatGPT and Large Language Models - The Mighty Casey Quinlan Approach - DALL.E – AI Images - Privacy of creators - Dangerously hopeful - Reflection - Podcast Outro - Please comment and ask questions: - Production Team - Credits - Inspired by and Grateful to + Links and references - Related episodes from Health Hats - Creative Commons Licensing - CC BY-NC-SA - Disclaimer EpisodeProemHow does YouTube know so much about me? I’m searching on my browser for solutions to my too-slow-responding Bluetooth mouse. In moments, YouTube feeds me shorts about solving Mac problems. I’m following a teen mental health Twitter chat, and my TikTok feed shows threads about mental health apps. How do they know? I’m getting personal comments about my mental health. My mental health is mostly good. Who else will know? Do I care? I live my life out loud. I don’t share what I wouldn’t want on a billboard, which, for me, is almost everything. When is that unsafe? When would I be embarrassed? I’m no longer looking for work, so I don’t care. Who can access my data? What should I share? What does privacy* even mean? How does privacy impact the need for connection? Isn’t privacy a continuum – different needs at different times from different people? So many questions.

Today’s guest, Fred Trotter, co-authored the seminal work Hacking Healthcare. Fred is a Healthcare Data Journalist and expert in Clinical Data Analysis, Healthcare Informatics, Differential Privacy, and Clinical Cybersecurity.

Privacy in Digital CommunicationHealth Hats: I picture movement along a continuum when I think about Digital Privacy. Complete privacy is connecting with no one. That’s intolerable. No privacy is connecting with everyone about everything. That’s unsafe and exhausting. Privacy and risk tolerance go hand in hand for me alone and for me with my peeps and tribes. Risk tolerance isn’t fixed it changes with context. My thoughts get muddier when I associate privacy and connection. They are flip sides of the same coin. I need community connection. But the more I connect (content and reach), the more complex privacy becomes. My approach to managing privacy involves harm reduction, a term used in substance use treatment. So, based on my ever-changing risk tolerance and my need for connection, how do I reduce the harm privacy issues can cause?

Harm reduction, safety, data aggregationFred Trotter: It’s funny that you mentioned harm reduction. A college friend of mine, Elizabeth Chiarello, is an opioid researcher. She studies pharmacists and their situations in different regulatory contexts. She is a harm reductionist. During this conversation about harm reduction, I think harm reduction is like patient safety, where there are two versions of the word. One is a term of art that comes from a particular clinical context. Of course, as you point out, harm reduction is usually talked about in the context of opioids, which means let’s not criminalize this and instead focus on reducing the harm that this complicated and miraculous class of drugs provides. Patient safety is a similar term, wherein the specific clinical context is a set of procedures that hospitals should follow to ensure that unnecessary harm doesn’t happen. Then, the more general lessons could come from these approaches to harm reduction. Perhaps this concept should have a life outside this context and become broader. Let’s take away some of the judgment in harm reduction, like shame associated with some consequences. These negative, arbitrary consequences are associated with a particular clinical topic. Patient safety, like harm reduction, is the generalizable version in whatever context you are discussing. Are you using best practices to reduce patient harm in a particular context? Honestly, very simple. As you switch from an inpatient hospital to an outpatient context to the context of doing research and data aggregation, it’s unclear what patient safety means.

So, what do privacy and harm reduction mean? That’s something to chew on. These are terms that mean what you want them to mean in the context of a conversation. They’re pretty good terms. The internet, in general, has taken terms like health equity and made them politicized and controversial. The internet can tear a word apart and make it useless. People hear a word and hear different meanings or stories when they say the same word. That makes good-faith communication difficult. Similar words like patient, safety, privacy, harm, and reduction all have some powerful expectations.

Communication minimalists and maximalistsFred Trotter: When you talk about the risk spectrum, I hear two privacy and cybersecurity camps I can’t entirely agree with. One camp is we’re going to communicate no matter what. Use HTTPS, an encrypted connection, as opposed to HTTP. But we’re going to communicate, we’re going to send data around, and we’re going to do what needs to be done. We’re not thinking about the implications of the data moving. It’s somebody else’s problem-communication maximalists. Then there’s the camp I used to have problems with: let’s shut it all down. I want my medical bills to go over snail mail, please. I don’t want electronic anything happening to me. Let’s go to zero on communications if I can prevent it, and let’s wait until we can figure out how to secure it- communication minimalists. The implication of what you say when you say, I have a risk spectrum, is, do you want the communication to happen, but not in all contexts? And you’re willing to trade off some communication to reduce risk in some contexts. Contexts, in and of itself, acknowledging that some balancing needs to occur from my perspective, are the basis for a sophisticated conversation. A surprising number of people need to be convinced that any consideration of privacy is reasonable. Like any balancing, it is good because they’re communication maximalists; any communication is good, and communication minimalists, no communication without absolute privacy.

Privacy in small villages during the Bronze AgeFred Trotter: Suppose sociologists and anthropologists look backward in time and consider how things were when most of the world lived in small villages. In that case, it’s tough for the whole village not to know everything about you. If you look back into the bronze age, running a city was a logistical nightmare because you didn’t have trucks or anything else. You have grain carts coming in and out to feed people in all these villages, so the vast majority lived in places with under 200 people. But all cooperated to make some land work effectively. So, there was no privacy, but there was also no aggregated data there. I guess there was no harm in scaling, for lack of a better word.

Privacy in the viral modern ageFred Trotter: If you go viral in the wrong way in the modern digital era, either you or I could say something dumb and go viral in the wrong way on this and every call we’re on. But if you do something where you think nobody’s watching, and somebody is watching, somebody does have a camera, you think you have privacy, you don’t, and that becomes viral. That could ruin your life and sometimes should, right? So, I think issues like police violence and the cases where police officers are misbehaving, we need cameras for a lot longer than we’ve had them. I’m sure thankful that we have the cameras now. So, I’m not necessarily even saying that going viral negatively and having mass consequences with your reputation destroyed for a million or a billion people at once is necessarily a negative thing. In some cases, that’s warranted, but it is a new judicial engine, how we’re going to judge people and how we’re going to evaluate them.

Judicial engineHealth Hats: What do you mean by a judicial engine?

Fred Trotter: I think it is an alternative to the traditional rule of law, a system for judging. So, if you and I disagree, and we haven’t committed any crimes – like if I hit you in public, that’s assault. There’s a judicial process that the government takes over once that crime has occurred. But we can see each other in private court and around this system of jurisprudence, the rule of law. Certain things are assumed, such as innocent until proven guilty. People fail to realize how much evolution has occurred because we have the concept of trial by judge, contrasting with trial by jury. And you can go to a court and decide very early in the process which of those two things you prefer. Sometimes, you can’t. The concept was that God would favor whoever was right in the argument. If you lop my head off, well, you were right. And vice versa. So, the judicial process has taken centuries to evolve. It has variations across the globe. The variations are significant. Suppose you think about the judicial engine system in Singapore. For better or worse, it is famously different from the one in the United States. So, we have this concept of adjudicating problems and potentially passing judgment on people and social media.

Privacy and shameHealth Hats: How would you define privacy?

Fred Trotter: We have this ancient bronze village. If you screw up, it’s limited to 250 people. And if you screw up, you might have to switch villages. And then we get to the modern era, and there was this weird period where you could get a house in the suburbs and have a greater degree of privacy than you had in the village. Nobody knew your business. You were behind your closed doors, and you had your yard. The yards were buffers against information leaking out. Now, we have a reduction from that temporary place of strong privacy to what we have today. There have been many revolutions in our understanding of shame. As we’ve been studying it lately, we’ve understood what a powerful force it is, and that is the mechanism by which this extra-judicial system works. So, the freedom to process the issues in your life might bring shame, either in the sense that I feel it myself or that other people are attempting to make me feel it, on issues that might be so personal that your shame might be a problem. One thing differentiating patients in how they come out on privacy is whether their medical condition is socially acceptable and socially welcomed, which, of course, changes in society about what’s welcome and what’s not. So, I don’t think you can talk about privacy effectively without discussing shame and what we choose to shame in our culture. I do think how I think I’m unique in defining it that way.

Health Hats: I never thought about shame.

Fred Trotter: I have this long hallway in my house. If you look that way, there’s a long hallway; it’s not a big apartment I have. I love my apartment because of the long, thin hallway. I frequently find myself because I’ve forgotten my implements, you know, walking naked down this long hallway, and there’s just one building on the other side. There’s this giant window that can see in my long window. Now, I’m not ashamed of how I am naked. I’m okay with my body and everything else now, but that doesn’t necessarily mean that I’m keen to have somebody with a camera taking a photo. So, am I ashamed of my body? Do I have shame for my nakedness? What privacy means is, I’m good if I’m thinking about it, from the perspective of a photo on the internet that never gets taken down in the Barbra Streisand effect. That one probably well-meaning neighbor, I don’t know them, can take time to figure out how to get a picture through my window. And I think everyone’s windows are the same way, right?

I’m not unique in this situation. It’s just the situation I’m thinking about. I think there’s probably an equivalent situation where you live, and every person has those and neighbors unless they’ve taken a lot of effort to ensure they don’t. It’s not actually that people who are concerned with privacy don’t subject themselves to those variables. I think there is a lot of space for discussion. I’ve been thinking about shame for a long time, and I think this patient community has a lot of shame issues when they use their preferred [social media] platforms. Some people don’t feel shame, such as people who have colostomy bags—having a digestive system that essentially is no longer a hundred percent inside, for lack of a better term. There are people now who go online and say. I will take pictures of myself in a bathing suit with my colostomy bag at the beach, which is marvelous. I applaud that because I think what you’re trying to do there is you’re trying to refactor the shame. You’re trying to say, well, this is not something shameful. It’s just a fact of life for me, and I won’t put that in your face. But, you know, if I want to go to the beach.

Denied accessHealth Hats: Okay, there’s this piece of it that’s shame, but then there’s a piece about what people do with the information. If I am denied access to something, I don’t get a job, or I can’t get insurance or something.

Fred Trotter: Well, I hope my definition extends to that. Because what I’m talking about is not just that for which you feel shameful.

Health Hats: Oh, you did say that.

Fred Trotter: The sense in which other people say that in you is unacceptable. We are going to go extra judicially.

Health Hats: Oh, we’re back to the judicial. So now this is falling together for me. So, what do you think about this? The connection, the desire for connection, and your tolerance of privacy risk.

Peer-to-peer connection and privacy riskFred Trotter: So, I think you’re absolutely in that vagary. I think there are two different underlying meanings for connection. They have two very different implications if I’m talking about my need to communicate with you and my stuff with you, which is peer-to-peer connection stuff. Society is still reeling whenever we have a new medium with different rules. TikTok works differently than Facebook, which is different from Instagram. Every time that happens, we have a different understanding of what it means to be peer-to-peer.

People-to-needs connectionOne-on-one and peer-to-group peers. Communication in terms of what clinical privacy might mean. However, I also think that when you say a need for connection, I think of the boring stuff, which is, in many cases, a much, much bigger deal: you have a very dull need to connect to your health insurance company. I think there are people to people, and then there are people to needs. You switch clinics. That’s a connection. You get a new insurance. That’s a connection. All these connections are tedious and happen in the background, and then there are the connections you willfully make, which are making a new friend and having a new romantic relationship.

It’s a new community when you’re a patient who’s just been diagnosed with X, Y, and Z and want to discover what other people are doing. Those are different, but they both fall under the definition of connection.

A connection you don’t know you haveFred Trotter: I think there’s a middle ground where you have a connection made that you assume is not one where your privacy is invested, but it is. Credit card companies and Facebook are perfect examples. It’s completely different than deciding to connect and share what’s going on in my personal life with a new person individually or in a group. These supposed boring and safe connections that you have with your health insurers and people in the HIPAA world, privacy extracted as a business case where you have a connection. I think your paradigm is correct. There’s a connection, privacy, and how they interact. When I’ve shared something personal with you, I’d rather you not say that to the whole world. That’s privacy as a peer-to-peer phenomenon. When I’m talking to my doctor, or I’m talking about health insurance covered by HIPAA and this new middle ground where Apple knows whether I have HIV, even though I’ve never explicitly told Apple, I’ve not necessarily used their health tools. It understands because it’s following me so entirely that they know that. Google does so for different reasons: Amazon, Facebook, and many other places you wouldn’t think, Target, where you shop famously, you know, are in this category of people who can infer with a very high degree of reliability what your health conditions are and other things that you might want to keep private. So, I think there are at least three big buckets of what connectivity and privacy mean when you think of connectivity versus privacy because of the regulatory and practical circumstances under which we live.

Health Hats: And they are.

Harm reductionFred Trotter: If we talk about harm reduction, it’s similar. There are multiple levels of harm reduction. There’s harm to me, from individual to individual. There’s harm that you don’t necessarily see. You’re unaware of what’s happening; this means somebody knows something about you, sells it, denies you something, you know, that’s hidden.

Health Hats: So, with reducing harm, there’s stuff you can control, and there’s stuff you can’t. I would be pressed to say what I can control and can’t. What do you think about the harm reduction in terms of this? We’re talking about a better understanding of how complex any of this is.

Fred Trotter: So, let me make helpful oversimplifications. I invite you to do the same. It helps complicate. You have to acknowledge that there is an oversimplification. So, I’m oversimplifying a bunch of things to make valuable points. Let’s oversimplify the peer-to-peer thing by assuming that if you’re rude to people at a birthday party, all your friends and family are at the party, and you’re rude; they’ll shun you a little bit, right? And so the problem on the, the, the problem with peer-to-peer privacy, you can oversimplify to be that scales nearly infinitely so if I’m rude at a birthday party now. I say something that, you know, the parents don’t appreciate, the birthday child doesn’t appreciate, and somebody catches on a camera that can scale, but the whole world knew that Fred was rude in a birthday party.

So, scaling is the problem with the peer-to-peer? Let’s assume that is all there is to this.

Health Hats: Right. No, I hear you. But that’s a good point.

Oversimplification of harm reductionFred Trotter: it’s a good oversimplification. It’s just that what used to didn’t scale now scales. The problem with them is that let’s assume that the peer-to-peer stuff is there. Let’s assume, also for an oversimplification that your doctor and your insurance company are always on your side. So, let’s assume everything that HIPAA covers works in your favor. You know, that’s a dangerous oversimplification because we know that that’s not true. But let’s assume that it is, and let’s assume that when we talk about the con, the real problems with privacy are this much less regulated, much less opaque, middle ground of big tech understanding stuff about you that you didn’t know that they understood, where you didn’t explicitly tell them.

RedliningFred Trotter: And I think the redlining problem is the problem. I’m referring to the case of the racist past of the United States, where there were explicit rules in the financing in the industry to ensure that certain parts of town were available only to people of certain races. Now, of course, the problem with that is that there’s a very explicit, racist past, and there’s a study by 538. And, of course, you didn’t introduce me, but I’m a healthcare data journalist. So, I’m a con; I want to use data and understand things. And 538 are data journalists who cover hot healthcare topics. It’s like they’ve discovered that, in general, the former explicit practice of redlining carries over into a modern world where redlining still happens.

The neighborhoods are still segregated, and it just continues. The experience that I think is critical for redlining is that it is in this zone of the judicial processes that are not formally part of the judicial system. People are making societal judgments about people, and they don’t know. Of course, any community talks. So, if your community can never get more mortgages in a particular area, it’s not like you don’t know that, right? But there’s also no formal judgment. You don’t understand exactly what’s going on. Who is doing that? Is it the government, and is it the banks? Is it the real estate agents? And, of course, the answer we know now is all the above. We’re participating in that. So, what’s happening? I’m very, very concerned. Well, two things. One is that explicit policy, which was made illegal a long time ago, was practiced even before that and still has impacts today. And, practically speaking, in some cases, you could say that the policy is not over. It embeds an unethical practice into a system that impacts everyone. I’m very concerned that those unethical practices are embedded into modern AI.

AI Artificial IntelligenceFred Trotter: And, of course, I’m not the first person to consider the possibility that modern artificial intelligence might be racist or sexist. You know, it’s unethical and discriminatory in some other way. That’s what everyone’s talking about. I think as a healthcare journalist and, in this conversation, I’m much more interested in discussing precisely how those problems can be healthcare-related as opposed to real estate. I don’t know anything about it. I don’t know anything about redlining. I don’t know anything about real estate. That’s not my area except knowing this is a huge problem affecting our society. Also, it is one of the areas where, even now, your zip code is more important than your blood pressure in terms of your healthcare, right? And so there are cases where I try to be at least somewhat informed that these issues ultimately impact people’s health. I have a story about what I’ve recently learned about AI, which I will discuss extensively. Because I think it’s essential to understand. I think about this judicial thing; you’ve picked it up four times. Thank you for that.

ChatGPT and health coverageFred Trotter: I’m thinking about this extra-judicial, outside of the formal court system judgments we always make in society. The most important thing in healthcare is coverage decisions. Is your treatment going to be covered? Is your medication of choice going to be covered? Will the medication that works for you be covered instead of the one that works but doesn’t? I discussed this on my video casting on LinkedIn, where a physician used ChatGPT to write the letter he would send to an insurance company to say this procedure should be covered. I can’t remember the clinical topic; it doesn’t matter. I didn’t understand it when I was talking about it. He said something like, take my side in a clinical argument.

Then, he constructed the clinical argument, had a respectful tone, and provided references. So, sure enough, ChatGPT spits out this thing. What I thought was interesting was that there was no question about whether he was right. He just told ChatGPT that he was right and then had ChatGPT argue with him. So, I did, in live streaming. I tested to see if I could reverse the polarity entirely. And I said I’m an insurance company chat, GPT. And here’s the clinical topic precisely as the physician described it. Show why that’s not necessary and provide references, right? Use a respectful tone. Sure enough, ChatGPT took the other side of the argument and asked why that was unacceptable. So, one of the reasons why I have been so focused on the judgments that we make and how things get decided is that I think it’s going to be substantively outsourced to AI that has access to parts of your digital footprint that you wouldn’t necessarily want them to put together in a particular way.

Aggregating informationDo I have a problem with the fact that I’ve got an STD? Do I have a problem with the grocery store knowing that I bought ice cream and them knowing that I got a particular prescription in the pharmacy? They knew that I was there, let’s say at two; what time is it right now? It’s Tuesday in the early morning. It’s not an average time for a professional to go to the grocery store or the pharmacy. But if I have an urgent matter, I will go there. So, am I comfortable with the grocery store, knowing when I was there, what the medication was, and that I bought a particular item in their grocery store? I don’t have a problem with that. I have a problem with them putting that all together and knowing that I have an STD. Yeah, I do. That’s not their business. So, they are, of course, putting that information together. It’s not that they’re putting that information together to figure out whether Fred has a particular STD, if Fred has a particular condition, or if Fred has this or something else that might be considered shameful. They’re putting everything together for everyone. Is everything suitable? They want to have this picture because that’s a valuable picture they can sell. They can sell me more if they understand my problems, what interests me, and what I might buy.

AI judicial processes by Insurers outside the courtsHowever, in certain circumstances, that information is super damaging. So, I’m very concerned with AI. We have all these processes like judicial processes where you request to have your medication covered, and then the insurance companies send it back and say, well, no, we’re not going to do that. Okay, you can appeal that to a higher level, and you can say my doctors are now involved, my doctor’s mailing you. And it goes back and forth like this until almost all judicial processes outside the courts have finished. Then, they will switch to being in the courts. And I foresee a human judge looking at a set of correspondence where no human has written anything. Where it’s been AI on both sides, all the way up to the top. And then the first time a human is saying is this judgment reached by this outside deciding system outside the courts. I don’t want to say extra-judicial because that has a meaning, but I think it’s hard not to say that.

Health Hats: I get it.

Fred Trotter: Outside courts decide, and then it goes into the courts, and then for the first time, a judge is there reading words written and read by AI, and no human has ever written or read. So, I’ve been denied my medication, and I know we’re working on it. But what I mean by we are the AI advocates for my doctor, and the AI advocates for the insurance companies have been interacting and trying to sort it out, and they can’t reach an agreement. And now, we will go to court about whether this medication is covered under my insurance plan. I think that’s not just; I don’t think that’s a fantasy. That’s going to be a new normal.

What can I do to reduce potential harm?Health Hats: I am awash in how complicated this is – how much risk there is and how evil it is sometimes. And so, what can I do? I’m not so much asking you precisely what I can do. I’m not asking that yet. I’m going with how we’ve been talking, breaking down the buckets within what I can do. Here’s what I can do at the level of password protection, like individual things that I can do, and I’m not minimizing anything. Like saying that password protection is enormous. But then there are policies and regulations influencing that. But how would you break down the domains of what I can do to reduce potential harm to myself in this arena?

The Light CollectiveFred Trotter: So that’s a difficult question. So, we formed The Light Collective, an organization intending to try and take a stand and provide some education about what you should be doing to protect yourself, to advocate for yourself and regulation, and these kinds of things. And I continue to endorse that organization. I don’t work with them as much as I did when Andrea Downing and I started it. But I continue to endorse their purpose and their actions. I continue to be impressed with that team. So, if you want a corpus of stuff to study, go to Light Collective. They’ve got a resource library. That’s probably what you want to read about.

Password managersFred Trotter: Password managers are essential. I understand the problem from my cybersecurity background, yet I find myself perplexed about exactly how to approach this stuff. I’m dubious that education and learning will help because I’ve learned a lot, and I’m still in a position where I don’t know exactly what to do.

Health Hats: That’s quite a statement.

Fred Trotter: It’s a problem. Let me tell you some of my generalized approaches. I use a password manager. I do not use a password manager that is incorporated into my browser. Using one in your browser is probably good practice because it’s simpler.

PseudonymityFred Trotter: I choose to go one step further. I started to embrace pseudonymity formally. I have two accounts on every device I have. I’ve got Fred Trotter, and then I’ve got another user I log in as. And I’ve got a separate private identity that I’m using to look up stuff. Suppose I’m concerned enough about my privacy to turn on anonymous mode, a private window. In that case, I should do that in a user account on my computer that is separate from everything else. I do a substantial amount of browsing over there in that world. I have a different Amazon account. I’m doing that because I want to break at least a little. I use the VPN over there. I’m trying to create a different whole identity so that I can’t be pegged down so quickly as precisely and exactly what Fred Trotter is interested in.

We also know his social security number; you can tie everything together. That’s an idea I’d not run by the collective to see if that should be default advice. Separate your work life from your non-work life. I’m Fred Trotter, and I consult about health IT, privacy, etc. That’s one user. And I’m a different user when watching Netflix and all that stuff. And I think that’s a good idea because there are many things you don’t think about automatically when you do that. So, a way to aggregate a bunch of good ideas, the VPN, the password manager, the different accounts, and everything else into a simple system that’s easy to do.

Low-tech approachesFred Trotter: Do you have any tips like that? What is the easiest way to ensure you’re naturally doing those?

Health Hats: Yes and no. The one thing is that I don’t like to say or put anything on electronics that I wouldn’t want on a billboard, which doesn’t deal with so much. It doesn’t deal with limits on access. It doesn’t deal with that at all.

Fred Trotter: But I think it’s exactly what I was suggesting with this idea, which is there’s a bunch of other things that you do correctly because of that, and that’s like when I try and don’t always succeed. When I’m discussing Danny behind Danny’s back, I always try to say, is this conversation something I would be comfortable hearing? And most of the time, I’m talking about you. And, of course, I don’t talk about you. I don’t talk about most people when I do, but I occasionally talk about others. I try to think before the conversation begins. I would have a conversation that, if it were recorded and this person heard it, they would either feel nothing or feel good about what I said – not that I’m hurting someone.

Health Hats: Is the mic on when you thought it was off?

Fred Trotter: Exactly. Then you’re okay. That’s a good policy for a dozen other reasons besides the excellent human policy. I’m suggesting honest advice to my two users on a single computer: have a personal computer and a work computer. But that’s honest advice. But I can’t afford to do that. Nobody can afford to do that. So, all two different users are as close as you can get to that. The other reason it’s good is that you turn off the work computer. It’s a good thing to say I’m not here right now. I’m over there. I’m on personal time. I think that’s positive. And again, I think the Light Collective has a lot of good stuff.

The Electronic Frontier FoundationThe EFF Electronic Frontier Foundation probably does the best for patient privacy without being labeled as a patient privacy organization. They release many tools, think carefully, and are constantly advocating. If you want something other than the Light Collective to learn, EFF is powerful.

Inter-rater reliability in chart reviewsThere’s a not great secret of the healthcare system: inter-rater reliability on chart reviews. Let’s say your healthcare organization will be doing a study on your healthcare conditions. Before that happens, somebody must review your chart and determine if you have the disease. Are you doing well or poorly? To what degree do you have side effects that will prevent you from participating in this study? Do you have a secondary condition that will prevent you from this study? So, researchers have people with clinical experiences, doctors, PhDs, and nurses, and they cross-train these people. I heard at that same conference that a large institution has 50 full-time employees doing nothing but this. These chart reviews are essential for research organizations. The naughty secret about chart reviews is that when two people do a chart review, they will get the same answer about 85% of the time, sometimes a little less, sometimes a little more. I’m talking about consistently if you have those 50 full-time employees, and you test them on the duplicate records repeatedly, and you see how often they agree about what they say. Based on clinical topics, you would think it would be something like 98% or 97%, which creates these rules of thumb in other industries where complex situations must be evaluated. They get up into the nineties, high nineties in the end. But in chart reviews, it’s shallow. 80-85% are average numbers. That’s not great.

Inter-rater reliability and AIFred Trotter: When you do a chart review or observational study, you will look at data. Suppose you will use that data to recruit for a clinical trial. The starting status of the patients is foundational. Then, we’re going to assign people into groups randomly. We will do all the work of studying the six or seven different permutations of study types. They’re all grounded in this chart review process. At this conference, they revealed, which was news to me, that they trained several off-the-shelf ChatGPT and some other large language models you can download on your laptop and run. The percentage of inter-rater reliability between the large language model and the people was 85%. The problem I see with that is it’s one of these cases where we have not adequately gotten human intelligence to solve a particular problem. When researching healthcare, we all live with this complex problem: people can look at the same healthcare record and see different things. Now, we’ve figured out how to make a significant language model stand in as one of these reviewers when you have 50 full-time employees doing something.

AI can make a complex system faster, not betterYou could also scale it out. You could fire half of your human raters, keep half of them, and not just have 25 replace them. You could have 250 replacing them. You can say, AI, why don’t you evaluate this chart the same way Mary does? But you know, when she’s having a bad day, like when she’s got a hangover, or when she’s feeling particularly pessimistic about people with diabetes, whatever it is like, you can intentionally introduce bias to these 250 large language models raters. And you have, say, 50%, 30%, or 10% human. But they’re validating that the large language models are not going too far askew. You’re just keeping a human in the mix to keep it from going crazy. You would probably improve your overall chart reviews. However, the improvements are limited to what human intelligence was able to accomplish, and human intelligence has not been able to solve this problem. As I’m hearing this, the insurance and the adjudication process concern me. I think the chart review adjudication process is of concern. In all these cases, we will be in a place very soon where we’re taking humans out of the mix without ever getting to something fair, equitable, reasonable, reproducible, and decent for patients, providers, and health insurance companies. I’m not interested in having whatever the patients say goes. But certainly, we are not in a place where the patients are fully respected.

Health Hats: When I first led an EHR implementation from paper to electronic, I had enough sense to know that our core billing data sets were crap – too many duplicate, outdated patients and providers lists. I tried to insist, not knowing how vital my instinct was that we clean it up before we automated. I was only somewhat successful. The data sets were messy, and they didn’t want to use the resources to clean it up. So, we ended up automating garbage, faster garbage.

Situational awarenessHealth Hats: Suppose somebody is trying to learn about privacy, risk, and self-protection. What would be your key takeaways?

Fred Trotter: Well, I think it’s essential to continue to follow the discussions about privacy and digital communication, following you, following me, especially if we talk or get together. This is an area of shared interest. Every time we get together, we talk about this. Following the EFF is essential. I think following The Light Collective, and when I say follow, I mean, like in the podcasts from the people associated with those organizations talking about these topics.

Health Hats: So, awareness.

Fred Trotter: Situational awareness. I think there will be a lot of QWERTY keyboard stuff where a technical decision seems like a good idea at the time, but it has negative long-term impacts when technology gets locked in. In the next ten years, we will make many decisions embedded for centuries, so everybody must be aware and plugged in. I think commenting on regulatory processes is probably more important than participating in political processes because our politics are so broken. There’s a vast number of complex issues that are handed down by CMS or FDA or agencies like that. Paying attention to regulations is good.

Expectations of organizationsFred Trotter: When I say this, every organization is dysfunctional. So, when I refer you to an organization, then you find out it’s dysfunctional, don’t resent me. That’s the way organizations are. But another organization I think is worth listening to is the Society for Participatory Medicine, which is as close to a patient watering hole as we have, with patients from the various patient communities coming together a little bit. I think they’re worth following.

ChatGPT and Large Language ModelsFred Trotter: I advise people to try to interact and understand how the significant language models work. Get good if you can at ChatGPT. Learn how the prompting changes things and how these large language models work. Returning to that story, when they first turned the LA large language model on and asked to do chart reviews, it was getting like 50% inter inner rate of reliability, and then they changed the prompts. And they got it up to 85%. So I think there will be programming with an English component, programming with natural language, which will come out of the prompting of these languages. And that will be a new skill that will help me follow the conversation and understand. I think that’s a good thing.

The Mighty Casey Quinlan ApproachFred Trotter: If you have an issue where you are concerned that someone will use information against you, they will shame you systematically or make judgments against you, be careful. Think carefully about how you and your information flow and who has the information and who doesn’t. I think two approaches work there. One is to try to make sure the information doesn’t leave. But I would also say the way it should work is that just because you have the information go out, you can fight against the injustice in the judicial and extra-judicial processes and reduce harm. That is as important as we need people who are saying, yeah, I have my colostomy bag, and I’m not going to allow my workplace to use that to discriminate against me. I will be loud and annoying about that – the Mighty Casey approach – and we need people trying to protect their privacy. We also need people saying that just because you have information doesn’t mean you get to use it against me. So, we need people who are fighting and trying to get out of the fight and the people who are trying to get into the fight regarding information being used against you.

DALL.E – AI ImagesHealth Hats: I want to tell you a swift story. I have a 12-year-old grandson, and we get together for an hour every Sunday. We’ve been doing this since 2019. This time, we were playing with DALL.E, the AI graphic, trying to get it to draw a decent anime picture. We tried all sorts of ways to say what we wanted, being general, changing what the picture was about, and putting in certain styles of anime to replicate if it was watercolor versus photos. According to my grandson, it was all garbage and did not reflect any decent anime. So, I’m telling that story because we think a lot about AI and words, but there are also images.

Privacy of creatorsFred Trotter: That’s important. Let’s generalize as far as we can go. I think the future will be that an AI will be something you can talk to because that’s how you talk to communicate. It’s either in writing or spoken words. I think it will spread to the point where AI either badly or correctly imitates almost any human creativity. So, I want a song that sounds like this. I want a picture that looks like this. I want a video that depicts this. I want a novel. I want something printed, something sewn. I think there’s a massive space for machines doing creative work. The other side of that coin is that every time you ask the app to do that, it’s violating the privacy of everyone who did the art. And I’m not sure that privacy is the right way to say that, but you’re certainly taking from creators.

You’re prompting, but then AI is outsourcing creativity by aggregating creativity. I’m going to look at a thousand pictures or sewings. I’m going to take the creativity of a vast number of people, reverse engineer it, and then produce something for you that is, in some senses, creative. But it’s not clear to the degree that it’s de novo creative versus creative in the way that it’s just aggregated imitation. It’s not clear what that means.

Dangerously hopefulFred Trotter: It’s so complicated like this: the people who believe that AI will make people more productive. I think they’re woefully uninformed, and they are Pollyannish. Is that the right way to say it? It’s just dangerously hopeful.

Health Hats: Thanks, Fred.

Fred Trotter: All right.

Health Hats: We’ll have to do this again. Thank you so much.

ReflectionHow long of a shelf life will this conversation have? The tension between community, learning, safety, shame, and technology, however you define them, will never cease. Significant changes in technology have unexpected ramifications. Imagine life before and after the introduction of fire, the wheel, the printing press, penicillin, light bulbs, the telephone, contraception, and batteries. All predating computers are affecting privacy, fear, shame, and connection.

I appreciate Fred’s insistence on considering definition and context when discussing privacy, harm reduction, health equity, and justice. I can’t imagine a tribe without justice inequity. The concept of Artificial Intelligence as the rapid aggregation of human creativity is so seductive. Should I open my heart to that seduction a little bit, a lot, or not at all?

Perhaps Fred and I should have this conversation again in a year or two.

I buy my hats at Salmagundi Boston and my coffee from the Jennifer Stone Collective. Links are in the show notes. I’m grateful to you who have the critical roles of listeners, readers, and watchers. Subscribe and contribute. If you like it, share it. See you around the block.

Please comment and ask questions:* at the comment section at the bottom of the show notes * on LinkedIn * via email * YouTube channel * DM on Instagram, Twitter, Mastadon to @healthhats

Production Team1. Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk 2. Leon van Leeuwen: article-grade transcript editing 3. Oscar van Leeuwen: video editing 4. Julia Higgins: Digit marketing therapy 5. Steve Heatherington: Help Desk and podcast production counseling 6. Joey van Leeuwen, Drummer, Composer, and Arranger provided the music on the intro, outro, proem, and reflection including Moe’s Blues for Proem and Reflection and Bill Evan’s Time Remembered for on-mic clips.

CreditsI buy my hats at Salmagundi Boston. And my coffee from the Jennifer Stone Collective. I get my T-shirts at Mahogany Mommies. As mentioned in the podcast: drink water, love hard, fight racism

Inspired by and Grateful toAndrea Downing, Jill Holdren, Valencia Robinson, Ken Goodman, Virginia Lorenzi, Michael Mittelman

Links and referencesToday’s guest, Fred Trotter, co-authored the seminal work Hacking Healthcare

The Light Collective

embrace pseudonymity

EFF Electronic Frontier Foundation

Imagine life before and after the introduction of fire, the wheel, the printing press, penicillin, light bulbs, the telephone, contraception, and batteries. All predating computers and affecting privacy fear, shame, and connection.

Related episodes from Health Hats

Bioethics: Autonomy. For Me, On Behalf of Me.

Garbage In Electronic Data is Faster Garbage

Safe Living in an Epidemic

Creative Commons LicensingCC BY-NC-SAThis license enables reusers to distribute, remix, adapt, and build upon the material in any medium or format for noncommercial purposes only, and only so long as attribution is given to the creator. If you remix, adapt, or build upon the material, you must license the modified material under identical terms. CC BY-NC-SA includes the following elements:

BY: credit must be given to the creator. NC: Only noncommercial uses of the work are permitted.

SA: Adaptations must be shared under the same terms.

Please let me know. danny@health-hats.com. Material on this site created by others is theirs, and use follows their guidelines.

DisclaimerThe views and opinions presented in this podcast and publication are solely my responsibility and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors, or Methodology Committee. Danny van Leeuwen (Health Hats)

The post Fear, Shame, Access, Connection -Privacy in Digital Exchange first appeared on Danny van Leeuwen Health Hats.

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Lisa Stewart interviews Health Hats to discuss family, music, & listening to younger activists taking over navigation & reform of healthcare.

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Contents

Table of Contents

Toggle Episode + - Proem - Podcast intro - Why reflect? Accept and look forward. - Bitch in bursts, not dribbles - Catastrophizing, pathological optimist - Music, podcasting, grandsons - Listening to younger activists - Connection through video, Instagram, YouTube shorts - Impact - Call to action - Progressing in music - Progressive condition and music - Travel with abilities in Costa Rica - Travel with abilities in the US - Words of wisdom - Reflection on Advantage - Podcast Outro - Please comment and ask questions: - Production Team - Credits - Inspired by and Grateful to - Links and references - Related episodes from Health Hats - Creative Commons Licensing - CC BY-NC-SA - Disclaimer Episode*ProemBoland van Leeuwen family

Happy Holidays, family, friends, and colleagues. May the 2024 New Year infuse wonder, community, and rejuvenation.

I reunited with my friend, Lisa Stewart, at the PCORI Annual Meeting a few months ago. Lisa suggested that she interview me for the new year. When I met Lisa, she was Senior Engagement Officer and Health Equity Advisor at PCORI (the Patient-Centered Outcomes Research Institute). Currently, Lisa is the Principal at Torchlight Engagement Advisors & Leadership Coaching. Her joy lives in connecting ideas, people, and groups for organizations serious about improving the health outcomes of over-burdened communities through health equity strategy implementation and integration, cross-sector partnerships, impact investing, and capacity-building. We ponder privilege, listening, bitching, travel, family, and music. Hang on.

Why reflect? Accept and look forward.Health Hats: Hi, Lisa Stewart. Lovely to see you,

Lisa Stewart: Wow. It’s lovely to be seen and be here with you. We had this wild and crazy idea that it was time for Danny to be interviewed, right? We’re going to turn the tables on Danny.

DALL·E 2023-12-16 – a color photo of a person looking in a mirror and seeing a black and white younger version of herself

What better time of year as we march into 2024 and start thinking about the life we want to lead and what we want to do differently? I’m thrilled to be in conversation with you anytime, Danny. Anything you want to say?

Health Hats: I have mixed feelings about reflection. On my podcast, I start with a proem, a preface. Why do I have the conversation? Why this guest, why this topic, whatever. A reflection at the end, done after production – the interview, the producing, the editing – were there pearls here? Is there one more story to tell? But the reflection is essential even though I’m not really a backward-looking guy.

Lisa Stewart: Tell me more.

Bitch in bursts, not dribblesHealth Hats: Life has ups and downs. It is just the way it is. You can’t have an up without a down where everything is flat – no ups and downs. Sounds boring to me. I have a chronic illness, and I’m pathologically optimistic, right? That’s my style. Other pathologically optimistic people have taught me that you need to take two minutes periodically and just vent. And do the life sucks. Woe is me stuff. But mostly, I don’t want to look back and think woe is me. So that’s what I mean by not looking back. Accept what is and what are we going to do now.

Lisa Stewart: Very practical. Do you have a ritual around your two-minute releases?

DALL·E 2023-12-16 – biracial couple laughing, one in a wheelchair looking at their watch

Health Hats: It’s a good question. The UMass Graduate School of Nursing dean introduced me to this idea. She had health problems, and we recognized this optimism in each other. She had breast cancer and surgery and the whole thing, and I had been newly diagnosed with Multiple Sclerosis. She didn’t have a watch on, but she looked at her wrist and said, okay, you got two minutes, start now. So I bitched, then she did. It was hysterical. It’s tough to bitch for two minutes straight and be creative. You can’t bitch and say the same thing over and over. Two minutes is a long time. After about a minute, it’s just absurd. So now I have a friend I texted just yesterday; we need a bitch session. She’s ready. I did it with my wife a few times, and she’s lovely, and it’s OK. However, having somebody else who’s dealing with whatever insanity is different.

Lisa Stewart: I love how you called out the arc between starting the bitching and then recognizing that there’s an absurdity in it? The process itself lands back to the word reflection, and out of that, you see the kernels in it.

Catastrophizing, pathological optimistHealth Hats: I was born this way. I didn’t do anything to be pathologically optimistic. Maybe because I was the child of Holocaust survivors who are both catastrophizers and pathologically optimistic, I

Danny’s parents’ wedding photo

inherited that, whether through genes or learned. And it works for me. My downs are in the middle of the night when I’m lying there, catastrophizing. I know that two things affect my symptoms the most – when I don’t drink water and when I’m down. Symptoms are worse. They’re just worse. It just is.

Lisa Stewart: Does your optimism, your pathological optimism as you call it, does that ever piss people off, particularly other people who are living with chronic illnesses? Do you ever get any blowback?

Health Hats: No. Really, it’s the other way. People think it is so cool that I’m optimistic, and I’m thinking, you guys have no idea. You know what I mean? I think I didn’t do anything for this. So many people have depression with whatever they’re dealing with. And that’s what they’re dealing with. I didn’t do anything. I have so much going for me. I’m a two-legged, cisgender, old white man of privilege who’s pathologically optimistic, and I could count my blessings.

Music, podcasting, grandsonsLisa Stewart: At the opening, you say you normally record and then go back and figure out the themes and then do a wraparound. But you have some idea going into it what you’re trying to impart, what you want to say. What do you want this episode to say?

Danny playing sax in the Saturday afternoon Blues Funk Band at Ryles

Health Hats: I’d like to reflect on basic things in my life – my health, family, work, and music. These are the big things in my life. They’re all going swimmingly. The most exciting thing to me is centered around music. In my professional life, I am really good at what I do. I’m as good as anybody anywhere, I think. But music, not so much. So, it’s the place of humility for me. I really work at it. I play every day. And when I say every day, 320 days a year, unless I’m traveling or so busy with something, I play music. It’s the best thing ever. It’s one of the things I do with my grandkids – both my podcasting work and my music. And I have a 15-year-old grandson and a 12-year-old grandson. One lives upstairs, and one lives about eight or nine miles away. They’re on my production team. That’s just a hoot and a half. My grandson, Leon, who lives upstairs, is an outstanding written word editor. He helps me take the transcripts and turn them into newsletters. And Oscar, who’s 12, is an excellent video editor. He coaches me on video editing, and then they’re both musical. Oscar spent the night this weekend and pulled out his laptop, opened MuseScore, a composing app, and said, Opa, let’s write something. And we worked on a four-bar ditty.

Lisa Stewart: I love how you bring all those together.

Danny playing bari sax in the Cobleskill Jazz Band

Health Hats: It’s great. I learn a lot from them.

Listening to younger activistsHealth Hats: That ties into then to another thing. In my advocacy work and podcasting, I’m an old fart. I’m 71 and on my way out, and I feel like my audience is mostly in their forties, fifties, and sixties and older – veterans in the business. There are a lot of young people out there in advocacy – 25, 30, 40. What are they dealing with? What are their issues? Where do they live and hang out? How do they communicate? Again, this is nice with the grandkids because they’re much more familiar with Instagram and one-minute stuff than long-form. I’m trying to move in that direction.

Danny’s home studio

Lisa Stewart: Are you listening to any podcasts?

Health Hats: I find it hard to create time to listen because I’m full of myself and doing what I’m doing. And listening is another thing to do. With podcasting, I force listening. I just finished doing a series on emerging adults with mental illness. I started with a couple of emerging adults who were in recovery from their mental illness issues, and then parents and teachers—a spiral of sorts to bring in people and include them in my process.

I’ve also been learning about different groups like Generation Patient, Students with Psychosis, and the Camden Coalition, all places with younger people either supporting people with chronic illness or having chronic illness. I’m trying to become part of those spaces and still learning to do that. If I have a goal for the year, it’s listening and contributing to those spaces, which is a hoot.

Connection through video, Instagram, YouTube shortsHealth Hats: Now I’m producing videos and adding short-form material like shorts for YouTube and reels and posts on Instagram. Creating good one-minute stuff is time-consuming. I don’t do anything simple. I just can’t help it. I’m always learning something new, like adding my music or images. What’s my ask? What am I expecting from people? It’s not just that I’m putting something out. How do you stimulate people? Once I find where people congregate, I hang out; first, I lurk in different groups.

Generation Patient is international for people in their twenties. I’m 71. So, I asked Sneha Dave, the executive director, if you mind me lurking. It could be creepy, right? She said, oh yeah, sure, we’d love it. We love having you whatever you want.

My activist peeps

ImpactLisa Stewart: I can see how that’s invigorating. We need that to bolster us. We have a lot of value to give. I’m putting myself in your category, Danny, but I like recognizing that, so what’s their return value?

Health Hats: Yeah, I’ve had my chance. I can’t say that I’ve had much impact. I’ve encouraged and celebrated people and initiatives. My work with PCORI is a career capper, an opportunity to influence things on a big scale. But really, I’ve had my chance. I don’t have a don’t care attitude anymore. I was energetic and stupidly creative. We need that young energy. My time is over. People in their thirties and forties now, maybe they can make a difference.

Lisa Stewart: Yeah, but many of us would dispute that you haven’t made a significant impact, Danny. And I would even say, just to give the audience some context of how we know each other. One of my earliest memories of you was observing a meeting, an advisory board, or an advisory committee meeting, and I remember. You were cutting through a lot of bullshit, laying it on the line as only Danny can do. And it was like a recognition of you’re holding it up. And it’s not just that you brought your experience; you rarely speak from an I space. But your hallmark is that you bring the voices of many into the room. You hold it down, and they should feel comfortable bringing them into the room in the best way you can.

Health Hats: Thank you. That’s nice. In my PCORI trajectory, one of the things that was important to me was feeling okay, so I am this two-legged, cisgender, old white man of privilege, and here I have a seat. Am I the right person in that seat? What about a woman of color? What about so many other people who don’t have the opportunity to sit where I sit? I’ve gotten feedback, but you have the seat; use it. Just use it. Open the door. Go for it. You are who you are. You can’t do anything about that. You’re a two-legged, cisgender old white male privilege. You were born that way, and there you are. So, use it. And that was helpful.

Lisa Stewart: And look that questioning, interrogating, and you know why me a little bit. It’s what can keep us humble, right? And keep us in the space of asking ourselves, who are we serving? Because in every room I’ve been in with you, Danny, you are trumpeting loud and clear to get to the community. Like I’m not the community. Like you’re, very clear. I am not all communities. We need a footprint, get in, get to those communities.

Health Hats: Thank you.

Lisa Stewart: Hats off to you.

Call to actionI need your help as I expand my audience to younger people in advocacy. I’m doing more in short-form videos. Please help by pointing me to communities of young advocates and the channels and hashtags they use so I can listen and learn. I now have one URL for all channels and media. https://linktr.ee/healthhats, where you can subscribe, access episodes, my website, and social media, and search the Health Hats archive. Your support is appreciated.

Progressing in musicLet’s talk music. We’ve intentionally not used the word resolution, but should there be anything that you want to see for your musical development in 2024? You play the Bari sax, right?

Health Hats: I have a teacher I’ve been studying with for 15-16 years a sax professor from Berkeley College of Music. Great guy. I’ve taken a leap in basic things like counting to four in the last few years. When I say counting to four, I mean feel four bars, which may sound like when you can’t count to four, you get lost, which was my problem, especially in soloing, like I have no idea where I am in the form. So that’s something that I accomplished this year. I can count the four. I’m like, it’s just so exciting. It sounds idiotic, but it’s fundamental, so now I’m trying to play in a Latin band, and it’s a very egalitarian group. They are just lovely people. Absolutely lovely. Very warm and interested and forgiving and experimenting. And so what I’m gearing up now is I want to be the leader for a tune, where it’s my, I’m like, this is making suggestions about how we arrange it and listen and count people in and who’s soloing and, and I’ve, like purposefully not taken a leadership role in music because I take a leadership role in everything and I can’t help it. It’s who I am. It was nice not to lead somewhere and have a part of my life where I’m the frontline. However, now I want to introduce the group to a tune. Then I’d like to compose something with my grandsons. They’re psyched. Oh my God, I can’t believe they want to do this with me. Oscar plays piano and guitar a bit and just got a clarinet. Leon plays piano, and he played trombone for a while, and I think he’s interested in saxophone. And they’re both into creating music electronically.

My bari sax is a big horn, which has been an issue for me over the last few years. I can’t carry it anymore. It’s too heavy, and my back can’t take it. Having gear is challenging. But a couple of years ago, Jeff, my teacher, had found this company in

Lechuga Fresca Latin Band at the Brookline Porchfest

Germany that made these stands so that I can put the horn in the stand and either sit or stand and play. The bandmates are my roadies. They’re willing to haul my stuff. I recently bought an EWI, a wind synthesizer that plays like a horn, instead of having a piano that’s a synthesizer where you can use different sounds. I’ve been trying to play it. It’s a whole different instrument.

EWI5000 wind synthesizer

Progressive condition and musicHealth Hats: But I always think ahead about progression. I have a progressive illness, and there will come a time where – maybe there won’t – but I’m like, let’s face it and prepare. If it doesn’t happen, okay, thank you. It’s likely, so what am I going to do? I want to keep playing music, so I got something light and different.

Lisa Stewart: Since you’ve been playing, your illness has changed.

Health Hats: I’ve been fortunate as the last four years I’ve been stable. Thank you, Lord. If I stay like that, okay, I stay like that. But I just don’t know. That’s the catastrophizing in me. Someday, it’s not going to be whether it’s from MS or because I’m an old man. I have a primary care doctor who says, you’re still an old white man, and you have old white man issues. I’m here to help you take care of your old white man issues. I wasn’t born without a prostate.

Lisa Stewart: I have seen musicians very up in age who, at the time, were at a stage in life where they had limited mobility, needing quite a bit of assistance to get on stage with their instrument or get to the keys. You could physically see it as a change. And it all just came through like the aging process.

Health Hats: Look at Tony Bennett with dementia.

Lisa Stewart: Yes. Have you experienced any of that? You may not be physically feeling great, and then you pick up your instrument and have a moment of feeling differently physically in your body.

Health Hats: For me, it’s more like my first neurologist when I got diagnosed, and he found out I was playing saxophone. He said he has no treatment that compares to playing the saxophone. I have intercostal involvement, my breathing muscles, and I play this big horn every day. I have dexterity issues. I play this big horn with heavy keys. Music creates new brain pathways, and it’s good for the soul. And he says I got nothing. I got nothing that’s going to come close. His visit intro was always, have you fallen and Are you still playing the saxophone? For me, it’s more long-term. If I go away for two weeks and don’t bring my too-big horn, I can tell. It doesn’t take long to recover. That’s a great thing. It doesn’t take long to recover, but it’s like moving, playing the horn, and drinking water. Those are the three main things. And indeed, I’ve been happily married for 48 years, and I have great kids and great grandkids, meaningful work and friends, and all of that.

Lisa Stewart: You just named it Danny, like the recipe for success.

Travel with abilities in Costa RicaSantiago de Compostela, Spain

Health Hats: Another thing that’s been big for my wife and me is travel. We’ve done the Camino, a pilgrimage in Europe, several times. Last year we went to Costa Rica. The interesting thing about Costa Rica is that it’s not an accessible country. It’s mountainous, it’s rural. But everywhere you go, somebody is tuned in to disabilities and thinking about how to help you. The idea that a country was aware of that as a national thing is. It was fascinating.

View from wheelchair

Traveling with a disability is such a hoot on so many levels. When sitting in a chair and traveling, you see many behinds and many kids. I like different perspectives and problem-solving. What am I going to do? How am I going to handle this? What can I do? It’s fun to see the world that closely: hiking or riding or whatever. We decided a couple of years ago that travel is our priority. Are we going to upgrade the bathroom or travel? Travel.

Travel with abilities in the USLisa Stewart: Yeah. Hands down. I’m with you. What do you think is the difference though? You pointed to this ethos that happens in the people. What’s different in this country?

Health Hats: Tourism in Costa Rica is a huge business. And Juve, our guide, was the grandfather of disability travel in Costa Rica. I lucked into that relationship. He started stuff, and then the government took it over. They have a certification process for guides. They think about equipment, sites, and safety. But what’s here? This is a country that thinks a lot about itself. And not so much others. I’m making a gross generalization here. Personal support is uneven. There are still plenty of really helpful people, and usually all you have to do is ask for people’s help. But it varies a lot. And so that was interesting because it made me realize that we all need help. And somebody with disabilities needs a particular kind of help. Very different kinds of help. There’s a whole constellation of kinds of help people need. I think institutionally, we’re not oriented to helpfulness, or we don’t see, we’re oriented to money, we don’t see how helpfulness pays, maybe because it’s got a long tail. We’re more of short-term gratification. So, I don’t know.

Juve Acuna, grandfather of disability travel in Costa Rica

Lisa Stewart: It’ll be interesting to continue to pick up those differences as you travel the world. In contrast, I’m wondering if one ingredient is discomfort with difference.

Words of wisdomHealth Hats: Any words of wisdom from you?

Lisa Stewart: Words of wisdom. I’m drawing a blank. I wish you a fantastic 2024, Danny. To recap, your list of things you want to pursue and will make happen in 2024 falls on the space of the things you love the most. Family, traveling, music, learning, and being around younger generations and an activist, to be an activist in the way you do best. Sounds great.

Health Hats: All right, have a lovely holiday. Best to you and your family.

Lisa Stewart: You, too.

Reflection on AdvantageAnn and JoJo

So, life is good, crazy good. I couldn’t ask for more. The word for the year is Advantage. Ten takes on advantage:

In every adversity there lies the seed of an equivalent advantage. Robert Collier.

I’ve been blessed with the opportunity to express the views of black people who otherwise don’t have access to power and the media. I have to take advantage of that while I’m still bankable. Spike Lee

Why is it that if you take advantage of a corporate tax break you’re a smart businessman, but if you take advantage of something so you don’t go hungry, you’re a moocher? John Stewart

I feel like I’m a creative, and I want to take advantage of that. Lil Peep

One advantage of marriage is that, when you fall out of love with him or he falls out of love with you, it keeps you together until you fall in again. Judith Viorst

I think that has to do with my awareness that in a sense we all have a certain measure of responsibility to those who have made it possible for us to take advantage of the opportunities. Angela Davis

There’s only one life. There’s no repeats. You only get one life, and you gotta take advantage of it. Victor Cruz

There may be an evolutionary advantage for schizophrenia genes during famine. Feng Zhang

My only advantage as a reporter is that I am so physically small, so temperamentally unobtrusive, and so neurotically inarticulate that people tend to forget that my presence runs counter to their best interests. Joan Didion

The advantage of being eighty years old is that one has had many people to love. Jean Reno

Please comment and ask questions:* at the comment section at the bottom of the show notes * on LinkedIn * via email * YouTube channel * DM on Instagram, Twitter, Mastadon to @healthhats

CreditsI buy my hats at Salmagundi Boston. And my coffee from the Jennifer Stone Collective. I get my T-shirts at Mahogany Mommies. As mentioned in the podcast: drink water, love hard, fight racism

Images

Sue Heatherington, fresh sight from the quiet edge provided the photos in the Reflection.

Images created in DALL.E for mirror image, biracial couple laughing,

Inspired by and Grateful toAll you readers, listeners, watchers

Links and referencesLisa Stewart

Generation Patient,

Students with Psychosis,

Camden Coalition,

Related episodes from Health Hats

2023 AI Holiday Letter, Oh My!

2021 Holiday Letter: Trust

Costa Rica – Travel with Abilities

BY: credit must be given to the creator. NC: Only noncommercial uses of the work are permitted.

SA: Adaptations must be shared under the same terms.

Please let me know. danny@health-hats.com. Material on this site created by others is theirs, and use follows their guidelines.

The post Reflection on Advantage during the Holidays first appeared on Danny van Leeuwen Health Hats.

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Pathways & switches of pain affect well-being & productivity. Amy Baxter, MD. explores recent insights about managing pain and learning coping mechanisms.

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Contents

Table of Contents

Toggle Episode + Proem + Podcast intro + Learning from lived experience + Oldest and Best Survival System + Pain as opportunity + The thalamus conducts the switchboard + Pain: Your brain’s opinion of your safety + What’s going on? Communicating to physicians + Sickle cell, self-knowledge, mu receptors + Neurotransmitters: on or off + Brain Fertilizer + Exercise as WD-40 loosening lubricant + Acceptance and Commitment Therapy + Building Resilience to Trauma and Pain + Call to action + Holocaust PTSD, pain + Melissa versus Fibromyalgia + Helpers: Child Life Specialists + Brain’s survival system + Phlebotomists and clowns + Pain wuss or high tolerance + Fear and control + Hope in the right frontal cortex + Guiding someone to manage their pain + Primary care in Managing Pain + Override and telehealth + Cultural humility + Soul points and a bucket of pain + I am not my pain + Love myself, pain included + Reflection + Podcast Outro - Please comment and ask questions: - Production Team - Credits - Inspired by and Grateful to - Links and references - Related episodes from Health Hats - Creative Commons Licensing - CC BY-NC-SA - Disclaimer Episode*ProemBuzzy, Relief from Needle Pain by Amy Baxter

How crazy is it that pain is one of my favorite topics? Not so crazy as pain may be life’s most common symptom. One study pegs the annual cost of pain (as a primary diagnosis) to be between $261 to $300 billion. Yikes. No one I’d rather talk with about pain than Amy Baxter. Amy and I correspond regularly about life and pain. We last recorded a conversation about pain in July 2019, Pain: The Solution – Many Solutions. Our knowledge about the pathways and switches of the brain’s survival system has increased dramatically since 2019. Let’s jump right in.

Learning from lived experienceHealth Hats: You’ve learned much about pain since we last talked. Tell us about that.

Amy Baxter: I broke my neck in 2015 and then got intubated for a while, and then I had a ripped rotator cuff that I ignored until it got horrific. So, I feel grateful that I’ve had the experience to cope with my own acute and chronic pain, mostly chronic. It’s nothing like I imagine having a genetic issue or having an inflammatory ongoing issue, and particularly something like covid or fibromyalgia or an autoimmune system situation where it’s ongoing and systemic. Nonetheless, I’ve had that experience, which has been valuable. I also have been working with the National Institutes of Mental Health, Helping to End Addiction Long-Term Initiative, bridging that place between pain and opioid use because if we didn’t have the issues of post-surgical pain and acute pain that we treated with opioids, we wouldn’t have an opioid problem. I’ve been busy.

Health Hats: Goodness, where should we start?

Amy Baxter: Let’s start with the stuff I put in the TED Talk because I spent a lot of time trying to encapsulate what I’d learned so people could use and benefit from it, change society and how we deal with healthcare in this company or country—Freudian slip.

Oldest and Best Survival SystemAmy Baxter: Physicians are not taught about pain in medical school. We don’t know what it is. We don’t understand how to treat it. We don’t think it’s our job because we’re supposed to figure out what caused the pain and fix that or inflict pain to diagnose it. But most people go to the doctor for pain. So that was something I hadn’t appreciated. What we have learned about pain in the last 20 years through functional MRI is that it’s not what we do learn about in medical school, which is you poke your finger, and if you had lidocaine in there, it wouldn’t hurt. But if you don’t, it goes up to your brain and hurts. Instead, pain is just the oldest and best survival system, so it’s a full-brain, total symphony of everything you’ve ever associated with something you want to avoid. So, pain is not just the incoming stimulus. It is all the memory, fear, decision-making, and actions, and it’s just this giant response. So sometimes your brain is wrong about how much pain you should feel, and sometimes you can learn how to override the brain and say no, we’re fine.

Pain as opportunityHealth Hats: I automatically react whenever anybody uses the word should. And I’m wondering if I can frame it as being helpful to you instead of should.

Amy Baxter: It’s an option. I always tell my kids that it is an opportunity, not an obligation. So, if we understand that an opportunity is happening that causes us to feel pain, it makes it easier to think about ways to cope with it.

Health Hats: Unknown pain is so scary.

Amy Baxter: We talked about it offline recently. Once you’ve had chronic pain that flares back up, it’s easier every time to remember what you do that helps. And last time, you told me about hydration, and I had not been aware that even mild dehydration increases your pain sensitivity. What are the things that you tell people and the things that you do? What is your pattern? What do you do when you’ve had pain that then flares up?

Health Hats: I just ordered a shirt that says, drink water, love hard, fight racism, and drink water Is the top one.

Amy Baxter: All good things. And with the opportunities you do. That’s proportional.

The thalamus conducts the switchboardCreate in DALL.E

Pain goes into your brain in sensation nerves that get filtered in many places. So, they get filtered in the spine, they get filtered in the brain’s conductor, the thalamus, and when people do not have chronic pain, the thalamus sends information to the part of your brainstem saying, cancel that out. Or just dial that down, please. We don’t need that. But when you have chronic pain, that area of inhibition shrinks a little. And then the areas in the thalamus that say send this to the areas that get worried about pain and ramp it up. Those areas get bigger. When it’s something like knee pain that you’re going to have surgery for your osteoarthritis, the thalamus changes shape during the development of this pain. And then, six months after the knee surgery, it goes back to normal. This tells us that the brain’s responses to pain are very plastic. They can go both directions. They can be helpful in inhibiting pain. They can be unhelpful in decreasing that inhibition. And it also is something that can be modified. So, the next level of modification comes from pain, which goes from the thalamus to the brain switchboard called the anterior cingulate cortex (ACC).

Created in DALL.E

But whatever, there is a switchboard that then shoots that information out to memory, options, optimism, hope, fear, short-term and long-term decision making, and all these other places, and that ACC area can be very quickly taken offline by solving a problem. It must be a visual problem. It has to be a discrimination problem. Is that a cow or a horse, or is what I tell people to look at a line of text and count how many of the letters have holes because then your ACC is just, wait, what? That’s supposed to be a letter. I’m used to it in this context of resolving conflicts. It is the primary job of the ACC.

Health Hats: ACC one more time?

Amy Baxter: The switchboard, it’s the switchboard that is supposed to send the message of pain all over your brain. But if you give it a decision-making task. To resolve a conflict, it will prioritize that. So that’s why distraction works. If distraction is something that you’re paying a lot of attention to, particularly if it’s a problem or a game or something or a critical decision-making thing, that’s why it decreases pain. Because suddenly, the switchboard, which is supposed to be activating all the rest of these areas, isn’t.

The information never gets there. So, you never have that input that you interpret as pain.

Pain: Your brain’s opinion of your safetyAmy Baxter: The practical ways to do this. A couple of things: one great phrase is pain is your brain’s opinion of how safe you are and this whole thalamus changing shape and all this influence up and down stuff. One of the things that helps reshape your brain’s connection. They call them connectomes, and they can now see that the areas that the switchboard is sending things through get thicker, heavier, and faster. The more pain you have, the more traumatic it is getting that pain, so that connectome just is how efficient your brain is at feeling pain. The more you have that connection laid down, like with chronic pain or something traumatic, the more intense the pain is going to be perceived until you disable that until you get it down. Even if your body is fixed even once, this is why you get that. They call it ramp-up or central sensitization. If you’ve had something that has hurt forever, like knee pain, you continue to feel more pain in that area until, even if it’s fixed, it has a chance to wear down. I think the sixth month is also interesting because when people with chronic pain start on a program of intentionally trying to ignore the pain, if they know they’re safe, intentionally going, okay, I can push through this. I’m going to want to tolerate this amount of pain. It still takes about six months before you have a day where you realize you don’t remember if you felt pain yesterday or not. It takes a while. And the other thing about these connectomes is not everybody has the same intensity of response.What’s going on? Communicating to physiciansPhysicians need to know many of those things because it’s part of why I tell people when they’ve got a flare and can’t stand it and must go to the emergency room. And they feel awful, and people are looking at me as drug-seeking. It helps to have something that’s signed by another doctor that says this is the chronic pain condition I have. These are what I do. And I have a flare. It has been this long. Usually, it feels like this. It is different because of this. Because that’s the thing, you’ll get blown off because you’ve got something different. But all they’re hearing is chronic pain. And I’m here for medicines. It’s very much focusing on this is different, or my doctor and I agree. We do this when it gets to this level, which it has been for two days. And so that, it’s helpful to know that what’s going on is you have a connectome that is extremely efficient at feeling pain, and so that’s part of what’s going on.

Sickle cell, self-knowledge, mu receptorsHealth Hats: One of my dearest friends has sickle cell. She’s very sensitive to what’s going on with her body. And as you said, she knows this is where I need to kick my plan to another level, another route. This is when you go to the emergency room. This is when you, and then not communicating with the clinician, can be frustrating because she knows what will work. And she’s tried all those: hydration, distraction, rest.

Amy Baxter says, believe me, I’m an expert in my pain. What I know now is that the receptors in the brain to morphine are the mu receptors that are mainlining Dopamine.

So, it’s a reward center where you still feel the pain. It’s just that you’re not afraid and feeling out of control, and then you don’t care about the pain as much. Those receptors change over time. And so, for my friend, she got to a place where morphine wouldn’t work. It was only Dilaudid because she said there was about a year when nobody would give her Dilaudid. She was in excruciating pain, and they kept giving morphine, which barely touched it. So the whole concept that the reward receptors that make you able to cope with pain change over the years, but they also change over a couple of days, which is why when you get sent home with oral opioids after surgery, it is probably not going to do much at all for most people because those receptors have gone, all right, we’ve been bathed in morphine now for a few days. We’re just going to shrink in and not react as strongly. So again, this is the whole problem with having short-term oral opioids after surgery or after an acute event because there’s just, that’s the time where there’s a lot of stuff that’s better to deal with it. Chronic pain is just a different situation.

Neurotransmitters: on or offFrom Planet Volumes on UnSplash

Health Hats: So, you’re talking now about receptors. There are different kinds of receptors; some are personal, like genetic, familial, or experiential. And then when those receptors get triggered, I don’t know what words to use for any of this stuff.

Amy Baxter: Activate.

Health Hats: It sounds to me like then you’re saying that this pain that people are experiencing is this conglomeration of this whole menu of things that could happen and algorithms of pathways, whatever. Oh man, it’s just so complicated. What’s essential for the person is to have a better self-understanding.

Amy Baxter: Also, knowing the systems in the brain and how the brain communicates, is this a good thing or a bad thing? All these communications in the brain are either saying it’s bad or good. And when you’re activating like the Dopamine or the serotonin or love neurotransmitters or satisfaction or empowerment or mastery or connection, all those neurotransmitters or happiness neurotransmitters make you feel good. So, with pain, the neurotransmitter is trying to make you feel bad enough that you’ll avoid that situation in the future.

Health Hats: Okay, so that’s where you talk about whether they’re on or off?

Amy Baxter: They get switched, and then it’s like a New Year’s Eve cork that you pop, and a bunch of confetti comes out. So that’s what you trigger the neurotransmitter when it goes woo. And then, after a while, it brings it back in, and then you quit being able to go poo quite as much. But let’s be more practical. It is hard to think about this from a chemistry standpoint, but if you think about just these connections in the brain that are either good at deep, increasing pain inhibiting it so that it doesn’t bother you as much, or they’re good at increasing pain sensitivity to try to teach you your lesson.

Brain Fertilizerfrom canstockphoto.com/ now shut down

Amy Baxter: One of the most incredible things is that proteins in the brain can dismantle these connections that restore your brain to a normal function. One of the most powerful ones is that 10 minutes of exercise triggers a significant release of this Brain fertilizer. It’s called brain-derived neuropathic neurotrophic factor. It’s like brain fertilizer that will untangle some of these connections that make you feel more pain. When I was trying to get over month six or seven of my rotator cuff without getting surgery, and the cortisone had long worn off, and it’s this sick, sour pain that wakes you up every morning. I read this and was like, I’ve been too tired and sad to exercise. I will go ahead and do an elliptical for 10 minutes and see what happens. And after about three days of doing that, it was amazing how much better my arm felt. It wasn’t the arm getting exercised, but I realized it must have been this brain fertilizer decreasing some of the intensity of chronic pain.

Exercise as WD-40 loosening lubricantHealth Hats: It’s like WD 40 or something, right?

Amy Baxter: That’s true, too. All movement makes your brain say, okay, I don’t need to give a pain signal because we’re safe, and she’s doing this on purpose. We must be okay. Let’s stand down.

Health Hats: When I’ve experienced my worst pain, I have this goal of 3,500 steps a day. And when I had my worst pain, oh, I just the idea going outside and walking was even with my forearm crutches, it was like every step was excruciating, but I’m like determined. I’ve had it ever since I was diagnosed. I usually do 3,500 steps a day, so I could only really do a few hundred, but you are right after a few days of that. , I was in a different place. The pain wasn’t gone until I took steroids. That was more like the beginning of the end but of that pain. I was determined to take those steps. It made a difference. I didn’t get 3,500 steps. Oh my God. It was all I could do to get to the end of the driveway.

Amy Baxter: The elliptical thing and the BDNF is 10 minutes of your heart rate above 20% above average. So, you can even get that by doing cardiovascular weight stuff unless your arm hurts.

Acceptance and Commitment TherapyAmy Baxter: But there’s a bunch of things going on, Danny, with what you’re describing. So there is a therapy called Acceptance and Commitment Therapy that is more effective than Gabapentin, and Gabapentin’s really an anxiety medicine. It’s just a slower one, but fear and control are the volume knobs for pain. And so you took control and said, I am going to feel pain, but I accept this, and I’m going to commit to walking. And just by being intentional about it, by intentionally deciding that you’re going to take a little bit more pain and tell the brain to shut up. This is what you’re doing. That practice and control over pain is what gets it better over time. Feeling the pain but not being afraid because you’re doing it on purpose is part of what gets it better over time.

So, it’s this: it’s turning down the fear and turning up control. It takes a long time, but those are part of it. Stephen Hayes wrote about commitment therapy after six months. Again, it works much better than oral medications for pain because you just are like, you know what?

Building Resilience to Trauma and PainFrom https://www.resiliencywithin.com/

Amy Baxter: I won’t use how much pain I’m dealing with as a metric. It’s whether I’ve done my steps or other things. That’s a great example of it not working overnight, but after a couple of days, you realize it’s better than it was. It’s still not gone. It’s just a little more comfortable or culpable. I found a remarkable book I want to dig more into, but it is called Building Resilience to Trauma by a woman named Elaine Miller Karas. It’s about jacking down the autonomic nervous system. The fight-or-flight nervous system is associated with natural disasters, war, etc. And it often is coupled with pain, but her book is really about how to get people who’ve been, who got PTSD from trauma past it, when talk therapy doesn’t work. Her premise is that your oldest brain is so focused on safety that if anything reminds you or you even think about what happened, you’ll freeze up. And so it’s just focusing on my autonomy. I feel my heart rate going. I feel my diaphragm clenching up and giving you language for that and then going, okay, so when you start to feel that wear on your body feels good, get language for what feels good, and concentrate on how your knee feels, concentrate on how your foot feels. And in doing that, people’s heart rate goes down, their stomach and lungs unclench, and they can practice just a few times. And then they’re able to get past that frozen place. So, almost all the stuff she talks about in the book is simple. It’s nine steps. It’s super simple. And this is a book to teach people how to do it. Again, building resilience to trauma. They’re in Ukraine. They’re in lots of different war-torn places. I think it’s got so much application for getting past some of what sucks about chronic pain and learning how to concentrate on a different part of the body that doesn’t also ramp up your fear and make you feel out of control.

Call to actionI need your help to expand my audience to younger people in advocacy. I’m doing more in short-form videos. Please help by pointing me to communities of young advocates and the channels and hashtags they use so I can listen and learn. I now have one URL for all channels and media. https://linktr.ee/healthhats, where you can subscribe, access episodes, my website, and social media, and search the Health Hats archive. Your support is appreciated.

Holocaust PTSD, painHealth Hats: My mom was a Holocaust survivor and, growing up with somebody who had that kind of reaction. These are heavily triggered reactions. I will read this book because I bet some of the stuff her second husband Bill did just because he loved her and didn’t freak out that she was having these reactions. He was just about, okay, what can we do? I’m fascinated by the physiology, psychology, and spiritualism behind all this and how we can use it.

Melissa versus FibromyalgiaBook cover

Health Hats: When I think about how we use it, I think that so many people who don’t have helpers are turned onto this stuff. So, either they discover it for themselves, or they’re part of a community, like my friend in New Zealand who has fibromyalgia and a chronic fatigue syndrome program, and services that she provides or in her blog and her whatever.

Amy Baxter: Melissa versus fibromyalgia? Her stuff’s great.

Health Hats: I still follow her all the time. She’s brilliant. And anyway, that’s a whole other topic. On several levels, I’m thinking about how people find this opportunity that you’re describing, this knowledge opportunity. Then is it that they take stock of their health team, whether their health team is a partner, family member, medical person, or a non-medical clinician? How do they bring all this to bear? Because this is the rare person who could do this alone.

Amy Baxter: Because you’re exhausted. You’re overwhelmed and depressed because it’s abrading.

Health Hats: Yes. It’s exhausting. What do you think about that?

Helpers: Child Life SpecialistsAmy Baxter: The person who taught me the most about pain is a woman named Regina Yocum. She is a child life specialist.

Health Hats: That means she works at a children’s hospital.

Amy Baxter: Child Life Specialists got it before anybody else. It is the concept of increased control by explaining what will happen and letting somebody know what to expect. Decrease fear by giving people options and letting them choose how they want. Either what they want to distract themselves with and then advocating for pain management. No, we’re not going to do this until we have a topical anesthetic, or we’re not going to do it until we have Buzzy, or so that you’ve got somebody advocating for you.

Brain’s survival systemAmy Baxter: So, she had juvenile arthritis, which is rheumatoid arthritis. She mainly uses a wheelchair intermittently. Something like when I don’t remember how many surgeries she had and she said, here’s the trick to pain. You can only do so much with the nervous, the nerves that are bringing pain to the spine. You can only do so much to fix pain. And there are so very few medicines that will do anything for pain. And they don’t last long because your brain pain is your brain’s survival system. It’s going to overcome medicines after a while. But she said there are a lot of different supplements that you can try. She said there’s a whole bunch of the turmeric, magnesium, and other stuff we’ve discussed before, but you can do even more physical interventions. There are even more brain bodies and ways that you can help the neuro trans do stuff that will make the neurotransmitters make you more comfortable. And she said, knowing that there’s always some other combination you can try, the hope is the part, and having options is the most significant part for addressing pain. We put those into a book on our website. Just every evidence-based thing I could find. So we’ve got a link we can put. That’s what works for pain. It’s a free download. But I think having a resource to try something else is helpful. And I have one other idea about this that Regina taught me, but I want to let you have a chance to respond to that.

Phlebotomists and clownsScreenshot_2021-03-07-Laughter-League-on-Instagram

Health Hats: When I worked at Boston Children’s, one of the things that amazed me the most was there was this group of phlebotomists. When they came in the room, the kids, if they could move, would run to them and jump in their arms, and if they couldn’t move, their faces, which had been flat or miserable, lit up. And these were phlebotomists coming to take blood, and they were, it was just amazing. And that’s what they did. They were so tuned into understanding the kids and what they needed and what the routine was, and they did it. The kids were like, oh my God. They had control. They were just delighted to see her, and they felt safe. My other is the clowns, a specific type of child life specialist, and what they would do to go in the room and read the room, and then you know what will work and what will help.

Amy Baxter: Read the room and find the game.

Pain wuss or high toleranceHealth Hats: It was a whole other beauty. This all just makes so much sense. What’s funny is that I was at the chiropractor the other day. I went to the chiropractor, and his image of me is that I have a high pain tolerance, and my image of me is that I’m a complete wuss. And it’s tough for me to reconcile that, but now that I’m listening to you, I’m thinking that my tolerance for living with a lot of pain is low. That’s the wuss. I fast kick into, okay, what can I do? Okay, I must drink water. That’s first. That’s always first drink water. You know what I mean? And then I have this routine of okay, these are the things, do the vibration. Do you know what I got? If I don’t understand what’s happening, here are the things that generally work. But if it’s a specific pain, these things have worked already. I have three solutions. I know that one of them will work. And if one doesn’t work, I go to my wife and say I’m in trouble. She’ll help me navigate through that. But I never really thought, in turn, this is interesting, this dashboard, these switches, these, I mean, it all makes sense.

Fear and controlAmy Baxter: Everybody thinks it’s just wherever your baseline is and if you’re above or below it. It’s whether you’ve got a high tolerance or a low tolerance. One of the things you asked, and I think this gets into stuff Regina said, and your wife is when she was teaching families how to help kids with JIA or kids with pain. She said the thing is that Juvenile idiopathic arthritis is autoimmune stuff. What’s important? I came up with fear and control, or the volume for pain, but some of it’s because of what I’m about to tell you that she said. The thing is, if you feel vulnerable and you feel out of control and helpless, then it makes the pain worse, and you don’t do anything to help, and you don’t do anything, and so then you’re just muddled in it. She said, so what I teach the parents and caregivers to do is when the kid comes and says, I’m in pain, then it’s what would you like to try? And so, it’s not saying, let’s do this for you. I acknowledge that you’re in pain. That sucks. What do you want to try? Then you throw it back. And so, the person, the pain, is saying, maybe I’ll try this. And she said, and the thing is, often the kids are like, I don’t know. So then it’s what did you try last time? That was helpful. What was, or what’s something you haven’t tried in a while that has worked? So again, it’s still getting them back to where they’re empowered.

Hope in the right frontal cortexAmy Baxter: This area is in the right frontal cortex, where optimistic people have more activity. Hope kind lives here, and that’s the area that lights up in people who don’t have chronic pain. And it’s got decreased activity with chronic pain. So, the more you can teach somebody how to think about their options. I think you’re activating the receptors there that can decrease pain.

Guiding someone to manage their painAmy Baxter: So, the first thing is, what do you want to try? The second thing is, what have you tried before? Third, what have you tried a long time ago that you haven’t tried in a while? And finally, it’s, is there something that you think I can do for you? Then the final thing is, if they don’t come up with anything, why don’t I do this? But there are so many places where I know you can figure this out. The workbook helps. So, if they don’t look at the workbook, you can look at it for them and say we haven’t tried turmeric. Let’s find out the best turmeric to use that kind of thing.

Primary care in Managing PainFrom DALL.E

Health Hats: Let’s shift to working with clinicians. I’m fortunate because my primary care doctor will say. I don’t know anything about that. Tell me about your experience with acupuncture or chiropractic in a different way than she’s accustomed to. Still, I like that she’s okay, I get validated, and I tell her my experience, and she’ll ask questions, and then that’s part of her toolkit. And she said, oh, I’m glad to know that. I have some people that that might be helpful for. I talk to many people in an adversarial relationship with their helping people. And that seems so. I can say I live in Boston. Clinicians are coming out of your ears.

Override and telehealthHealth Hats: I can go, which I have done. You’re not it. I can try somebody else, but most people can’t do that. This might be out of the realm of this conversation, but I don’t know your thoughts.

Amy Baxter: People have that issue all the time. There’s a woman named Jenny Shulkin. She and her dad, who was the head of the VA for a while started a company called Override. And at this point, you must pay something for a monthly connection, which is unfortunate.

I don’t know if insurance covers it, but some do. But anyway, it connects you via telemedicine to pain doctors and all sorts of pain doctors, like pain psychologists and rheumatologists, but a bunch of different people so that you can find someone with a telemedicine visit who can help. It’s a relatively new business, but if you’re in the middle of a rural place, there is an option to find some expertise. And then, as everybody who has been frustrated with a physician knows, part of our training is to act like we know stuff. And you must be secure with yourself to do what your doctor does and say, oh, I don’t know about that. Tell me more. Then, you also must have the bandwidth as a physician to be curious enough to look stuff up and have the time to do it.

Cultural humilityHealth Hats: This is cultural humility.

Amy Baxter: Ooh, that’s a good phrase. I haven’t heard that before. That’s cool.

Health Hats: In a previous episode, I interviewed three people in the business of humility. Meaning, I don’t know, tell me more. Or that didn’t work. Okay, what are we going to try next? You are talking that language. Control that feeling of feeling helpless. I think in terms of physical, mental, and spiritual health. Spiritual health trumps all, as far as I’m concerned. Feeling helpless is spiritual. When I feel it slide, I must deal with it now because then, if I don’t, everything else is screwed.

Soul points and a bucket of painCreated in DALL.E

Amy Baxter: Do you mean filling your bucket and interacting well with somebody? My daughter calls them soul points,

Health Hats: Yes. I love that. Tell your daughter I’m using that. I don’t know how this relates and whether I’ll use this in the episode, but now I realize that even though I am curious, I do this work where I always try to learn. I realized that I am increasingly living in a bubble in my retirement. And what I mean by that is that anything that messes with my pathological optimism, I’m like staying away from just because I can’t deal with everything else if I’m not in that space. When I meet people who I like, those are soul points. When you meet somebody and feel that soul point with them, okay, now that is somebody you know I will connect with. Now, I can’t afford it if I meet somebody, and it’s like soul-sucking.

Amy Baxter: I had a real insight into how we can talk about switches and neurotransmitters. Opioids don’t stop the pain feeling. They just give you so many soul points that you don’t care. Dopamine is such a huge reward that your bucket is filled up enough that you’re not noticing the bucket of pain. But all those other things that give you soul points are less intense, but good neurotransmitters like serotonin and friendship, love hearing music, and smelling something. All those things release different positive neurotransmitters.

They’re little soul points and maybe smaller coins of soul points. But Dopamine is the big giant gold coin of soul points. Now I’m getting metaphors mixed up, but. That’s one of the things is that what, one of the ways to deal with pain if you can’t stop the source of it is to figure out how many other ways you can get stuff that makes you feel good enough that you can just tolerate or ignore the pain because I’ve got enough stuff, I’ve got enough soul points accumulating other places.

Health Hats: Oh my God, this is brilliant. This stuff is so essential. so crucial on so many levels. Is there another point you want to make?

I am not my painAmy Baxter: I think this goes along with the Soul Point concept and with what pain is. If you realize that pain isn’t you, pain is just an accumulation of the brain trying to protect you and trying to teach you something, but it’s not you. It’s just this accumulated number of negative neurotransmitters. It may make thinking easier, so I have this giant bucket. I just need to figure out ways to override it. And that the great thing is over the two millennia that humans have been around, we have developed for movement and for doing things with other people in the community to our soul points and to make us feel better. Since our society doesn’t do that now, thinking about overriding this accumulation of pain with things that Give you more community movement, dedication, and determination makes sense. That is how we’re designed to feel better.

Love myself, pain includedCreate in DALL.E

Health Hats: I appreciate that. I guess I think about it a little bit differently. I used to think what was important for me was like what you said: I am not my pain. I am not MS. I am not my disabilities. But what I found more satisfying in the last five or ten years is I just have to love that stuff. That is all part of me, and what makes me this crazy person is all that. Would I have had all these experiences? I would’ve never met you if I didn’t have MS and didn’t have pain. I would’ve never met you. And what a shame that would’ve been. You know what I’m saying? I feel, oh, let’s just embrace this stuff. I have love it that this is me. I love it. Now, I am not delighted with everything that I am. I can be such a jerk sometimes, and I have bad habits. It’s all part of who I am and the spice. I can’t take it away. That’s the other thing we talked about in 2019. My goal is not to not have pain. My goal is to appreciate life and function as well as I can, and with whatever constellation of crap I’m dealing with or goodness.

All right. This is an excellent note to end on, honey. I love you. It’s so good to see you. And thank you for taking the time with me. This is going to be a killer episode.

Amy Baxter: It’s always such a pleasure, and now, especially with the hat.

Health Hats: Be well. Thank you so much.

ReflectionFull disclosure: Amy and I recorded a previous conversation. We worried after the first recording that we were too technical. I didn’t understand it well enough to insert explanations myself. So, we tried again. Now my problem is that I have twelve possible nuggets from this episode. I only want three to five. I may be able to cut it to six. Let’s see, I didn’t include Oldest and Best Survival System, Pain as Opportunity, Thalamus Conducts the Switchboard, What’s Going On? Communicating to Physicians; Neurotransmitters, On or Off; and Exercise as WD-40 loosening lubricant. Phew. Much richness. Peace be with you.

Podcast OutroI host, write, and produce Health Hats the Podcast with assistance from Kayla Nelson and Leon and Oscar van Leeuwen. Music from Joey van Leeuwen. I play Bari Sax on some episodes alone or with the Lechuga Fresca Latin Band. I buy my hats at Salmagundi Boston. And my coffee from the Jennifer Stone Collective. Links in the show notes. I’m grateful to you who have the critical roles as listeners, readers, and watchers. Subscribe and contribute. If you like it, share it. See you around the block.

Please comment and ask questions:* at the comment section at the bottom of the show notes * on LinkedIn * via email * YouTube channel * DM on Instagram, Twitter, Mastadon to @healthhats

CreditsI buy my hats at Salmagundi Boston. And my coffee from the Jennifer Stone Collective. I get my T-shirts at Mahogany Mommies. As mentioned in the podcast: drink water, love hard, fight racism

Images

Sue Heatherington, fresh sight from the quiet edge provided the photos in the Reflection.

Many images created in DALL.E for a conductor, switchboard, primary care, soul points, and a bucket of pain, self-love, see you around the block.

From my UnSplash subscription, Tim Mossholder’s hoping hands, and Aparna Johri’s elliptical.

Inspired by and Grateful toMelissa Reynolds, Libby Hoy and colleagues at PFCC Partners, Jason Stewart, Laura Marcial, Jessica DeFrank, Penny Cowan, David Edwards, CJ Rhodes, Barby Ingle, Diane and Mallory Smith, Mike Funk, Robyn Tiger, Sarah Cloud

Links and referencesAmy Baxter’s Paincare Labs

National Institutes of Mental Health, Helping to End Addiction Long-Term Initiative

brain switchboard called the anterior cingulate cortex (ACC)

Central Sensitization

Sickle Cell

mu receptors

Brain Fertilizer: brain-derived neuropathic neurotrophic factor

brain-derived neuropathic neurotrophic factor

Acceptance and Commitment Therapy

Building Resilience to Trauma by Elaine Miller Karas.

Melissa versus fibromyalgia

Regina Yocum, a child life specialist.

The right frontal cortex, where optimistic people have more activity. Hope kind of lives here

Jenny Shulkin and her dad, who was the head of the VA for a while, started a company called Override

Related episodes from Health Hats

Pain: The Solution – Many Solutions

Accessible Yoga: Honor Your Body

Sifting through the Sand: Chronic Pain, Tech, Health Equity

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My son, Mike, died 21 years ago at age 26. Wasn’t born with a tattoo telling him how long he had to live. Best spiritual health of his life. Left me a sign.

Read NewsletterThe same content as the podcast but not a verbatim transcript. Could be a book chapter with images. download the printable transcript here

ContentsTable of Contents

Toggle* Read Newsletter + - Contents * Episode + Proem 2023 + Proem 2020 + Open Hearts 2018 + Love myself 2002 + He met a girl 2018 + Birthday wishes for the old guy 2002 + Spiritual health 2018 + Lifetime warranty 2018 + Not personalizing death 2018 + Leave me a sign 2018 + Reflection 2020 + Podcast Outro * Comment and ask questions * Credits * Links * Related podcasts and blogs * Creative Commons Licensing + CC BY-NC-SA * Disclaimer EpisodeProem 2023I resurrect this episode to celebrate Mike and thank you, my readers, listeners, and watchers. It’s hard to believe that 21 years have passed since Mike died. He would have been 46. We would have been proud of him, and he proud of us. “Danny helped me love myself. I had to love myself to have a good relationship with him.” Still, the most glorious thing anyone has ever said about me. Let’s celebrate loving ourselves and at least one more. Mike, I feel you.

Proem 2020I wasn’t born with a tattoo on my ass telling me how long I have to live. Welcome to the second anniversary of Health Hats, the Podcast, episode number 99. On November 15th, 2018, the first episode honored my son, Mike Funk, who died on November 18th, 2002, eighteen years ago, age 26, of metastatic melanoma. Mike, a wise poet, found his best spiritual health in the last year of his life. Hence, the most memorable sentence in my life. I wasn’t born with a tattoo on my ass telling me how long I have to live. I’m grateful to have known Mike, my son, our brother, our friend.

I resurrect this episode to celebrate Mike and celebrate this fantastic medium of sound and storytelling for advocacy and connection. Podcasting enriches my life and my work. I use podcasting to explore and organize my mind’s chaos, experiences, and feelings. I connect with people I admire for brief intimacies. I’m thankful for my podcasting compatriots. We have met weekly and biweekly for two years to support, critique, and challenge each other as artists and technicians. You know who you are. I’m grateful to my readers, listeners, sponsor, Abridge, and web/social media coach, Kayla Nelson. I miss my mom, Ruth van Leeuwen, my first and greatest blog critic, and follower. She would have tried to learn podcasting technology if she could have found a 15-year-old from her church to teach her how to use a podcast player. She died around Thanksgiving in 2014. Gratefully, here you go, episode one and ninety-nine. Happy Thanksgiving.

Open Hearts 2018Health Hats: In this session, I’ll share some tape of an interview with Mike a few months before he died. Bob Doherty conducted that interview and some thoughts and stories from me. One day, Mike and I were sitting at the kitchen table, talking about dying and superpowers. And Mike thought that he and I had the same superpower. We both accept what is. Not the ‘life sucks, what’re you gonna do’ variety of acceptance, but the ‘yup, here is impending death, how can we live our best lives’ variety.

‘Yup, he died young. Young death happens a lot. You open your heart, and tragedy walks right in. What’s the alternative, closed heart? Not for me. So, let me set the stage for you. This recording happened on July 17th, 2002, at my 50th birthday party. We had the party in the Potato Barn in Schoharie County, New York. When you hear some of the audio, you’ll hear a lot of noise. I’m able to filter some of it out, but not all of it. So here we are at my 50th birthday party.

Love myself 2002Bob Doherty was interviewing Michael Funk. I’m sure you’ll be able to tell who is who.

Michael Funk: Yeah. I meant to just shoot questions, and we’ll just rap.

Bob Doherty: All right. Why don’t I ask you the same questions I want to ask other people. How did you meet this jamoke called Danny?

Michael Funk: I was going to school with his oldest son, Simon. I don’t know, a mutual friend introduced us and I went over to his place, decided that it seemed really comfortable and the type of environment that I hadn’t experienced before. I just wanted to hang out there. I didn’t really know Danny and Ann too well, I guess I met them on the first day. I just kinda came into the house and didn’t leave, and they were okay with that. It was never an issue about who’s this kid, why is he here all the time? Why is he eating all our food? So I just started eating all their food right from the start, and they just made me welcome. It was the first time I’d seen a nuclear family. I don’t want me to say this is a traditional nuclear family cause it’s not. It’s and very amazing and dynamic family, but they’re all about just bringing you in and giving you their love and trying to understand you’re trying to help you understand yourself. It was an environment I didn’t want to leave, and I didn’t have to. There you go.

Health Hats: I remember Mike coming to live with us. He just appeared, came home with my son Simon and he never left. We did go talk with his dad and suggested he come live with us. And his dad was fine with that. That was that. I can’t say it was always easy. Mike was always good to us, my wife and I, very polite, very considerate, very loving, but he was a crazy teenager, but he did his homework before he did his crazy stuff, which we really appreciated.

Bob Doherty: You had two awful go-arounds with cancer intervention recently. Then more bad news. Tough thing to take.

Michael Funk: My thing is it’s not awful. It’s not tough. I have a philosophy of life, that life just happens. And I don’t mean to say that I’m passive about it. But that is going to happen, and you got to make your peace with it. And then it’s like a letting go. I understand it. Sometimes I hate trying to explain it because it sounds simple. It sounds like I almost have developed it by not thinking about it, but tomorrow is going to happen regardless of what I do. I can be happy about it. I can prepare myself everything I can prepare myself to be. And those things now are like; I want to be a loving person. I want to be around the people I love. I want to be happy, which isn’t necessarily quantifiable. And so I expect these types of things, and I get them. I don’t need to; I don’t need $50,000 a year. I don’t need a college degree. I don’t need a car. I don’t need these possessions. I’ve got an amazing family that I can hug whenever I want. This isn’t stuff I grew up doing.

Bob Doherty: I had a strange interaction with Danny about a week ago. We were talking about you and your diagnosis. I said to Danny that I look for justice in the world. I want things the way I want them, the way I expect them to be. He quickly said to me, that’s your thing. I don’t bother with that. And he went right on. And you seem to have the same kind of thinking: you’re living and enjoying your life and not struggling with an idea of what ought to be. Did Danny play a part in that, or are you both just two peas in a pod?

Michael Funk: I think Danny played a type of role. Danny’s got the type of personality if you’re going to be really close to him, you have to love yourself to be comfortable around him. And when you get someone in your life that’s really important to you. You want to make sure you keep interacting with them. So, if there’s a part of me, that’s uncomfortable being around Danny, I’m going to be unhappy because I’m going to make sure I’m around Danny. So that was a challenge to me to make sure that I knew who I am. I know what I really want to do. I believe in it, and I can practice it because Danny’s going to challenge me if I’m doing something stupid. I used to drink and party all the time. And Danny would call me on that. It was just not like he would nag me about it, but it was upfront, he knew what was going on, and we would talk about it. So, I had to know what I was doing and start thinking about what I was doing. A difficult relationship but the most rewarding type. I had to be happy with myself to really enjoy Danny and my relationship perfectly. So, he pushed me to a certain position in my life where I had to make expectations of myself that were real and not just these secondary entertaining myself with these types of things. I had to love myself to enjoy our relationship.

He met a girl 2018Health Hats: Oh, man. That just makes me want to cry. Love myself. I remember when Mike was diagnosed with melanoma, we saw this ugly thing on his neck. We, I, knew it was bad. He had surgery to have it removed; some nodes came out, and a year of Interferon chemotherapy. Those were hard years for him. He felt like crap all the time. He was pretty freaked out. We were pretty freaked out after that, after the chemotherapy. Some time passed, and he pulled his life together after that, deciding to go to school, went to Geneseo in upstate NY, met a girl, and he was in love. It was wonderful. Then one day I got a call, ‘I’m numb on my right side.’ I thought, ‘Oh man, this isn’t good.’ Sure enough, he had a brain tumor, had surgery, and then he had a lung tumor and had surgery, then more brain tumors. I’m proud of us as a family. We pulled together and supported him and supported each other and coordinated his care. We had weekly phone calls where we would share about what’s been going on for the week and what are our upcoming challenges? What tests are coming up and doctor’s appointments and who’s going to take them and how are Mike and Betsy they feeling?

Birthday wishes for the old guy 2002Bob Doherty: What birthday wishes do you have for the old guy?

Michael Funk: I want what for him what he already has. Danny has everything. He loves his job. He loves his staff, has a great family. You don’t hear him complain. What do you do for somebody like that? What do you wish for someone who has everything? I wish for Danny tomorrow what he has today. He has the perfect existence right now. Yeah, he has some stresses, he deals with them and just keeps on going.

Spiritual health 2018Health Hats: Oh, Mike, I just love you. This morning. I reached out to Bob Doherty, gave him a call to get his take on the experience he had interviewing Mike and being part of Mike’s illness and death. Bob was my boss, my colleague, and my friend. He did the video of Mike at my 50th birthday party.

Health Hats: Bob, what was your experience of Mike and his passing?

Bob Doherty: As the diagnosis for Mike became clear and abysmal, it became traumatic for everyone concerned, including Mike and his girlfriend. Danny was the caretaker, guiding Mike and providing him with some basic stabilizing parenting and love in a very inclusive and full way. Mike had moved into his home, took guidance from him, and improved his life in very critical ways. He moved away from any debilitating behaviors. He was a very free-spirited, energized guy with a bright mind. And now he always felt great confidence about his thinking and his life. So, it was marvelous. He was an ideal fellow. But Danny contributed to his functionality very basically, and Ann and his boys. That was interesting. Shortly before he died, Danny had a 50th birthday, and I interviewed him on that birthday. Within weeks after that, I put together a little video, 30 minutes video, which the family treasured, I just reviewed it today. Now I’m approaching the anniversary of his death of many years, I was struck again by his philosophical wisdom for a person of his age and his condition, which is soon to die. It was clear that was the direction. He was enthusiastic about life. He was hopeful about the moment, appreciative of all around him. He had a view of the world that was an older man’s view, value. He didn’t mention property or money; he didn’t even mention sadness. He talked about connection, contribution, appreciation of his life as it is exactly. He valued connection with all around him, including his girlfriend. It was rather startling to hear that again from a young person so well-formed philosophically or grasping life and how we would all like to. I think we all struggle with life’s meaning and direction, and he has a meaning down, which was appreciating each other, without any overarching religious, philosophical commitment that was in any way jarring. He just understood and appreciated his own and other people’s lives. So I consider that value, the value of Danny van Leeuwen and what they bring to the world and shared. Mike, by the way, was a wayward adolescent that arrived at Danny’s house. He said, I just liked the environment, so I never left. Danny was okay with that. Makes sense. So, like a fairy tale, there is a young and vibrant, thinking, and a bright guy having gotten to a point in his life of satisfaction. I’m now 74 years old, and I’m getting closer to it, but I’m not quite where he was, which is greatly appreciate every day. It was wonderful to know him. And that was nice to experience that love is transferable. That’s special.

Lifetime warranty 2018Health Hats: So, some of the time, I think, Mike was just full of life. And some of the times, he just felt really miserable. He wrote a lot of poetry. Believe it or not, we had a lot of laughs. Some funny stuff happened. When we went to buy him a computer at Circuit City, this young salesperson wanted to sell them a lifetime warranty on the computer. Mike kept saying, ‘I don’t really want a lifetime warranty.’ The guy was young and determined. Mike finally said, I’ve got brain tumors, and I’m going to die in three months. I have no use for a lifetime warranty.’ Poor guy. The poor guy was mortified. We were hysterical. We appreciated that Mike was not the, ‘why me, oh my God, life is so unjust.’ He always felt, why not us? Why not him? Why not me? Why not? Whatever. I think it helped me when I got a diagnosis of Secondary Progressive Multiple Sclerosis. Mike and I both won a lottery we didn’t buy tickets for.

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Not personalizing death 2018Health Hats: So your wife Marianne died not that long after Mike died. I’m wondering about -, I know they’re very different experiences, but death is death. For not being a member of my immediate family, you were as involved in the experience of him being sick and dying as anybody. I’ve always wondered about how or if that may have affected how you experienced Marianne’s death.

Bob Doherty: Wow. I need to think a little more about it, but I think the experiences are identical in that death is death. Death is so stunning and final. My wife died from an aneurysm and it took 18 hours from the beginning of the event to her loss of life. It was quick, bang, tremendous instant change. But they were the same in that the ultimate result of grief and loss is an appreciation of what you experienced and being alive and connected to that person. And, in summary, is gratitude. And I have accomplished that with my wife, and with Mike. I, I was able to fortunate to never personalize the experience. Her death was her death. I didn’t wrap myself in cloth and ashes and feel sorry for myself. I was traumatized. I had to learn to live my life in an entirely different way. But somehow, I never felt resentful. And I watched Danny go through this process. He reached out for counseling help as Mike was sick and sicker. And I did the same within four days of her death. I was asking EAP for a referral to grief counseling, and I went to a group setting grief counseling. But throughout my experience, as heartbreaking as it was, and it was extremely heartbreaking, I never felt Danny shaking his fist at the sky or the gods or the world. And I didn’t either. So, there was a commonality there. We both didn’t personalize the loss as some injustice; we accepted life as it was going on. And we came very quickly to appreciate the power of the person that we love. So there was that commonality. I also, I had an initial feeling on my right side. How can people just say driving around and shopping? Don’t they know that the world stops, I felt that with Danny. I remember one day, shortly before Mike died, there he was just trying to do the best he could in all areas. And he told me he was sorry about not being as attentive at work as he had been. I think we were out in the hall, or there was a bench there, and we sat down. It was outside the hospital, and Danny cried. It was appropriate to cry and, we sat there, and he cried a little. I might’ve joined him with a little quiet tear. There were just two men together coping with life as life was taking us. And I remember Mike’s funeral, a particularly sad event because he was so fricking young and vital. But his contribution to life can be seen on that video. It’s remarkable that a young man, particularly a guy with some rejection and his family of origin, managed to accomplish at this young age. So that’s how it was. We’re appropriately sad at the moment. We didn’t blame the world for a tragic life. We managed the way we best could. Our best was pretty damn good. I don’t think there’s much more to be said about it.

Health Hats: This morning, I talked to Ann, my wife, thinking that now I have this mission of empowering people as they travel together towards best health. And I realized that health is physical, mental, and spiritual and that while Mike was dying, he got stronger and stronger spiritually. And that was fascinating to watch. Really, he got stronger mentally first because he wasn’t so strong mentally before he was sick. But then, in his last year, that philosophical, he got centered. That made a difference for all of us.

Bob Doherty: I think his accomplishments philosophically or spiritually were stunning. They were stunning. And I think it fulfilled both the true course of life, so what’s important. Still, I also believe from your Jewish intellectual tradition, and he was the exemplar, the star, the person who understands and produces within that understanding of communication to the world to those immediate to him, but the whole world. I think he represents your life’s direction, Danny. Just as you and I shared the quality of good services and rational management, we tried to manage in a humane way and didn’t ask people to do more than they should have or asked them to do the best they could. And that’s what Mike did. And that’s what you did from the moment you met him. And with my wife, my second wife, we were married about 22 years I never had any regrets. And your relationship with Mike, as far as I know, have no regrets. It was welcoming and on the positive side of human connection and growth.

Health Hats: Oh, man. Yeah. What to say?

Bob Doherty: You’re crying again? We know how to live!

Health Hats: Yeah. I wouldn’t have given this up for anything. It was wonderful. The whole thing was wonderful. Painful. Wonderful.

Bob Doherty: Yes. Life is wonderful. It’s got some rough edges that’s for sure. Yeah. But for those of us that try to walk the earth and make it a little better. We know how to live.

Health Hats: Buddy, thank you so much.

Bob Doherty: Oh, you’re more than welcome.

Health Hats: I love you.

Bob Doherty: I love you too, my friend.

Leave me a sign 2018Health Hats: Mike was a gift. I have to tell you one more story, a great story. Mike and I talked a lot about dying and what was it like, was there an afterlife? What would happen? He didn’t think there would be one, but he sure wondered. So, one day, we’re sitting there, and I say, ‘Mike, this is totally weird, but if after you die, you could leave me a sign. Oh, my God, that would just be fabulous.’ So, it was about, I don’t know, three months after he died. Probably a little longer. He died in November. This was probably in the spring, and we were doing this work on our front stoop. The stoop was a big block of cement that had tilted. And so my wife was redoing the cement and building it up so that it was level. I was her cement mixer, and she was the stone worker. When she got done, I cleaned everything up and washed everything down and took a fresh piece of plastic out of a bag, and covered the wet cement so it could cure overnight. In the morning, I took the plastic off the cement, and there was Mike’s guitar pick sitting on top of the cement. I don’t know what it means. What really happened? But it was cool. God, it was cool. I still have that pic. Oh goodness. All right, Mike, this one’s for you.

Reflection 2020Danny helped me love myself. I had to love myself to have a good relationship with him. That’s the most glorious thing anyone has ever said about me. Let’s celebrate gratefulness right now together. Connection in a pandemic: priceless. Onward.

Links in the show notes. I’m grateful to you who have the critical roles as listeners, readers, and watchers. Subscribe and contribute. If you like it, share it. See you around the block.

Comment and ask questions* at the comment section at the bottom of the show notes * on LinkedIn * via email * DM on Instagram, Twitter, TikTok to @healthhats

CreditsMusic

Music on intro, outro, proem, and reflection by permission from Joey van Leeuwen, Drummer, Composer, and Arranger, including Moe’s Blues for Proem and Reflection and Bill Evan’s Time Remembered for on-mic clips

Thanks to these fine people who inspire me every day: Simon, Leon, Oscar, and Ruben van Leeuwen, Ann Boland, Anica Madeo, Kate Gleason, and Jessica Conaway

LinksRelated podcasts and blogs

Best Health at End of Life

Best Spiritual Health, Dying

Grief in passing

I buy my hats at Salmagundi Boston. And my coffee from the Jennifer Stone Collective.

The post 21 Years Since Son, Mike Died. Superpower: Accepting What Is first appeared on Danny van Leeuwen Health Hats.

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Personal growth living with a chronic illness, sickle cell, the importance of open communication, building a supportive community, & advocating for oneself.

About the ShowWelcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this.

We respect Listeners, Watchers, and Readers. Show Notes at the end.

Watch on YouTubeRead NewsletterThe same content as the podcast but not a verbatim transcript. Could be a book chapter with images. Download the printable transcript here

ContentsTable of Contents

Toggle+ About the Show

Watch on YouTube
Read Newsletter
- - Contents
Episode
- Proem
- Podcast intro
- Four more years, a mother
- You mean I won’t get sickle cell?
- No lying in motherhood
- Harder on myself
- Treat us differently
- Where do they fit in the world?
- Call to action
- Moving on and building community
- Muslim community
- Healthcare Community
- Trust my team
- Ego-centered, patient-centered
- Speaking truth to power
- Makeup for the Emergency Room
- Intentional why
- You can’t read my mind?
- I’m not your caregiver. I’m your partner.
- End-of-life. It’s for real.
- Live below your means, cut out the noise
- Reflection
- Podcast Outro
- Please comment and ask questions
- Production Team
- Credits
- Inspired by and Grateful to
- Links and references
- Disclaimer
- Related podcasts
- Creative Commons Licensing EpisodeProemI’m delighted to reconnect virtually with my dear friend, Fatima. We last recorded several conversations, two with her mother, Esosa, in 2019 as part of the series on people with complex conditions transitioning from pediatric to adult medical care. The titles included Living a Happy Full Life, Good Listeners, Good Conclusions, and I’m Not Drug-Seeking. I’m in Pain. Becoming friends with Fatima has been one of the delights of my last decade. I especially value sharing our diverse experiences, finding many common cords (chords), leading to ongoing separate growth and development. From Fatima, I’ve dared to proudly introduce myself as a 2-legged cisgender old white man of privilege.

Four more years, a motherWhen we had the conversations in 2019, you were a mom, but it wasn’t about you being a mom. Now, you’ve been a mom for four more years, dealing with sickle cell and being part of the family unit. Your mom said it’s not just the person with the diagnosis; the whole family must manage. What are your thoughts about that now? You and your kids are getting older. Your son’s graduating from preschool. I can’t believe it. Anyway, what are your thoughts about that?

Fatima Muhammed-Ighile: She states that sickle cell is a family issue. These last few years, I’ve understood that more profoundly. My kids are now five and six. They ask questions, and there are times when they can now comprehend how my restrictions, based on when I feel sickle cell pain, affect their lives. So that’s required me to have discussions with them that, at times, I wish I could have delayed.

Health Hats: If I remember correctly, your daughter probably has the most challenging questions.

You mean I won’t get sickle cell?Image from https://www.kold.com/2021/01/28/federal-committee-recommends-more-research-care-patients-with-sickle-cell/

Fatima Muhammed-Ighile: It was a lazy Sunday afternoon, and she talked about when she gets older and has sickle cell. This is what she will do. I’m like, that’s not how that works. What do you mean when you get older? I have sickle cell. She said, you’re an adult, and you have sickle cell. So, when I’m an adult with sickle cell, I told her that you won’t have sickle cell when you grow up. She was so shocked by that. We looked at each other as if we had two heads, and she ran to the room and told her younger brother, guess what? We’re not going to have sickle cell when we’re older. Did you know that? I thought I was doing an excellent job explaining things to them.

I didn’t know they had internalized the fact. They thought they’d also have pain, sickness, and hospitalizations when they got older. They were excited about that, which made me sad. But then, after the sadness, mom guilt, and all the unhelpful feelings, I had to think back: okay, we need more conversations. Things are not landing as they should. And that was a moment for me to realize that we need to talk about this in doses. That was an eye-opener. That happened about 18 months ago.

No lying in motherhoodFatima Muhammed-Ighile: Right now, if I’m having pain and I said we’re going to do something, I have pain that day. I have to say no. That is hard for me because you and I discussed treating children not as objects but as actual human beings.

They are people. So, I’m not going to lie to my kid. However, I would be uncomfortable if she asked why that man wore high heels and lipstick. I’m not. I will not lie to you. That’s just mine and my husband’s ground rule. However uncomfortable we may feel, it’s their right. They have a right to be told the truth, the best we understand. They are little truth-tellers and force the truth out of you. I have to deal with those feelings of discomfort on my terms. So, with counseling and therapist journaling, it’s not their fault if I feel sad that they think it’s unfair that they can’t do something because I don’t feel good. That’s completely justifiable for their kids. It’s okay for them to be disappointed.

Harder on myselfHealth Hats: Are you harder on yourself than they are on you?

Fatima Muhammed-Ighile: They know I don’t lie to them, and I keep my word. They are very forgiving. It wouldn’t even cross their mind that I genuinely didn’t. They forget about it after the next act. But I still hold onto that feeling as a mom because this means so much to me. Like I know most parents, it’s their job, but we purposely set up our lives so that their needs can be taken care of at a moment’s notice, emotional and otherwise, so it’s very intentional. So, when I feel like I’m failing that, that hurts.

Image by Guillaume de Germain on UnSplash

Treat us differentlyHealth Hats: I remember back, and you can correct me if I remember this wrong, but I think back to when you and I worked together, and my grandkids were little. I remember conversing with you when I noticed that the grandkids treated me differently than Ann because they would just run along with her. She would have to be careful that they didn’t cross the street without looking, but with me, they would just stick and make sure that I didn’t cross the street without looking. I think that they got a sense of it was different. It wasn’t like it was any big deal. It’s just that Opa can’t chase them. It was an eye-opener to me that they would think about me so differently, And at first, I think I felt weird about it. Do they feel less free with me? And then I thought, no, maybe they’re three, but they got that something else is happening here, and they got to take care of Opa. And that was a good thing. So, you’re talking about them feeling disappointed, you feel like crap and so they can’t do, you guys can’t do what you might have had planned. Do you think their disappointment is okay? I’m disappointed. Okay, let’s move on. As opposed to, mom, you suck. I’m disappointed. It’s all your fault, Mom.

Fatima Muhammed-Ighile: I have noticed that they feel the need to go out of their way to help mommy out on the days they can see that I’m not doing well. Oh, Mommy, I’ll fill up your water. You need water. Remember what the doctor said? You need a lot of water. You have to stay hydrated. I had to tell my daughter once because if I do this for you and let you nap, will that mean you won’t ever have to go to the hospital again? I had to tell her I would still go to the hospital. There’s nothing that you can do or I can do. We can just try our best. But it’s a fact of life. It’s not that you didn’t let mommy take a nap. Now it’s never your fault that I go to hospital. That’s not how this is. I see she takes on much of that responsibility and burden. Although I appreciate that she’s compassionate and loving and wants to help, I don’t want her to put things on her shoulders that don’t belong in her tiny little shoulders,

Health Hats: It seems you don’t have that much control over that.

Fatima Muhammed-Ighile: Lie to me, Danny.

Where do they fit in the world?DALL·E-2023-10-21-14.25.17-Black-Muslim-woman-in-pain-with-two-young-children-hanging-on-in-the-style-of-a-graphic-nove

Fatima Muhammed-Ighile: I think you’re right. I’m making it bigger in my mind because they’re now at an age where they compare. I even heard them talking about who in their classes is rich and poor. Azeez and I just sat in silence in the living room. They didn’t know we were listening. What a fascinating conversation! How do you even know? It was very interesting. They’re starting to compare and contrast and trying to find where they fit in the world. In that sense, we always talk about how not everybody is the same and what God gives one person and doesn’t give the other. It has no bearing on your goodness or if you’re deserving. That’s not how that works. So, we talk about resources and money and who has or doesn’t have. If a child doesn’t have food or the best home, it doesn’t mean they’re not a good person. They’re not being punished for that. It’s just that our lives are different.

It hurts me to know that I might not do what they think other moms can or should do. But I don’t even think it’s gotten to that point yet. I don’t think they think some moms do this or some do that. I can show up to some school events, but some parents will never attend any school events because they’re working. And that’s okay, working. I don’t work. But that’s not everybody’s life, so I know I catastrophize their disappointment because of the pressures I put on myself. It still doesn’t necessarily lessen the guilt per se. But I have to move. I don’t want to drag myself or them down with guilt. It’s very unhelpful. It’s useful for collecting data, but how is that useful or helpful for anybody?

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Moving on and building communityHealth Hats: So, let’s change the subject. Back when we talked recorded before, one of the things that we talked about was building community. Since then, you’ve moved several times, and sometimes we talk because you’re suddenly in a different community. You have an experience in those communities where you must rebuild everything. Tell us a little about when you move and rebuild a community of support, whether it’s professional, personal, or child support. What have you learned from the difference? Because you’ve done it several times.

Fatima Muhammed-Ighile: Several times. And I am thankful for those times because sometimes you build a community with people, or maybe you do not. But then you get to move. I’ve learned from this scenario and can take that into my following scenario. One thing that has happened a lot this year is that I’ve shuffled many of my friends, and I feel like I’ve been shuffled out of some friend groups. I think that’s the nature of being 33. People have families and careers and must be reprioritized, and values are a huge difference. One thing, after having my heart crushed a couple of times and breaking up with a few friends over core values things, not like anyone did anything horrible, I’m starting to be able to sift through that a lot faster and more keenly.

One thing someone advised me because I’m a very kindhearted person. If I feel loyal to you, I am forever loyal to you, like you have to do something horrible for me to discard or leave you. Or if you’ve been good to me. That’s how I am generally speaking. My door’s open. You’re welcome to my home. That’s how I am, for better or worse. I’ve been learning that those who you go into community, it’s not everybody you go into community with that has to become your best friend or even a friend per se. It might be a quid pro quo: okay, I’m taking your kids, and they go to the same daycare.

We live around the area, pick them up, and drop them off. It doesn’t mean we have to braid each other’s hair and be best friends like they will be people for a reason, and then very few people for life. That’s a gift. I was setting that as the expectation and getting sad about it. Despondent. It’s unfair to ask anybody to put such a lifelong friendship sisterhood on people’s shoulders. So, I’m thankful for the moves and having to do it multiple times. Hopefully, we’ll be moving again at the end of the summer. Not far, but a new community. And we’re moving for the community because it’s closer to the hospitals.

Muslim communityImage by Hasan Almasi on UnSplash.

Fatima Muhammed-Ighile: Closer, it has a larger Muslim population. There are Muslim schools there. And as our kids get older, that’s very important to us. I’ve learned so much and am so thankful for the people along the way. It’s also taught me how to be a better friend and a community member without being controlling. You can be there for people, support people, and when they do dumb things, you just have to look at them, do the dumb thing they do, and be like, okay, cool. And just accept that. And I feel like not being friends with people makes it easier for me to have those boundaries.

But the community I built has been invaluable. There is no way I could have done it without the people who’ve helped me, or it wouldn’t have been as fun. It wouldn’t have been. As they’ve taught, the women have taught me so much, and I’m so thankful for them, even for basic homemaking skills that we no longer know. As a second daughter in a Nigerian household, I used to skirt those responsibilities. Oh, she can do it. My sister can do it. I don’t have to do it. And to my detriment in some ways. So, I’ve learned how to meal prep, what to freeze, and how to have a quick meal in a freezer bag because I prepped days before that. I’ve learned so much, and for those things, I’m thankful, and I feel I have to pay it back and be generous. I never thought my generosity had strings before, but it did.

It came with the expectation that now you have to take my advice or do this. Because I know best, I know so much in life. I’ve been here for three decades, so it’s obvious. I know so much. But I just understand that everyone’s life is different. No one owes me anything but the people who are there. Be thankful for it, appreciate it, and see how you can be there for others.

It’s so unique, too, like people who you would least expect it have stepped up to a plate where I’m like, wow, you’re going to babysit my child for a week. Because I’m in the hospital, who does that? So, some people have surprised me in amazing ways. So, I try to think about those positives within the negatives.

Healthcare CommunityDALL·E 2023-02-06 13.17.38 – Sculpture of Community based research in the style of Yoshitoshi Kanemaki

Health Hats: Another part of that community, though, is the healthcare community. So, in your case, much of your healthcare community happens around pain management. And it seems like that’s been like building that community has a silver lining, but what about that? You went from your Worcester community, where people knew you from a young age, and your mother helped build those relationships. Then you went to Florida, then to Texas, and there were if not mini disasters, they were significant disasters. How has that happened? So here you are, a woman of color, a Muslim, and somebody in severe pain. How’s that been in terms of building that kind of community?

Fatima Muhammed-Ighile: It’s been hell. I don’t appreciate it. I would rather not, but I’ve found that people tend to fall in line once you have a doctor who believes in and supports you. That’s what I’ve found. So I try to make sure one thing that has helped me is making sure that all my doctors are under the same healthcare system. I didn’t do that in Florida; I wasn’t even aware of it. That would be helpful. That was a disaster. There were miscommunications and the ability of doctors to do somewhat unethical things, but nobody else looked at their notes so they could. They didn’t care. I just became a number.

Trust my teamFatima Muhammed-Ighile: When I found a sickle cell team at the head of Dr. Nero. I’ve never actually met Dr. Nero. She’s a black woman. She’s a sickle cell specialist. But my hematologist is under her team. I can tell she has an impact because even in the ER if they know you are under her, they treat you differently. I don’t know how often she talked to them, lectured them, and told them about their lives. And the other thing that’s very helpful about Dallas is that the healthcare is super diverse. So, there are a lot of black doctors here, usually immigrants or Caribbean. There are a lot of Arab and Middle Eastern doctors, with white doctors in the minority. I don’t know if I have a white doctor. I don’t know. I don’t think so.

Health Hats: Wow, that’s different from Florida.

Fatima Muhammed-Ighile: Completely different from Orlando. Orlando was just like a walking, talking, hot mess disaster. They lived and breathed stereotypes. Not that Dallas is ideal, but it’s completely a step up. What’s more, they’re tied to the University of Texas, so there’s more prestige and more awareness of the latest research, and it seems like they’re all in communication with each other, which is completely helpful. One thing I found is that I am now meeting with a new set of doctors for a different specialty, and my demeanor towards them is that I tend to be a warm person when I first meet people, but I was completely cold. Finally, at the second meeting, I told them I knew I was coming off as cold because I didn’t trust them. Doctors, especially doctors in your field, and the lady asked, what can I do to earn your trust? You can tell me the truth when you don’t know something. Tell me you don’t know instead of telling me false information that I must find out later, it is false because that puts me on edge. Whenever you speak, I’m double-checking fact-checking as you speak. I’m writing things down. I don’t want to do that back and forth. So, when you don’t know, just tell me you don’t know.

Ego-centered, patient-centeredImage by Lia Bekyan on UnSplash

And she said thank you. I’ve also found that by sticking to the plan and by working the plan, you come up with the doctor, whether the pain plan or whatever, and going to appointments when I’m healthy. Doing the check-ins, doing all that, they’re, the doctors are a lot more receptive because they feel like you know about your care, although some still feel like they know everything. One doctor was arguing with me, and I was telling him my hemoglobin level is usually at 11. He’s the last few times. It looks like it’s by at eight or nine. I’m like, but it’s typically at 11. Then the next day, I told him, I was like, oh, why? It showed the last few months at eight and nine. I’ve been off Hydroxyurea, but if you look at when before I stopped Hydroxyurea, it’s at a 10 or 11. The female resident smiled. She was happy that I stood up to him. He was like the director of blah, blah, blah, who the hell knows. And then his face turned red. But that was suspicious to me. Why is that? Why are you upset? You’re more, you care more about being correct than about, let’s get to the bottom of this. Small discrepancy. So is the ego, is your ego going to be at the forefront of my healthcare? I don’t feel safe around that.

I just try to note the patient-centered doctors instead of ego-centered versus the ones that are not. It’s the same with the nurses, and I’m more open to requests for a different nurse. If you are shady or not receptive, please, I’ll have a different nurse.

And if you are upset that your director is wondering why you want to switch out? That’s your issue. That’s not my problem. I don’t care about your feelings. I care more about my life. Outside of that, I try to be highly polite and extremely respectful to the point where the nurses on the floor always say everybody wants me as a patient when I’m inpatient. Because it’s so easy and I do their job for them. All I do is call when they need medication, and that’s it. It’s very simple and straightforward. So, I just try to be as compliant and polite as possible. But I will not let you get away with crap. I’m going to let you know I’m watching you.

Speaking truth to powerHealth Hats: Okay, so this might not be appropriate, and if you don’t want me to include this, let me know. But one of the things that I reflect on when I reflect on my relationship with you, starting when we worked together in a challenging setting and then as we became friends, is that we’ve taught each other a lot about speaking truth to power. I’ve learned from you, you’ve learned from me, and it seems like the most challenging time to do that is when you feel like crap, right? Maybe it started when we were on the same team, and I was your boss, and you could say something to me. Then, I dealt with what I was dealing with: my boss. And we, as a team, dealt with how we would handle this difficult situation. And then, with our healthcare, it seems like a lot of what you have to do is speak truth to power. Am I wrong?

w4Fatima Muhammed-Ighile: No, you’re entirely correct. It’s not actually when I’m in pain; it’s easier to do, but it’s harder to do it politely and diplomatically because what I say and how I want to say it is entirely different than the more productive way to be. So, I try to make sure that I am not having when I’m not in the middle of the pain crisis, and I am touching base with a provider via email, via request, a phone call, meeting telehealth, or personal. I have the energy, to sum up the diplomatic so they can remember those other times when I did not have the strength to be diplomatic. But there are some doctors where I found that like the whole, oh hi, how are you? That’s not going to help you. It might be better in my case. I found that sometimes it’s better to be known as the angry black woman, but at least you know that she’s watching what you do, noting, and asking questions than being liked per se. I honestly could care less whether I’m liked, but I have to remember that it is easier. It’s better to catch with honey, blah, blah, blah. Better catch more beef, honey. But at the same time, I feel like I have to add a bit of that kick because I’m not playing, and that’s part of why I’ll have to ask my husband sometimes to take off work and come to this appointment with this particular provider. I’ve seen how I’m treated differently when they know multiple people are looking over their shoulders versus when there’s none, or it looks like you don’t have support. I can speak very comfortably about my hemoglobin, or I can speak in an educational way about my numbers, and I know them. In a way, it’s empowering, but it also makes me sad because why do you have to perceive me in a particular light to be given the healthcare that is my right, that I’m paying for? What are you talking about? So, it’s a double-edged sword and a line of respectability politics, which is like a different conversation.

Makeup for the Emergency RoomHealth Hats: I remember your phone call, and when you were in Orlando, you said, I have to put makeup on to go to the emergency room. I can’t tell you how much that freaked me out, but it was so upsetting.

Fatima Muhammed-Ighile: Yeah. They won’t believe you. Human beings swear it’s other people. It’s not me. That doesn’t work for me. It works on others. It’s having to dress appropriately, make sure you smell okay, or jamming my fat fluffed finger during my pregnancy into a ring that was way too tight for me because of how I’m treated. It’s different, especially in a place like Orlando, where there wasn’t that kind of thing; it was just a hot mess. But yeah, I’m learning to play the game. In that sense, again, like with community building, I feel like I’ve gotten better at reading doctors quickly, more quickly, and they also get freaked out when you’ve looked them up beforehand.

Health Hats: I’ve experienced that too.

Fatima Muhammed-Ighile: Yeah, they don’t like it per se.

Intentional whyHealth Hats: Okay, what should we have talked about that we haven’t? Thinking about that, what we’re doing is following up many years after our previous conversation about this stuff. So, thinking about our listeners who are, what have you, what else do you think you’ve learned in managing since 2018 or 19, whenever that was?

Fatima Muhammed-Ighile: Two things. One, I had to. I got very clear on what I wanted in this life because my time, resources, and energy are limited. Still, sickle cell, especially at my young age, made it extremely clear that it’s very limited. So, I had to be very clear about what I wanted and why. I couldn’t do it all or do it all in the way I imagined before I started motherhood and being a wife. And, in terms of looking at careers and going back to school, I’m trying to be very intentional with what I do, what I put my energy into, and what I don’t, hence cutting off a lot of older people from my past were rearranging people in boxes or reprioritizing what matters in my life because of the energy, time, and health. I belong to, like my husband my kids, and everything else has become secondary. And some people are not even on the map, and that’s okay. And I don’t feel guilty about that. It’s priorities. It’s not that they’re wrong, evil, or mean, or it’s not even about that. It’s just about what is needed in the season of my life.

You can’t read my mind?Image by Andrae Ricketts on UnSplash

Fatima Muhammed-Ighile: And the other thing I had to do is, I think, I don’t know if we spoke about this when I was talking to my mom, we were talking to my mom and me. So, my mom has backed out of my care in a sense. I still talk to her and ask questions, but my husband has stepped into that role, and whereas my mom has been studying, bless God, bless him, because my mom has been studying and learning about this information for decades, and she is my mother. So, she knows me in and out and has a fantastic memory. I did and continue to put unrealistic expectations on my husband sometimes. I had to learn how to communicate to ask for what I wanted. Because I sometimes didn’t know. Why am I upset for unfulfilled needs that I don’t even know what the hell they are? That sounds strange.

Health Hats: No, I get it. I find the same thing with Ann. She loves and knows me, but she can’t read my mind.

Fatima Muhammed-Ighile: Exactly. Nobody can. It’s a right. It’s wholly unfair at the moment, you don’t know. I didn’t know that’s what I was doing, asking for the impossible. So again, it required me to go inward. Becoming, what do I want? What do we need? And then what? If I might want it but it’s impossible, could I be okay with that? And can I get that elsewhere? So, I’ve joined a sickle cell support group, so I feel like I needed three new avenues to replace the one job my mom was doing.

It was a lot of emotional labor, thinking, and physical. I am utterly thankful for and appreciate it now, but I had to clarify my needs. How do you get them? It’s my responsibility to get them fulfilled. It’s my job to ask for it, figure out how to get it right, and put it all on one person’s completely deranged.

I’m not your caregiver. I’m your partner.Health Hats: It’s complicated. I think we’ve talked about this. There was a time, I don’t know how long ago this was, but I was just being a jerk to Ann. I just knew I was short with her, and she didn’t deserve it, and I didn’t know why I was doing this. It’s not like she did anything. I realized that sometimes I need a caregiver, and I wasn’t ready to admit that to myself then. And then, I said, oh honey, I’m sorry I’ve been such a jerk. She got distraught with me for the first time, and she said, I am not your caregiver. I’m your partner. I had gone through all this stuff and told it in a way. It sounds like your daughter. I had no idea. I had the wrong image of everything and was just wrapped up in feeling sorry for myself. Nothing wrong with feeling sorry for myself for a few minutes. What the heck? But I don’t know.

Fatima Muhammed-Ighile: Did you feel like you got more than what you even anticipated by having that conversation?

End-of-life. It’s for real.Health Hats: Yes. Then, what came out was that we were doing our end-of-life stuff because we’re old, and you do your end-of-life stuff. I was full of, whatever, I want to do it at home and she said, I’m sorry, I can’t promise that. I don’t know what it’s going to entail. I might want to do it, but I might not be able to do it. It’s sobering. What am I expecting from my family? I had some uncomfortable months; it was like, okay, that’s reasonable. And that’s what I love about her is she’s honest about it,

Fatima Muhammed-Ighile: But that she can do something. You know it’s for real. I love that. That’s such an excellent quality to have. She’d instead tell you the truth.

Health Hats: I don’t want her to burn herself out. Yeah. I know you don’t want Azeez to burn himself out. Your kids need him. Yeah. Sometimes, it’s hard not to be self-centered. I just am.

Live below your means, cut out the noiseImage by Yohan Marion on UnSplash

Fatima Muhammed-Ighile: But even, I feel like, again, this is where I had to cut out the noise for myself. I have a disability, and even if I work, we don’t know for how long or in what capacity. So, we live our lives based on one income, and we have other sources of income like real estate and other things. But I remember, one of my friends before, my ex-friend before I cut her off, she said recently, it just seems like you become so money hungry and everything’s about money and investments and this, and I just, in my head, laughed so hard. Like, I laughed out loud. I was like, do you know what’s at stake? Like you have a healthy body and luxury, we live beneath our means, right? This is for my kids, for my husband. So, they’re not stuck, and we’re not in a desperate situation. Are you going to pay my mortgage if I cannot? No, you’re not even going to be here. You’ll be blowing in the wind somewhere, as you should be. So, you have no right to speak on what I don’t do or how my life goes or doesn’t go. I feel like once you get clarity on what you want, it’s so much easier to tune out the noise and kind of laugh at it because you know your why, you know what you’re doing and why you’re doing what you’re doing, And it did make me sad that as a friend you couldn’t understand that. But again, I’m like, it’s you because you won’t do it. You’re not going to pay my kids’ school fees if needed. So, you don’t get a say, but sometimes, getting that clarity can be sobering. Those difficult conversations can be tricky, like the ones I have regularly with my husband. What if I need care earlier than later, or do we have to buy these? Still, it’s such a freedom to know even if we are working towards something, it doesn’t necessarily go. I’ll be damned if I don’t look at myself and look at my kids and say that I did everything I could think of. I did my best for you physically in planning for your future. I did my best. So, if it all goes to shit, I can say, at least I can look at myself in the mirror and look at you without guilt and say that I did my best and did what I knew to do. It’s hard and uncomfortable, but it’s so liberating to me. I don’t like lies. It’s so I can’t do it. It’s exhausting. Because you’re contouring your body and life to something that’s not even true.

Health Hats: This is great. Thank you.

Fatima Muhammed-Ighile: Thank you, Danny.

ReflectionImage by Nick Fewings on UnSplash

This conversation with Fatima provides valuable insights into the challenges and personal growth of living with a chronic illness, particularly sickle cell disease. Fatima’s journey highlights the importance of open communication, building a supportive community, and advocating for one’s needs in various aspects of life. Her commitment to honesty and self-advocacy serves as an inspiration for others facing similar challenges.

I will never know what it feels like to be a Muslim woman of color seeking pain relief in an ego-centered, widget processing setting. I’ll never know what it feels like to be a parent of young children staring down my mortality daily. However, hearing these experiences in real-time and stories after the fact informs my consulting, advocacy, and leadership. Grateful only begins to express my feelings towards Fatima.

Podcast OutroI host, write, edit, engineer, and produce Health Hats, the Podcast, with assistance from Kayla Nelson and three van Leeuwens, Joey, Leon, and Oscar. I play Bari Sax on some episodes alone or with the Lechuga Fresca Latin Band. I buy my hats at Salmagundi Boston. I’m grateful to you, who have the most critical roles as listeners, readers, and watchers. See the show notes, previous podcasts, and other resources through my website, www.health-hats.com, and YouTube channel. Please subscribe and contribute. If you like it, share it. See you around the block.

Please comment and ask questions* at the comment section at the bottom of the show notes * on LinkedIn * via email * YouTube channel * DM on Instagram, Twitter, Mastadon to @healthhats

Production TeamWeb and Social Media Coach, Dissemination Kayla Nelson @lifeoflesion

Leon van Leeuwen edits the article-grade transcript.

Oscar van Leeuwen edits the video

CreditsMusic

Music between sections Danny van Leeuwen on Bari Sax

Images

Sickle cell Image from https://www.kold.com/2021/01/28/federal-committee-recommends-more-research-care-patients-with-sickle-cell/

Person and toddler Image by Guillaume de Germain on UnSplash

Muslim woman with two children. Image created in DALL.E

Women in headscarves Image by Hasan Almasi on UnSplash.

Community statue Image created on DALL.E

Ego-centric Image by Lia Bekyan on UnSplash

Image from YouTube video by Fatima https://youtu.be/2Ql2NgnZ_Ok?si=ont_MhFWNHFooUJQ

Mother and babe Image by Andrae Ricketts on UnSplash

Cut the noise Image by Yohan Marion on UnSplash

Gratitude Image by Nick Fewings on UnSplash

Inspired by and Grateful toMary Fam, Catherine Munyua, Maggie “Holly” Jawlowski, Mary Bentley LaMar, Bridget Reynolds

Links and referencesFatima’s Thriving with Sickle Cell series https://youtu.be/2Ql2NgnZ_Ok?si=BkSnEb3aUGUdpAws

Related podcasts

Living a Happy, Full Life

Good listeners. Good conclusions.

I’m not drug-seeking. I’m in pain.

Creative Commons LicensingThe material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs, and use follows their guidelines.

The post Balancing Motherhood, Community, Trust, Money, & Sickle Cell first appeared on Danny van Leeuwen Health Hats.

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Day starts with angst, leading to screen-free day, reservoir walk, visit to farm stand, reading real book. Revived with renewed sense of gratitude & well-being.

We respect Listeners, Watchers, and Readers. Show Notes at the end.

Watch on YouTubeNone today.

Read NewsletterThe same content as the podcast, but not a verbatim transcript. Could be a book chapter with images. download the printable transcript here

ContentsTable of Contents

Toggle* Watch on YouTube * Read Newsletter + - Contents * Episode + Proem + Podcast intro + Screen-free day + Walking a mile around the Res + Farm stand + Call to action + Back home + Day’s end + Reflection + Podcast Outro * Episode Notes + Production Team + Other Credits + Disclaimer + Related podcasts + Creative Commons Licensing EpisodeProemJoJo and Danny selfie

Good morning. I’m sitting on my porch with my dog, Jojo, who’s now coming up to sit on my lap. The sun is shining. We live on a busy street, so you’ll hear many of those noises. I didn’t sleep that well last night. I had more angst than I’ve had in a long time. And my angst was about, oh, I’m doing so much, oh goodness, what is that, a cardinal, that I’m doing so much, I’m so busy, I’m trying so many new things, why can’t I settle, do I have ADHD, just worry, worry, worry, worry. I haven’t had this kind of worry in a long time, not since I’ve been working or…

Screen-free dayI finally got some sleep, woke up, and decided that everything I was doing was fun, that I was my master, and that I would have a screen-free day. So… It’s already been a little bit of a challenge. I had to text my sister. She wanted to have dinner tonight. I guess that was just a second, and I listened to music on my phone, but I don’t think that counts. My wife, the dog, and I will take a walk. I’m going to read an actual book instead of a Kindle. So, I’ll check in as the day goes on and let you know how it’s going.

Walking a mile around the ResArlington Reservoir image by Danny

Hear that sound? That’s the sound of the water going out of the Arlington Reservoir. The Arlington Reservoir is the secondary water source for where we

Image of Danny and JoJo by Danny

live in case our primary water source goes bad. I love that we have this. We’re walking around it. It’s about not quite a mile. See how I do.

Arlington Reservoir image by Danny. Okay, I’m about three-quarters of the way around the reservation. It’s really low. I wonder why because we’ve had a lot of rain. I’m still plugging away, going kind of slow. We’ve seen some bird watchers who identified some yellow bottom warblers, and then I saw a woodpecker on my own, and of course, there’s a ton of squirrels, which the dog sees. There are a lot of dogs. So far, I’ve been okay. I think I will be thoroughly exhausted when we get back to the car, but we’re three-quarters of the way there. So that’s good. It’s a good day. It’s a good day to be able to walk that far. The leaves are beginning to change. But not too much. Hello. Okay. I see a gate here. It’s open. I was thinking. I don’t know if I could go around the gate. There’s a beach path, but it looks narrow.

What a beautiful day. It’s so sunny. God! It’s supposed to be that eclipse, but I’m not here, so I won’t see it. But since I’m not doing screen time today, I have to wait till tomorrow to go on YouTube and see it. Anyway… Ooh, I’m fading. I can just feel it. Oh, my goodness. I’m going to have to sit at the next place to sit. Unless I’m, I don’t think I can see our car, so I guess I can keep walking.

Farm standWe stopped at a farm stand to see what good stuff we could find. I’m roaming around the farm store. Anne’s looking at the vegetables. I pick out some garlic. I used it on some fish stew I made while she was in Santa Fe with her sisters. Also, get some pretzels, fresh pasta, and spices. Ann does most all the shopping. I go to the weekly farmer’s market whenever I can. I also order and cook all the meat from our meat share collective. Ann eats little meat but does eat fish, cheese, eggs, and butter, which I get from the Walden Farm Collective. I sure do appreciate all she does for us.

Yeah, thank you. It’s from Mahogany Mamas receiving a complement on my T-shirt. Just there, it’s, it’s an online store. Yeah, I have another one. I have a couple of them. They’re soft, and I get a lot of comments. My shirt says, Drink water, Love hard, Fight racism—many people like that.

How’s our popcorn supply? Is that what it is? Okay, well. Funny. These pretzels. Alright, here. Get one of these too. I’m really… It shouldn’t take me anywhere what I do. Like you. Alright. I’m stopping now. I’m buying too much stuff. You shouldn’t have brought me. Oh, those are pretty the potatoes. There you go. Wow. And it’s a good shirt, so we’re aligned, Okay.

That was the Lexington Farm Stand.

Visit health-hats.com/support for ways to contribute. Choose monthly subscription with bonus content, Zoom meetings with me and others, personal Bari Sax MP3s, coaching sessions, and more.

Back homeImage taken by Jacky

I made a nice omelet for my wife for lunch. I don’t usually cook. I certainly don’t cook my wife breakfast very often. I mean lunch very often. But this time, I did it with sharp cheddar and spinach. Nice omelet. And I’m reading a book. I’m not reading a book on Kindle, which I have been. By Kerry Washington, I can’t remember the name of it. But, um, I am reading a paper book: Swoosh, the unauthorized story of Nike and the men who played there.

Day’s endOkay, it’s six in the evening. We went out to dinner with my sister, which we usually do on Saturday nights. I feel like reading a whodunit. I haven’t enjoyed all the books I have, the physical books, so far. Or, no, I can’t read all day. That’s the difference. I can’t read them all day. So, how has it been different today? With no screen. Well, what I would be doing on a Saturday night is watching and catching up on college football.

ReflectionSo, no screen time. I’m not going to do that. Or I would be catching up on social media.

It has been good. It has been good. It’s been very restful. I’m tired, and I took a nap and, you know, could have taken a couple more. Which, you know. Nothing is wrong with that, but my eyes are not as fatigued, which is good. My eyes, oh, by the way, I’m thinking about having the eye surgery again. We’ll see. I’m going back to the surgeon next week, and I’ll talk to him.

So, this has been different. Occasionally, I chat with you guys. And, uh, no script. I am not connected to the computer. I’m with my fancy-dancy little, very fancy little Recorder. I have two of these lapel recorders. So, it’s fun. Anyway, I highly recommend taking breaks when you can take breaks and having a screen-free day.

It’s sure strange. My sister asked me, if I was, how many days I would do it. And I could not imagine more than one day. Oh my god, I’d be behind on so many things. I already have 110 emails to go through tomorrow. But anyway, it’s been fun and good. It’s the right thing to do. Maybe I’ll sleep better tonight. That’d be good. All right. Take care. Bye.

Podcast OutroI host, write, edit, engineer, and produce Health Hats, the Podcast with assistance from Kayla Nelson and three van Leeuwen’s, Joey, Leon, and Oscar. I play bari sax on some episodes alone or with the Lechuga Fresca Latin Band. I buy my hats at Salmagundi Boston. I’m grateful to you, who have the most critical roles as listeners, readers, and watchers. See the show notes, previous podcasts, and other resources through my website, www.health-hats.com, and YouTube channel. Please subscribe and contribute. If you like it, share it. See you around the block.

Episode NotesPlease comment and ask questions

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, Twitter, Mastadon to @healthhats

Production TeamWeb and Social Media Coach, Dissemination Kayla Nelson @lifeoflesion

Leon and Oscar van Leeuwen edit

Music on intro and outro by permission from Joey van Leeuwen, Drummer, Composer, and Arranger including Moe’s Blues for Proem and Reflection

Other CreditsT shirt by Mahogany Mommies check them out

Images

Vulture Couple by Rich Rieger used with permission

Woman and clown by Diana Feil on Unsplash

Thumbnail created by Kayla Nelson

Image of Danny and Ann by Jacky

Selfie of Danny and JoJo

Image of Arlington Reservoir by Danny

Inspired by and grateful to Ame Sanders, Kayla Nelson, Ann Boland, and JoJo

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Table of Contents Toggle About the ShowWatch on YouTubeRead NewsletterContentsEpisodePodcast introOn-micSeeking consultationMastermind communitiesBeehiveMusic, of courseDouble visionEpisode NotesProduction TeamOther CreditsDisclaimerSponsored by AbridgeLinksRelated podcastsCreative Commons Licensing

Episode Podcast intro Welcome to Health Hats, the Podcast. I'm Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this. On-mic Welcome to this second bonus episode for Health Hats, the Podcast subscribers and patrons. These on-mic bonus episodes reflect on my writing, recording, and producing adventures. On-mic means just me extemporaneously. On-mic is challenging for me as I prefer to write and read a script, but then it looks like I’m reading. I’ve gotten anti-glare glasses, so my glasses don’t reflect. I’m trying out a new feature today with this bonus episode where the app rejiggers my eyes, so it looks like I’m looking at the camera. How does it look? Seeking consultation Lately, I have focused on improving my video editing skills, like transitions between scenes, use of images when I don’t have or don’t want to use video, and settling on the fewest possible video editing apps. A couple of months ago, I used six apps, Zoom (to record the call), Descript (for transcription), Shotcut and DaVinci Resolve (for video editing), and Audacity and Auphonic (for audio editing). Steve Heatherington, of The Alpaca Tribe Podcast fame, counsels me on efficient audio and video editing workflow. Last episode, I used three, Descript, Audacity, and Auphonic. Progress.

I just engaged Julia Higgins, a freelance marketing professional, to help me integrate my business plan, website, and use of social media. I’ll put a copy of my business in the show notes. I’ve never really cared about how many followers I have, but now I want to grow my paid subscribers and patrons to build my production team. Also, my wife retired, so I’d like the podcast to be more self-supporting. Reviewing my mission, vision, and audience periodically helps me stay fresh, engaged, and relevant.

I can’t overstate the joy of working with my grandsons on this podcast. One coaches me in video editing; the other takes the first pass at editing audio transcripts into newsletters. We have several years of mutual warm criticism that greases the process considerably. Mastermind communities I still participate in a weekly Sunday call with other podcasters. We’ve Zoomed since 2018 as a team at Seth Godin and Alex DePalma’s second Podcasting course. Steve Heatherington teaches that course now. I host a couple of mastermind groups. Reckoning with various podcasts with different subjects (Alpacas, Hansel, and Gretel fairytale, secondary education, environmental educator, single life,

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About McLean Hospital. Referrals, COVID impact, capacity, stigma. Still need more resources & shift towards treating mental health on par with physical health.

We respect Listeners, Watchers, and Readers. Show Notes at the end.

Watch on YouTubeReadThe same content as the podcast, but not a verbatim transcript. A newsletter-like version with images. Could be a book chapter. download the printable transcript here

ContentsProem.. 1

Podcast intro 01:49. 2

Health is fragile 02:41. 2

Leadership at McLean’s Hospital 04:08. 2

Levels of care 05:12. 2

Massachusetts Child Psychiatry Access Project (MCPAP) 07:04. 3

Supporting Primary Care 09:41. 3

Mental illness and Covid 11:59. 4

Capacity – space, and staff 13:28. 4

Using Peer Experts – lived experience 16:12. 5

A word from our sponsor, Abridge 17:56. 5

Call to action 18:39. 5

Coalitions and partnerships 20:26. 5

Academics, research, advisory panels 24:43. 7

Stigma 27:13. 7

Level the playing field between physical and mental health 30:07. 8

Reflection. 8

Podcast Outro 33:49 9

EpisodeProemPhoto by razvan-mirel-xhYhjMIfsq8-unsplash

Continuing the series spiral with emerging adults with mental illness at the center, along the outbound curve, we experienced a parent, a high school teacher, primary care and emergency doctors, and community services. Now we arrive at mental health providers in the person of Michael Macht Greenberg, who administers an integrated system of mental health medical services, McLean Hospital, of the preeminent healthcare system, Mass General Brigham’s Hospital. I met Michael working together at Boston Children’s Hospital. Michael was the administrative director of the Department of Medicine, and I led the patient/family experience initiative. We both left Boston Children’s more than ten years ago. As circumstances allow, we still meet for coffee at least quarterly, in person or virtually. Michael’s low-key presentation belies his passion and compassion for emerging adults and people with mental illness.

Podcast intro 01:49Photo by Diana Feil on Unsplash

Welcome to Health Hats, the Podcast. I’m Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all of this.

Like what you’re reading, hearing, or watching? Go to my web page https://health-hats.com/support to choose a method of support that suits you. Thank you.

Health is fragile 02:41Health Hats: Michael, thank you so much for joining us. I appreciate it. I love seeing you. This is different from our usual coffee at Pete’s.

Michael Macht Greenberg: Always good to be with you. Thanks for asking to chat.

Health Hats: Yeah. When did you first realize health was fragile?

Michael Macht Greenberg: Wow. As a kid growing up, when you start losing people, grandparents, and great-grandparents, you start realizing you can lose people. Those people who have been important in your life aren’t around anymore. Fortunately, I am a healthy guy, and my experience with fragile health is limited. I’m fortunate that, with limited exception, that hasn’t been too dramatic or traumatic. But while growing up and realizing the people you love aren’t around forever, that gives you a thought about how important life is.

Leadership at McLean’s Hospital 04:08Health Hats: Thank you. The reason that we’re talking is that you’re a director of an adolescent mental health system. Could you tell us about what you do?

Michael Macht Greenberg: Sure. I work at McLean Hospital, a private psychiatric hospital, part of the Mass General Brigham system. My roles at McLean include Senior Director for Child and Adolescent Psychiatry. I’m also one of the Interim Associate Chief Operating Officers at McLean. So, I have a role specifically related to children, youth, and families and a position regarding the hospital’s executive leadership.

Levels of care 05:12Health Hats: Are the services you provide inpatient? Are they inpatient and outpatient? What’s the array?

Michael Macht Greenberg: McLean has an extensive range within the child and adolescent division. We have two inpatient units, probably six or eight residential treatment units of various types, and four or five partial hospital day programs. Our outpatient clinic provides what you might think of as typical outpatient care, but there are also subspecialty components, including neuropsychological testing. We have two licensed special education schools. One is a regular high school for kids with emotional problems that impair their ability to participate in education in a typical school setting effectively. We also have a licensed school for kids who are on the autism spectrum. Our school consultation service provides education and outreach to several school districts across Massachusetts. I have to think if I’ve left anything out. We’re trying to meet folks where they are and provide services at the level that people need. So, we have a wide array of care.

Massachusetts Child Psychiatry Access Project (MCPAP) 07:04Health Hats: How do people find you? Do they get referred by primary care physicians? Do they get referred by community counselors or psychiatrists? Is there an emergency room that you have or have access to?

Michael Macht Greenberg: Folks get to us from various avenues. It can be everything from Google and people searching the internet to see our services. We have an extensive network of coordinated care with primary care doctors. You reminded me. In addition to all those other services we mentioned, McLean Hospital is part of the Massachusetts Child Psychiatry Access Project or MCPAP. That’s a consortium of hospitals across Massachusetts that provide consultation and referral to many primary care doctors across Massachusetts. So, you can get to us from the internet.

Health Hats: Wait a minute. Is that referral meaning that people are patients at McClean, and then there’s a referral to primary care that’s comfortable managing?

Michael Macht Greenberg: Typically, the other way, if I’m a primary care doctor and I have a youngster with a psychiatric issue, and I want to consult with the child psychiatrist about what medication might be appropriate, what clinical services might be indicated, and if I sign up to be part of the MCPAP network, I can reach out according to the protocol we have. And within about 30 minutes or an hour, I’ll be on the phone with a child psychiatrist, at least having an initial chat about what it is that’s on my mind. Then we can schedule face-to-face consultations with kids. Still, we support that primary care practice in understanding what resources, not exclusively within McLean but across the whole community, you might refer to if you’re looking for a therapist.

Supporting Primary Care 09:41Health Hats: I told you before we started recording that I had interviewed somebody who was the Chief Medical Officer of a state Medicaid program. He was a primary care physician interested in behavioral health and young people. One of the things that he talked about was that these are my words, not his. There’s a cohort of primary care physicians comfortable with behavioral health issues and then seeking advice. Then some are at sea. It’s not their wheelhouse. So, he spent time in his role trying to increase the proportion of primary care physicians that were comfortable keeping young people and treating them with advice. His challenge was finding advice. He didn’t talk about a network as you just spoke about.

Michael Macht Greenberg: It would be interesting for this individual to become more familiar with something like MCAP. The other exciting news is that other States have implemented the model of MCAP. I don’t know which state this individual represented, but it is a transferrable model to other areas. The MCAP design is to avoid taking over care right from the primary care doctor, the pediatrician. For that purpose, we want to help primary care doctors retain patients in their practice with confidence that they can take care of them appropriately and a sense of not being alone, that they can reach out and talk with somebody and get advice. It is purely for consultation.

Mental Illness and Covid 11:59Health Hats: You and I have talked before, and it comes up with almost everybody I speak with, either the reality or the perception of an explosion in young adults, emerging adults, whatever we want to call them. An increasing need that was already pressing. But then covid came. The challenges of Covid made it much worse. Is that something you guys are dealing with?

Michael Macht Greenberg: Oh, absolutely. I know we will talk more specifically about kids and young adults. There was a strong need for mental health services before the pandemic, and indeed, as the pandemic has continued, we think we’re getting the better of it. We are seeing absolutely an uptick in needs and referrals. We see it at McLean Hospital across all age groups. These have been tough years for folks of all ages. So, the factors that have made it difficult have had a meaningful impact on children and families.

Capacity – space, and staff 13:28Health Hats: So, regarding capacity, there’s space and staff. I’m sure you know of more critical factors than space and staff, but those are the ones that I’m aware of. I remember that at one point, you and I talked about how you had added beds or were adding beds. Then you still had an imposing waiting list. Is that something you’re in the middle of?

Michael Macht Greenberg: Sure. So, a couple of things we had throughout the pandemic at McLean Hospital have an additional 100 inpatient beds. First, an additional adult inpatient opened on the Belmont campus, and then three inpatient units opened at a new site in Middleborough, Massachusetts. We already had a presence in Middleborough. But then we took on another building and opened three more units, two for adults and one for teenagers and kids aged 13 to 18. So, over the last couple of years, the aggregate of that has been 100 beds. And yes, it has the space. It has the staff. And it’s being able to have the money to pay staff, the increasing wages that are necessary and appropriate, but also a result of a very tight labor market. So, there’s a lot of competition for recruiting, and having the right staff is expensive. It becomes a challenge. A challenge to make sure that you are running those beds in the safest, most thoughtful way to have the staff do that. Sometimes we have beds that we’re unable to open because we don’t have enough nurses or doctors to take care of all those patients. It’s a lot of effort. It’s a constant, constant challenge we’re working on.

Using Peer Experts – lived experience 16:12Health Hats: Do you have peer support as staff, people with training, or people with lived experience? Is that part of your staffing, or is that more of a community-based thing?

Michael Macht Greenberg: All of us share the need for mental healthcare. All of us in the community must be attentive to our emotional well-being and take good care of ourselves and each other. Many of us have some lived experience of being in therapy or needing treatment or whatnot. As a formal part of our recruitment process, we don’t have the notion that we are recruiting people who have lived experience in that way. We’re looking for people who are trained, empathic and committed to doing an excellent job. Several folks within our staff population have some lived experience. But we typically do not recruit people because we’re looking for folks with mental health histories. There are resources available for folks. And we can help them find those peer support groups, which can be very important. But we find that a valuable addition to the staff we hire and the qualities we look for in the people we recruit.

A word from our sponsor, Abridge 17:56Now a word about our sponsor, ABridge. Record your healthcare conversations with doctors and other clinicians with ABridge. Push the big pink button and record. Read the transcript or the Apple app store or Google Play store. Let me know how it went.

Call to action 18:39health-hats.com/support

I need help. I’ve expanded my podcast this year to include video, and costs have surged to $15,000 annually, while each episode takes 30 to 40 hours to produce. With growing content and shrinking bandwidth, I need support to keep creating without impacting our retirement funds. As I look towards the next 5-10 years, I’m building a production team of emerging adults to carry this project forward. This succession planning requires resources.

But here’s the deal: you can help. Visit health-hats.com/support for ways to contribute. Best option? Patreon offers a monthly subscription with bonus content, Zoom meetings with me and fellow contributors, personal Bari Sax MP3s, coaching sessions, and more. Occasional donations are welcome, and you can still subscribe for free to enjoy bonus episodes. You can also recommend us through email, social media, or postcard – postage on us! Visit health-hats.com/support. Your support is deeply appreciated. Thank you.

Coalitions and partnerships 20:26Health Hats: You’re talking about the collaboration of this network with primary care. Is there a similar network integrating all the different needs that people and families have? Collaboration is the key to success, like the public health of mental illness. You and I met at Boston Children’s Hospital, where you were the administrative lead for the Department of Medicine. Both of us were active in building internal or external coalitions to accomplish the mission we were charged with or brought into. How about those coalitions with the community? It seems like it’s tough because while you are local, in that you’re in Massachusetts, and with a particular health system, you’re also well known. People come from and go to a widespread area geographically; building coalitions that widely can be a lot more challenging.

Michael Macht Greenberg: McLean Hospital is a well-known institution with many folks from Massachusetts. We are based in Massachusetts, although not exclusively in Massachusetts. We have a site in Maine and a site in Texas.

Health Hats: I didn’t know that.

Michael Macht Greenberg: Yeah. Folks from all over the country come to some of our programs; frankly, we have people from all over the world for some of the programs.

I agree with you, Danny, that coalitions and partnerships are crucial to success and thoughtful advancement, and effective care. I’ll give you a few examples of how we try to make partnerships in the best interest of good healthcare for our patients. The first is along the continuum of all the programs that I described. One of the things that I have worked very hard on as the senior director of the division is to have those programs know each other, cooperate and work together, either on the individual level when patients are referred from one program to another or on a broader programmatic level, where we get leaders from different programs together to talk about the services they provide, the needs of the kids that they’re meeting, the needs of the kids, they feel frustrated and yet unable to meet, and how the different programs can work together. Either again to benefit a particular child or to develop a new program or intervention that could be more broadly administered. I mentioned the MCPAP program, which is an effort for us to partner with primary care doctors and pediatricians across Massachusetts. I mentioned the school consultation program, which is our partnership with school districts across Massachusetts, where we’re not only providing education about clinical intervention and understanding mental health topics. But we’re providing support to school staff dealing with many challenges.

Academics, research, advisory panels 24:43Finally, one of the critical pillars of McLean Hospital is academics and research. We have a lot of exciting research happening. We have colleagues around the hospital participating in national meetings, presenting talks and papers, and being part of leadership work groups. We plug into the available networks in ways that enrich the staff at McLean and hopefully benefit the patients we’re trying to serve. But I agree with you. Partnership engagement is very enriching and essential.

Health Hats: I have two more things I want to ask you. First, is it part of your work? Do you have advisory panels of community members, parents, and primary care clinicians that help evaluate your work and make recommendations or talk about what’s happening outside of your facility facilities?

Michael Macht Greenberg: We have parent and family advisory groups that are part of the fabric of the hospital that we design for listening and learning so that we can hear from families what their experience has been and what their recommendations are. Thoughtfulness and humility would be necessary for any institution to remain strong. And I agree, that’s very important. We want to be available to share the knowledge that we have to the benefit of the folks who are coming to us for help and advice. We also want to ensure we always remember the importance of listening and paying attention because you can learn something from the person you’re talking with.

Stigma 27:13Health Hats: All right, so my last thought is, if you were queen for a day and you could wave your magic wand and change something that would either make your staff’s life or your patient and family’s life easier, what would it be?

Michael Macht Greenberg: Hard to pick. Just one?

Health Hats: Okay, so pick two.

Michael Macht Greenberg: So many wishes. One thing we continue to pay attention to is what has traditionally been the stigma of mental health. It has been for many years that if one were to share a mental health problem, you could risk folks perceiving that there’s some weakness or inferiority or encounter judgment or this kind of thing. We don’t judge people’s character because they have cancer or diabetes. But there has been that unfortunate potential to look with some amount of judgment when folks talk about depression or anxiety. I think this is the beginning of change, and I’m grateful for that, but I feel we still can continue improving.

Health Hats: It’s hard to get if you feel that getting care and help early is hard.

Michael Macht Greenberg: Yes. Absolutely. That is such an important point to make. We are available for people who want and are willing to come and work with us, and folks feel that it’s okay. Now, we see many more prominent public figures making public statements about the appropriateness and the necessity of good mental healthcare. I also want to celebrate a significant, nationally recognized de-stigmatizing healthcare campaign run through McLean Hospital. We have various patients, public figures, and celebrities that give testimonials, often arranged in a visual display. It’s been at Logan Airport. It’s been at many other public venues.

Level the playing field between physical and mental health 30:07But to answer your question, if I were king of the world and could wave the wand, I think minimally, I would want to level the landscape between physical and mental health. We need to help people realize that we’re all human. We all have our vulnerabilities. We all deserve to have care and understanding without judgment and self-recrimination. I will go with that one because if I could pull that off, that would be enough accomplishment.

Health Hats: All right. Thank you.

Michael Macht Greenberg: Sure, thank you so much. This has been rich.

Health Hats: Oh, thanks for all you do.

Michael Macht Greenberg: Yeah, always good to chat with you.

Reflectionby JP Pooley/Getty images

My first job in healthcare was as an aide at the Detroit Psychiatric Institute (DPI). I got the job because I didn’t want to cut my hair. I had a choice between reading water meters or as an aide at the DPI. The water meter gig paid more. I was a privileged white boy from the suburbs and couldn’t bring myself to cut my hair. The Psychiatric Institute was an inner-city monstrosity with very sick people, very sick poor people, mostly of color. One supervisor resented me and set me up in dangerous situations, leaving me alone with delusional, angry people. I got hurt several times. Another supervisor was impressed with my courage and naivety. He taught me and protected me. My nursing supervisor introduced me to the idea of nursing school and convinced me to apply. The rest is history.

Created by DALL.E

I tell that story to reflect on how different the DPI was from McLean. McLean is more for privilege and DPI for people experiencing poverty and down and out. The institutional practice of mental health care changed a lot over 55 years. As near as I can tell, the Detroit Psychiatric Institute closed in the late 1990s. While inpatient treatment of emerging adults with severe mental illness is, on average, considerably more humane than my experience at the DPI, we have a long way to go. Michael Macht-Greenberg confirms that we lack sufficient beds and licensed professionals to staff those beds. Mental illness continues to be a stepchild to physical health as if they can be separated. I’m not sure why producing this episode so depresses me. Michael is a compassionate, passionate, tireless leader of the best this country has to offer. I should feel positive and hopeful. We’ve come a long way, my friends. And yet…

Podcast Outro 33:49I host, write, edit, engineer, and produce Health Hats, the Podcast. Kayla Nelson provides website and social media consultation and manages dissemination. Leon van Leeuwen edits the article-grade transcript. Joey van Leeuwen supplies musical support, especially for the podcast intro and outro. I play bari sax on some episodes alone or with the Lechuga Fresca Latin Band. I’m grateful to you, who have the most critical roles as listeners, readers, and watchers. See the show notes, previous podcasts, and other resources through my website, www.health-hats.com, and YouTube channel. Please subscribe and contribute. If you like it, share it. See you around the block!

Episode NotesPlease comment and ask questions

at the comment section at the bottom of the show notes
on LinkedIn
via email
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Music on intro and outro by permission from Joey van Leeuwen, Drummer, Composer, and Arranger including Moe’s Blues for Proem and Reflection

Other CreditsIntro photo of Vulture Couple by Rich Rieger used with permission

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Sponsored by AbridgeInspired by and grateful to Emeka Chima, Erika Blair, and Annie Schneider

LinksMcLean Hospital’s extensive range within the child and adolescent division

Massachusetts Child Psychiatry Access Project or MCPAP. That’s a consortium of hospitals across Massachusetts that provide consultation and referral to many primary care doctors across Massachusetts.

Last audit of the Detroit Psychiatric Institute

Related podcastsSeries: Pediatric Transition to Adult Care

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Exploring Youth Clubhouses, drop-in centers for youth in recovery from/at risk for substance use disorders, focusing on access, partnerships, & peer support.

We respect Listeners, Watchers, and Readers. Show Notes at the end.

Watch on YouTubeReadThe same content as the podcast, but not a verbatim transcript. A newsletter-like version with images. Could be a book chapter. download the printable transcript here

ContentsProem.. 1

Podcast intro 02:45. 2

Health is fragile 04:08. 2

Youth Clubhouses, safe places 07:27. 3

Access to the Clubhouse 10:23. 4

Community partnership and collaboration 13:22. 4

Youth program engagement and leadership 17:03. 5

A word from our sponsor, Abridge 19:03. 6

Coping tools in your toolbox 19:48. 6

Continual learning. 6

Hopeful, hopeless 25:03. 7

Policy change, harm reduction 28:23. 7

OASAS: Office of Addiction Supports and Services 31:01. 8

Clubhouse Radio 31:45. 8

Narcan and Harm reduction 34:36. 9

Reflection 38:16. 10

Tribute to Casey Quinlan 39:53. 10

Tribute to Michael Funk 43:46. 11

Podcast Outro 44:33. 11

EpisodeProem

| Figure 1: DALL.E image of Sculpture of community-based research in style of Yoshitoshi Kanemaki |

I gravitate toward, am attracted to, community-based programs that build partnerships with their participants. The programs serve well, plant seeds, build capacity, and inspire copying. Medical, professional, or larger companies have a more challenging time serving, planting, building, and inspiring. Perhaps it’s a function of community-based and partnerships with lived-experience experts. I thank Dorothy Cucinelli, last episode’s guest, for introducing Paul Taylor and the Youth Clubhouses at the Mental Health Association of Columbia Greene Counties.

Youth Clubhouses are drop-in centers for youth and young adults in recovery from or at risk of developing a substance use disorder. These programs provide recovery supports – including peer support – as well as skill-building and community engagement opportunities, educational and vocational support, recreational and prosocial activities, family engagement activities, and sessions on health and wellness. Youth and Young Adults | Office of Addiction Services and Supports (ny.gov)

Youth Clubhouses are programs of NY State OASAS.

The New York State Office of Addiction Services and Supports (OASAS) oversees one of the nation’s largest Substance Use Disorder systems of care. Approximately 1,700 prevention, treatment, and recovery programs serve over 680,000 individuals per year. About Us | Office of Addiction Services and Supports (ny.gov)

Kai Hellman invited Paul Taylor and Phoebs Potter to join us. We spoke about youth access to the Clubhouse, Clubhouse partnerships in their communities, youth engagement and leadership, peer support, and harm reduction.

We will end the episode with two tributes, one of Mighty Casey Quinlan who died a couple of weeks ago and to my son, Mike Funk who would have been 47 on May 17th.

Podcast intro 02:45Welcome to Health Hats, the Podcast. I’m Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all of this. Like what you’re reading, hearing, or watching? Please support us on Patreon. Link in the show notes. https://patreon.com/healthhats. Membership benefits will include subscriber-only on-mic episodes sharing behind the scenes of podcasting, advocating, musicianship, and life, your name on the producer wall on my website and show notes, mp3s of me playing the sax, invitations to live Zoom chats with fellow subscribers, personal calls and coaching and mentoring with me. Thank you.

Health is fragile 04:08Health Hats: Greetings. Thank you very much for joining us today. I have three guests with me, and I will let you introduce yourselves and briefly tell us about when you first realized health was fragile. Paul, do you want to start?

https://www.mhacg.org/clubhouses

Paul Taylor: Sure, my name’s Paul Taylor, the Director of Communications and Development for the Mental Health Association. I started in the spring with the agency, trying to put a good spotlight on mental health for the community, build up some of our agency resources, and how we interact with the community. Healthcare is definitely fragile for everyone, especially with the pandemic taking a toll on everyone for their health and well-being. How we approach our livelihood has become very important to overcome for the communities.

Health Hats: Thank you. That’s the Mental Health Association of Columbia Greene Counties in upstate New York. Okay. Phoebs, do you want to go next?

https://facebook.com/c2clubhouse

Phoebs Potter: I’m Phoebs Potter. I work with the Youth Clubhouses at the Mental Health Association of Columbia Greene. We work with young adults and 12 to 18-year-olds on prevention and recovery support. Recognizing health is fragile is the reason we exist. The significant part of the fragility we don’t always think about enough, is the interconnectedness of all aspects of health. From social health to spiritual health, to physical health, to mental health, they’re not so separate. They affect one another. So, if one part of your life is going hard, it can hit all the others. We try to think about our approach holistically in that regard.

Health Hats: Thank you. Kai?

Kai Hellman: Hello. Kai Hellman, Director of the Youth Clubhouse of Columbia Greene under the Mental Health Association of Columbia Greene County. I have a more personal answer. As a young person growing up, I was always the quote-unquote sensitive one. I had insight into health and mental health differently than maybe the parents expected. When mental health was, as you know, is and was stigmatized in ways we don’t talk about. But I always wanted to talk about it. So personally, I think from a young age, I just recognize it in myself and other people.

Youth Clubhouses, safe places 07:27Health Hats: Thank you. So, is that the name of a program that the association provides? Can you tell us a little bit about that program?

Kai Hellman: The Youth Clubhouse is part of a clubhouse chain throughout New York State, funded by the Office of Addiction and Support Services (OASAS). I’m unsure how many clubhouses exist, but over 20 now with were seven in 2017. As Phoebs explained, it’s a space for young people at risk or in recovery that needs space, a safe space or a brave space to exist.

Health Hats: So, is that a physical or virtual space or both?

Kai Hellman: Both. We were strictly physical until the pandemic when many agencies created virtual spaces. Now we continue that virtual space.

Health Hats: Is this for young people alone, or is it for young people and their families?

Phoebs Potter: I can step in. It’s centering on the young person. We take a person-centered approach. When a young person walks through our doors, we ask for very little information from them, and we tell them out of the gate that confidentiality is something we’re going to honor and respect here. In terms of the Clubhouse itself, the family does come through. We have plenty of folks who are comfortable with our staff and friendly and will come in to pick up their kid and say hello. But other kids also go there to escape complex family dynamics. So that’s a very different relationship. Kai did collaborate with some other organizations or programs, even just within MHA, to bring on Strengthening Families, a program offered, not necessarily at the Clubhouse when it’s open hours for the kids, but separately for families to come in with a young person, and work through family challenges as needed. So, family-based work is happening at MHA much more significantly. The Clubhouse, though, really is for the youth first. We can also help families with gas cards and support like that. When the kids’ struggle with transportation, we text or call up their mom and then brainstorm collaboratively. So, we seek those healthy relationships with the entire family.

Health Hats: How long has this program been going on?

Kai Hellman: We were first funded in 2017, so it’s been a solid five years.

Access to the Clubhouse 10:23Health Hats: What’s the process of people walking through your real or virtual door? How does somebody access your program? How do they hear about it?

Kai Hellman: We have a very low threshold. Phoebs explained that no paperwork, process, or referral forms exist. We are strictly a drop-in center. They might find out through word of mouth, which is the best way. We have social media. We put out flyers—things like that. We also collaborate with other organizations and youth programs, but word of mouth is the best way of engagement.

Phoebs Potter: The physical location makes a huge difference, too. In some ways, the Clubhouse in Catskill is the Community Center for Youth, especially since the town-run community center closed. I love when Kai tells the story of when they first opened. There was a line almost around the block of young kids just stoked to know there was a place with internet, couches, and food. They could just be themselves and come. MHA is supporting a tremendous community need by having this program.

Health Hats: To me, that is both wonderful and scary. It’s wonderful that there are needed, wanted, and used services, and it’s scary that whatever was there before is closed. There’s always the capacity and need for balance. Do you guys feel like the need is greater than you can provide?

Kai Hellman: Absolutely. What first comes to mind is that we’re centrally located in Catskill and Hudson. But we are coming to rural counties, Columbia and Greene are rural counties. So, we’re missing out when from one end to the county to the other, an hour, sometimes an hour and a half, almost in transportation. We just can’t meet all the need.

Community partnership and collaboration 13:22Phoebs Potter: It doesn’t feel like one program will ever meet everyone’s needs because everyone’s needs are so diverse and different. So, we try to use the youth center to serve different needs. Our kids are now trying to petition to get access back to the classical court that was part of that, which is not part we owned but is not being used. We try to collaborate with other organizations in the community willing to open their doors to youth. I will happily direct a kid out of the Clubhouse to a different space if it’s a better fit. Even though our kids have the Clubhouse, they regularly speak about missing these other spaces. So, we’re trying to partner.

Health Hats: That’s a nice segue. It seems you are providing, I was going to say, a niche, but don’t want to, I don’t want that to minimize that, but you’re providing a specific service, and people need an array of services. You’ve mentioned some of them that you try to provide: a safe space, peer support, and family support. Then I’m sure there are the gas cards. That’s a different kind of support. Then there’s medical support. How do you coordinate with schools and clinics, and treatment facilities? How does that happen? Paul, do you want to take a stab at that?

Paul Taylor: Sure, with the Mental Health Association, we have many programs and services available. Over the past 12 years, the agency has grown exponentially, above, and beyond just mental health and mental illness, having all these additional programs to help our community with their total physical and mental well-being. As we said earlier, it is intertwined, so we have things like our children’s case management program that gets involved with all the different preventative and behavioral health needs of children out there. Children that have been through the system may be struggling with additional needs or behavioral problems. Maybe they’re also acting out to help you know them in advance. We have a child advocacy center that deals with victims of abuse and neglect cases and so forth. We have mobile crisis teams as well that interact with the community. So, we interact with different school providers when it comes to that education piece. Our teams between mobile crisis and Child Advocacy Centers are typically very much in the schools, providing education, support, and resources to the students and the faculty depending on the needs for addressing different healthcare needs, especially within the communities’ mental health.

Youth program engagement and leadership 17:03Health Hats: How are the people you support and engage with involved in program design, governance, and evaluation?

Phoebs Potter: I’m so glad you asked that question because that’s the crux of Clubhouse. It’s written right in the mission statement from OASAS that its youth-led and youth leadership drives the priorities. We’re structured to have an advisory committee that’s youth and community members aware of what’s going on with Clubhouse and are invested in our work. But our youth are, and we tell them this every day, part of their personal growth of feeling empowered and starting to experience and learn the life skills of hey, going from I want something to how do I get there and achieve that? And what does it feel like for a young person to be in a space with resources to help them get there versus just feeling shut down? It’s a tremendous growth and learning experience for them. There’s a program or a field trip we’ve brought on at Clubhouse that the youth didn’t voice some interest or desire to see happening. Down to our scheduling if we stay open on holidays. Our youth leadership team vets these questions. Then our staff works around what we can do with them. We were the first program to find opportunities to hire youth to be paid to take on even more significant leadership responsibilities within the Clubhouse. That’s been powerful. Often, youth drop out of the program once they hit 15 or 16 because they need to work. So, to have that integrated has kept our youth present with us and allows us to say, hey, help us do the outreach in the community to get more kids through the door. It’s crucial to what we do that they’re driving the work.

A word from our sponsor, Abridge 19:03Now a word about our sponsor, ABridge. Record your healthcare conversations with doctors and other clinicians with ABridge. Push the big pink button and record. Read the transcript or listen to clips when you get home. Check out the app at ABridge.com or download it from the Apple app store or Google Play store. Let me know how it went.

Coping tools in your toolbox 19:48Health Hats: I’m doing this series on young adults with mental illness. I’ve done eight or nine different interviews, trying to be rooted in lived experience. I’m interviewing people in their mid to late twenties who are on the other side. Not so much the other side of them still dealing with what they’re dealing with, but they have some reflection. They can reflect on what happened while they were younger and more in crisis and what they talked about. I’m speaking for them, which is dangerous. But they talk about feeling like it’s okay to say something’s wrong. Something’s going on. I need help. They talk about how important it was to have a glimmer of hope while they were going through a crisis and then be able to develop tools in their toolbox to deal with it. One of the reasons they think they’re on the other side, so to speak, is they have at least a couple of tools for everything that happens to them. So, if the first thing doesn’t work, they have another thing to try, making them feel more confident. Then they’re in more of a position to give back because they feel safer with themselves. I’m saying that because when I talk to, I’m also talking to people like administrators of inpatient programs or our emergency department physicians or primary care. I was going to say they don’t think about that, which is not true. They do. They’re more thinking about wanting to handle as much as I can because there are so few places for them, for people to go and get the help I can’t provide.

Continual learningHealth Hats: So my question is, what should I ask them as I explore more about this? This critical group of people who need our support, but I’m old, my day is over, and I haven’t figured out that much in my 70 years. So it’s the young people who got the energy and new ideas, and it’s okay. So anyway, that’s my little soapbox. What do you think?

Kai Hellman: I’ll take a stab. I think just what comes to mind for me is it’s more of a conversation back and forth because, you know, every day, I think we learn just as much from the youth and their present experiences than we might give back to them. So it’s more of an ongoing conversation flow where you’re like taking and giving to each other. That’s what comes to mind for me.

Health Hats: That’s great. Thank you. What do you think, Paul?

Paul Taylor: Yeah. So much of it is peer support based where with Clubhouse, and we also have other peer support services where it’s really about shared life experiences and finding value in supporting each other and saying, hey, I’ve been through it. This is where I was able to develop from that. It helps support another person as well. So, asking the questions, and Kai was saying about having that conversation, what’s in it for you? What is it that you need? What do you find value in? How can we help support you? How can we do something different and find that mutual, shared understanding?

Hopeful, hopeless 25:03Health Hats: In a way when there’s a real difference between me talking with people with lived experience and talking to the support world in that talking to the support world is depressing, and I feel hopelessness. On the other hand, when I speak to young adults, talk to some parents, and I’m talking to you guys who provide immediate support. It feels way more hopeful. So, when I think about the system in general, I can just go down these rabbit holes of, oh my god, we’re nowhere. How do we pay for this? How do we know how we integrate it? There are not enough people like professionals and support people. There’s just not enough. The waiting lists are incredible, so how will this ever change? How’s some investor going to make a lot of money on this? They’re not, but again, when I talk to, and maybe my sample is skewed because I’m talking to people who have had success, but when I talk to a primary care physician who says yeah some people have success, but there’s so many that haven’t. One primary care doc I talked to, said, it just weighs on me that I wish I could have done more, but it went nowhere. So anyway, I don’t know what kind of reaction I expect. Kai, do you have a thought about that?

Kai Hellman: Oh, yeah. I think that’s the beauty of OASAS creating the clubhouses. There are the systems of care, the traditional systems of care, treatment, these formal systems, and then there’s now these clubhouses where they’re doing something different than they have before. It gives us this space, freedom, and creativity to flow and meet people where they’re at. It’s just common sense that it’s happening and that we can do this and support and empower people.

Health Hats: What should I ask you or what should we discuss in your wonderful work area?

Policy change, harm reduction 28:23Phoebs Potter: One thing that pops to my mind in this conversation is we’re at a Clubhouse trying to connect a systems-level chat that, you’re right, can be very difficult for youth with lived experience to say. How do you all become the empowered voice of the future for what these systems need to be and look like? We run a program with young people called Harm Reduction Heroes. They are trying to get them to understand harm reduction as a philosophy within systems and structures. They’re learning it at a personal level. What does it mean to practice harm reduction in my own life? But then also, what does it mean to build a world, a society, and a culture where harm reduction is how we react to people in need? Which is the system’s question. One of our heroes is the advocate. So we, on election day, happened to be meeting the Monday before. So we walked through who was on the ballots. Then we had them break into teams and run mock governor and campaign speeches and just come up with their ideas for what systems change or what they would want to see, or what would help them through the context of wanting this goal of harm reduction in the mental health and substance abuse worlds and in general. So that’s fun. I don’t know a fun piece of our work. They’ve talked to county legislators before. MHA holds different advocacy opportunities. I don’t know if the kids have gone for that, but I know they’ve visited Albany at least once. So, there are neat ways those conversations can connect because I think you’re right. As the inspiration lives more in the young people who are navigating the systems than it does with the people who’ve been in it for decades, entrenched, and just are like, it’s not changing, we’re so limited, and our institutions are limited and often not for lack of care, to your point. It’s not that the people aren’t thinking about these other factors, but they’re not set up systemically to be able to do them. The flexibility Youth clubhouses were created for us to look holistically at a person’s needs and meet them in that bigger picture, say a kid going to see a good movie on a field trip night as crucial as their counseling session. Because if they didn’t do that, they wouldn’t have shown up to their counseling session. They are connecting the dots in the system. Responsivity is the academic term I think about with this work, right? It’s one. You can’t address people’s needs without asking what makes them responsive to treatment. What makes them able to show up? You’re not going to get anywhere. So yeah. I appreciate your soapbox, Danny. It resonates.

OASAS: Office of Addiction Supports and Services 31:01Health Hats: Tell the listeners what’s OASAS.

https://oasas.ny.gov

Kai Hellman: The state organization oversees Clubhouse and traditional treatment centers for substance use disorder. It’s the office of alcohol. Nope, sorry. They changed their name. I always get caught up. Office of Addiction Supports and Services. They nicely changed their name from a less stigmatizing name previously.

Clubhouse Radio 31:45Health Hats: One of you sent me a link to Clubhouse Radio. I looked at that. So could one of you tell us a little bit about Clubhouse Radio?

Phoebs Potter: I’d love to. That was my entree into the Clubhouse four years ago. I had been working with the Ville Arts Center up in the far northern part of Greene County, also working with youth who were in transition, and I had connected with the folks at Wave Farm, Tom, and Galen, and they wanted more youth programming on the air. So we talked to Kai and said, could Clubhouse be a home base for that? We set that up. My role at first was just facilitating that program and the whole vision. I had a co-teacher, Kingston, who came in and got the entire program off the ground too. So, I’ll give him credit. It’s just a space for what we’re talking about, for all these deep insights and perspectives of youth to be part of the conversation going on in the public about what we do about our health crises. But also, a space for them to learn how to use a soundboard and equipment and be responsible for being on the air every Friday at 6:00 PM. Now a prime spot for three years, they’ve gone strong. So, we have two youths every week who are the host and the sound engineer, and they’re set. They invite other youth in as guests, or we have community guests.

And at first, we took a structured approach to the program. We would do a music program. We’d have a topic for three weeks. We’d do music one of those weeks, then poetry and creative writing, and a political, more social discussion. But, over time, we just let go of the adult’s perception of the structure that would work and let them define their structures and ways. Sometimes the most insightful things they say are just random thoughts about the music they decided to play. I have come to embrace its sort of open structure. My role at this point is just like sitting back and ensuring they’re making plans for a show and sending them research snippets. Just for anyone who listens to Clubhouse Radio, it can be a little all over the place, but I just find, as I said, these nuggets of wisdom are nestled all through it. They have run with it and grown tremendously through that. And it’s a beautiful way just to hear what matters to young people, right? What are they into? What’s motivating them? What are their aspirations for the future? That tells us a lot about them and what they need to be.

Narcan and Harm reduction 34:36Kai Hellman: I just have to say there were a few points I didn’t mention regarding our young adults and our Certified Recovery Peer Advocates (CRPA), and the Narcan training that we do. So, we focused a lot on our youth program, which we tend to do. Because there’s always so much going on. But in addition, our young adult program is for 18 and up. Two certified recovery peer advocates can work with people one-on-one and in group settings and field trips. Like our youth programming, it’s more in the recovery aspect instead of the prevention aspect. Because at that point when you’re 18 and up, you tend to settle into, yeah, I’m a person in recovery, or I’m a person struggling with addiction, or things like that. So, we have those programs available through the youth clubhouse. We’re currently in the Greene County jail doing some groups. One of our CRPAs is in there doing excellent work. So, we’re in both counties doing the thing and want to mention the Narcan training—all the Clubhouse staff. First, I try to hire all Clubhouse staff as people with lived experience, whether it be mental health, disability recovery, or whatever, all the things that make us human. So always trying to hire people with lived experience, people with lived experience. And then, I got myself lost in what I was saying. Narcan, going towards Narcan, our youth and all staff are trained in Narcan from the onset. So that and we’re trained to train. So, we train the community. We can train young people that come in. We can train adults. We train programs. We and all our youth peer leaders are also trained to train. So, we have right now eight youth peer leaders on our payroll, and they’re all trained to train. They’re peers and adults. They also have community events. They’ve had great success doing that.

Health Hats: My hats are off to you guys. Thank you very much. This has been great. This has been wonderful. Thank you for what you do.

Reflection 38:16See what I meant by my attraction for community-based programs that build partnerships with their participants: the programs serve well, plant seeds, build capacity, and inspire copying? We heard from another such program, a national program, when I interviewed Betsy Cowen Neptune in July 2022 about BUILD – Self-Confidence, Agency, Engagement in Young Adults. Perhaps the episode with Matt Neil, high school teacher, about their Ambassador program is also such a community- (school) based program. What can be copied from these programs – not their flavor or culture – those are hyperlocal. Can you copy community will, collaboration with those served, experimentation, and humility? Those feel organic. Can corporate structure be copied – one is in a school, one state-wide and government-sponsored, and the other private and national? Can we generalize about leadership or technologies? Well, you need humble, visionary leaders. I didn’t hear much about technologies, except for Clubhouse Radio. I was thinking more about app technology. I’m stumped.

Tribute to Casey Quinlan 39:53For those of you who consumed the April 1st 2023 episode 193, The Mighty Mouth Goes Quiet, Casey Quinlan, Mashup 2021-22, I have the bittersweet news that Casey Quinlan died on April 25th. Bitter, because I’m sad, sweet, because she was ready. Here’s what our mutual friend Colin Hung said in tribute:

On Tuesday, April 25th, 2023, the world lost a bright flame. After a long journey with cancer, Casey Quinlan @MightyCasey passed away peacefully with family and friends by her side. Quinlan was one-of-a-kind and if you had the good fortune of meeting her in person or interacting with her online, she undoubtedly left an impression. She was one of the few people who had zero qualms about speaking her mind – and that is one of the reasons why I admired her.

Outspoken Advocate

I got to know Quinlan through the early #hcldr tweet chats that we hosted (and still host) on Tuesday nights at 8:30 pm ET. At the time, I had never seen someone who was so forthright and direct when expressing healthcare opinions. No matter the topic, Quinlan had piercing insights to share.

Quinlan was an outspoken advocate for better healthcare. She advocated for many improvements including more patient involvement in care decisions, improved access to data, better privacy protection, more accountability from providers/payers/employers, medication affordability, and more patient-led innovation. She was a true believer in the phrase: “Nothing about me without me”.

Quinlan never minced words and was almost always spot-on in her assessment of the situation. I will never forget sitting beside her in breakout sessions and hearing her both heckle the presenter when they made incorrect/inane statements and praise them when they said something insightful. She definitely leaned into her reputation as a “loudmouth” …and those of us who knew her loved her for it.

The QR Code

Casey Quinlan and Colin Hung

In addition to her strong advocacy and speaking truth-to-power, Quinlan was well known for the tattoo of QR code on her chest. That QR code was linked to a website where she had documented her medical history and her advanced directives. You can read more about why she did it here: Why I got a QR code tattooed on my sternum

The tattoo was quintessential Quinlan. With it, she took the power away from healthcare institutions and placed it firmly where she believed it should be – with herself as a patient. Her QR code was a not-so-subtle way to stick it to the entire healthcare ecosystem that was too slow and too disinterested in solving access problems for patients.

You can see the QR code in this photo from 2015.

Tribute to Michael Funk 43:46Ann, Mike, Danny

Michael Funk was our son, brother, and friend to us for 11 years. From age fifteen to twenty-six when he died from complications of melanoma. It’s Mike Funk’s 47th birthday today, May 17, as I’m producing. I’m running a film strip in my mind with laughing, crying, perplexing, disgusting, loving scenes. A film strip seems so two-dimensional, while he was so four-dimensional. I’m grateful to have been part of his life for those eleven years. He changed my life. I miss him deeply.

Podcast Outro 44:33I host, write, record, edit, engineer, and produce Health Hats, the Podcast with production assistance from Kayla Nelson for my website and social media consultation, and managing dissemination plus Leon van Leeuwen transcript editing. Joey van Leeuwen supplies musical support, especially for the podcast intro and outro. I play bari sax on some episodes alone or with the Lechuga Fresca Latin Band. I’m grateful to you, who have the most critical roles as listeners, readers, and watchers. Please subscribe and contribute on Patreon. Help me keep the lights on and out of my retirement funds. See the show notes, previous podcasts, and other resources through my website, www.health-hats.com, and YouTube channel. Link in the show notes. If you like it, share it. See you around the block!

Episode NotesPlease comment and ask questions

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, Twitter, Mastadon to @healthhats

Production TeamWeb and Social Media Coach, Dissemination Kayla Nelson @lifeoflesion

Leon van Leeuwen edits the article-grade transcript.

Music on intro and outro by permission from Joey van Leeuwen, Drummer, Composer, and Arranger including Moe’s Blues for Proem and Reflection

Other CreditsIntro photo of Vulture Couple by Rich Rieger used with permission

Photos of dewy flower and foggy holler by Sue Heatherington used with permission

Sponsored by AbridgeInspired by and grateful to Dorothy Cucinelli, Betsy Neptune, Matt Neil, Kelly Lane, Jan Oldenburg, Casey Quinlan, Colin Hung

LinksYouth and Young Adults | Office of Addiction Services and Supports (ny.gov)

About Us | Office of Addiction Services and Supports (ny.gov)

Clubhouse Radio

Mental Health Association of Columbia Greene MHACG website

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The Mighty Mouth Goes Quiet, Casey Quinlan, Mashup 2021-22

The post Serve Plant Build Inspire #9 Emerging Adults w Mental Illness first appeared on Danny van Leeuwen Health Hats.

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COAST, a 24/7/365 access program in upstate NY, offers access to med-assisted treatment & wraparound services for substance use & mental health concerns

We respect Listeners, Watchers, and Readers. Show Notes at the end.

Watch on YouTubeReadThe same content as the podcast, but not a verbatim transcript. A newsletter-like version with images. Could be a book chapter. download the printable transcript here

ContentsProem.. 1

Podcast intro 01:13. 2

Access through a single number 1:50. 2

Wraparound services 04:16. 2

The behavioral health network collaborative 05:52. 3

Doing something right 08:40. 4

Substance use and mental health 09:32. 4

Warm hand-off 11:52. 4

Partnership with families 12:33. 4

Residential and inpatient? 13:28. 5

A word from our sponsor, Abridge 14:20. 5

Collaboration over competition 15:03. 5

Networking coordination 16:52. 5

Emerging adult priorities 18:07. 6

Matching resources to demand 21:36. 6

Maximize access 25:19. 7

Prevention 28:59. 8

Marketing programs 29:49. 8

Reflection 33:34. 9

Podcast Outro 25:39 9

EpisodeProemPhoto by Nima Ara on Unsplash, reference not found

When I’m in trouble or have a question, I need help when I need it, preferably from a warm person, not an app or a bot. Is this even possible today? One of the health systems I use just shifted the patient portal inquiry responses to a central department, open Monday through Friday, 8 am to 5 pm. No more replies to non-emergent questions from my doctor or nurse within two days as I’m used to. Not a warm person when I need it.

I called my dear friend Dorothy Cucinelli as I planned this Emerging Adult with Mental Illness series. Dorothy, CEO of the Capital Behavioral Health Network (CBHN), sponsors COAST (Coordinated Opioid and Stimulant Treatment) 24/7/365 person-answered hotline for people in need. Kelly Lane joins Dorothy to tell us more.

Podcast intro 01:13Welcome to Health Hats, the Podcast. I’m Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all of this.

Access through a single number 1:50Health Hats: Dorothy and Kelly, thank you for joining us today. I look forward to discussing the COAST program (Coordinated Opioid and Stimulant Treatment). And as we’ve talked about previously, I’m focused on young adults and their families with mental illness and the services they need and can get. So, I was very excited when Dorothy and I were just catching up to hear about the COAST program. I’m wondering if you could tell us a little about how people access COAST referrals, supportive services, young adults, and families.

Kelly Lane: Sure. It’s easy. We’ve designed this project with a single number that connects you to services anywhere in our eight-county region, south to Columbia Green County, north to Warren, and Washington.

Health Hats: In upstate New York?

Kelly Lane: Yes, the Capitol District, Warren, Washington, and Columbia Green.

Dorothy Cucinelli: For those listeners who might not know this area, the Capitol District is Albany, about three hours’ drive north of New York City. We cover the eight counties in that region, to the Massachusetts border and West, then up north to the North Country, to the Adirondacks, and south to the Catskills. It’s a big geographic area. It has quite a mix of demographics, everything from people in the cities to very rural locations. One of the challenges we’ve been able to meet successfully is establishing ways for people to access this program regardless of where they live. It’s unique in that, as Kelly said, it’s a phone line, so people can call this number twenty-four seven/three sixty-five. And they are connected immediately with a prescriber. So, someone who can write a prescription and get that person connected to medication-assisted treatment right away.

Wraparound services 04:16A prescription goes to the pharmacy. If the person doesn’t have the means to pay for that medication, our grant program also covers that. And we can even arrange transportation to get that person’s prescription. We use the term wraparound services a lot in the mental health field. And this is a form of that because it covers a lot of different bases that individuals sometimes aren’t there. And if any of those pieces are not in place, the whole thing doesn’t work. We’re proud.

photo by Helena Lopes on Unsplash

Health Hats: Wraparound is a comprehensive, strengths-based, planning process put in place to respond to a serious mental health or behavioral challenge involving children or youth. Wraparound shifts focus away from a traditional service-driven, problem-based approach to care and instead follows a strengths-based, needs-driven approach. Meaning it considers the whole people and what they need in their lives and not just the medical services.

So, does that mean it’s two in the morning, and I need some help for my son, and I can call and get a live person?

Dorothy Cucinelli: Yes, that’s precisely what it means.

Health Hats: Wow, that’s amazing. You can’t do that with Amazon, that’s for sure.

The behavioral health network collaborative 05:52Health Hats: The little thing you told me about is that this is a collective. Tell us how it is structured and your roles in this.

Dorothy Cucinelli: Well, let me tell you a little about the network, and then I’ll toss it over to Kelly. The grant went to the Capital Behavioral Health Network. CBHN is our abbreviation, and we represent about 30 different mental health and substance abuse provider organizations in that eight-county region I described earlier. So, everything from the very large to the small providers who do clinic services, residential the whole range. CBHN brought together a subset of those major players who could best deliver this service, coordinated a program, designed it, and made this happen so that all these providers who do work together sort of on individual case-by-case basis issues. But really, they don’t typically work together on a significant project like this. So, our role was to bring them together. And to continue to coordinate. And Kelly’s role in this is a lot of that coordination. Kelly, do you want to speak about that?

Kelly Lane: So as the partners came together and identified a critical need in the community. And that’s when someone is interested in making a change and the period at which they can get help. And there’s typically a significant wait list, especially for folks who need medication-assisted therapies for opioids and stimulants. So, the partners came together and said we want to design something that meets that need to help people immediately connect folks to services and supports. I see incredible commitment and willingness to partner across counties and service types. There are ten funded partners and even more partners who aren’t funded but are part of this network of providers in this grant who came together and worked out how they would implement. And continue to meet and improve the project.

Doing something right 08:40Dorothy Cucinelli: We know there’s a need for services of this type because of the opioid epidemic, but what surprised me is the extent to which people are accessing the line. I’m happy that they are, but we’re getting an average of about 130 calls per month on that line. People are getting connected to treatment, and many have had callers say I was on the verge of deciding whether to use another hit of a street substance versus calling. And I called you, and it has made all the difference. It’s been life-changing for a lot of people. Which is terrific. We’re very proud of that. And we hope to continue doing it.

Substance use and mental health 09:32Health Hats: Is this a service for substance use and severe mental illness, or is this pretty much focused on substance?

Kelly Lane: It’s focused on substance use and specifically opioid and stimulant use.

Health Hats: In the years I’ve done this kind of work, it seems like having a firm line is challenging. It looks like the call might be about substance use, but you probably don’t have to scratch the surface too far to find underlying issues. People are often self-medicating because they’ve significant mental health issues, whether it’s despair or anger or voices, and then they get to addiction through self-medication. Is that part of how you decide on referrals and supportive services by what the mix is?

Dorothy Cucinelli: We do get a lot of callers who self-identify as just a mental health issue. This is not a line where we just give you a script and send you on your merry way. There’s a significant coordination component with this grant so that the person calling gets connected to services that will help them get started or continue their treatment and recovery, whatever that may be. So, it’s not just, okay, we’ll give you a script and let you go. It’s ongoing care.

Warm hand-off 11:52Dorothy Cucinelli: The other thing is, as I said, we do get people who call with a mental health issue, who don’t have an active addiction, and those people are given that same kind of handoff to other services. So, it’s not we just give you a list and say, here you’re on your own. Call them and see who’ll take you. Here’s a list of providers. It is a referral process, and it’s what we would call a warm handoff.

Health Hats: I was just going to say that this sounds really like the warm handoff, which is just so much.

Partnership with families 12:33Health Hats: What if a parent calls about a young adult in their household or a caring person?

Kelly Lane: One of the beauties of this program is that it brings together treatment, recovery, and prevention. Prevention programs can support that loved one or that caring person. At the same time, the individual struggling may be given information and is supported and engaged in services. But prevention services can provide that support to the family member in helping educate, helping connect. So, it truly is a great partnership that can support the individual and the folks around that person.

Residential and inpatient? 13:28Health Hats: Does your network include residential treatment as well?

Dorothy Cucinelli: The members of CBHN are comprehensive regarding the range of services. So, it’s mental health and substance abuse providers within those two categories. It’s everything from family support services which we just talked about, to outpatient clinics and residential. We don’t have hospitals in our network, so it’s not inpatient hospital care, but everything else is included in the network.

A word from our sponsor, Abridge 14:20Now a word about our sponsor, ABridge. Record your healthcare conversations with doctors and other clinicians with ABridge. Push the big pink button and record. Read the transcript or listen to clips when you get home. Check out the app at ABridge.com or download it from the Apple app store or Google Play store. Let me know how it went.

Collaboration over competition 15:03Health Hats: In my experience with you, Dorothy, although there was a solid collaborative streak among like providers, there was also intense competition. And I don’t know if it’s history, personalities, or whatever, but sometimes there could be fabulous collaborations and some less than successful. So, what’s been your experience with navigating the challenges of cooperation among so many organizations? Aren’t there territorial things you must deal with, or is it smooth? Are people just focused on getting the job done?

Kelly Lane: My experience has been that folk, for the most part, are willing to do whatever it takes to get the job done. Because of the large geographic area that people serve and even perhaps do a bit more coordination to serve some areas that they wouldn’t cover. And that’s welcomed because everyone’s getting their needs met, services are operating, and people are receiving help. So, our experience has been positive in that respect for the most part.

Networking coordination 16:52Dorothy Cucinelli: I would add that beyond Project COAST, there are other things that we do as a network, and one of the things that I have found through my experience is that the network provides a forum for particularly leaders of many of these organizations to come together regularly and share ideas, share concerns, strategies whatever it may be. That has been lacking in many other areas in the region. So, we were the sort of the glue that kind of brought everybody together, and it’s been gratifying to see people are interested in just solving the problem. They want to help people. There isn’t a whole lot of territorial stuff. These are very dedicated people invested in their work. I can’t speak highly enough about them. They’re all terrific.

Emerging adult priorities 18:07Health Hats: When I talk with a small sample of people who have been young adults, they talk about two things. One is what you were talking about, getting help when you need it, lining it up. Getting help tomorrow is not good enough. You need help when you need it. You’ve talked about that. And then they talk about how they’re treated in isolation. Meaning that they live in a world of drugs and that it’s hard to include your parents in that world talking to people you care about because it’s embarrassing. And there’s stigma, and I think I’m hearing that you get help when you need it and that it’s a comprehensive program to help deal with many of the levels of recovery. That will help people move toward recovery, which concerns young people. So, what have you learned yourselves when you’re evaluating? You get together with leaders. How about with the people that you’ve served? How do they help inform your program?

Kelly Lane: When you were talking about how young folks engage in the world with drugs and with the people they care about? Immediately I thought about peers as being that bridge: folks with lived experience who are now working to support others on the path to recovery. And one of the things that our program does well is connecting folks with Certified Recovery Peer Advocates throughout the eight-county region. And I know there’s a great organization in Green County, the Mental Health Association of Columbia Green, that does a lot of work with young adults who have been in recovery and connects them with young folks who are struggling with their challenges. And they’ve been great in connecting with folks, keeping folks connected to treatment. I think peers also play another important role: being the bridge between the individuals in recovery and the service system and helping inform the service system of what’s working and what’s not working for the people they serve because of that great relationship.

Matching resources to demand 21:36Health Hats: So far, I’ve spoken with primary care physicians, an ED doc, a pediatrician, and somebody who’s the administrator of an adolescent psych unit. And one of the things that’s a theme is that, on the one hand, they don’t have enough capacity, and on the other that for the capacity they have trouble staffing it. Remarkably, somebody can call your number anytime and get somebody. It’s almost unheard of. How does matching resources with demand, capacity with demand, what are those struggles for you? Or are they?

Dorothy Cucinelli: I talk with various leaders from these organizations in our network and others almost every day. I hear we’ve got vacancies, and we can’t fill them due to staff shortages. It’s a national crisis. I don’t use the word crisis often, but it’s a big problem. Many people left the field during and immediately after the pandemic due to burnout, family issues, etc. There aren’t enough people coming in the pipeline to replace them. I think part of the reason is that the pay level in this field is not competitive. It’s terrible. Who will get a master’s degree in social work, spend all that time and money, and then get a job that pays less than you would get for many other professions requiring the same education level? You must be dedicated. And then deal with all the stress that comes with the job afterward. It takes a lot for people to enter this field; I don’t think many people recognize that. But it’s a very demanding field, and there just are not enough. And I’m not just talking about social workers. I include psychiatrists and peers. It’s everywhere. It’s just terrible. Can we match resources to demand? It’s an ongoing issue. It’s not just a matter of here. We’ll give you the money. Create a program. Can you find the people to staff that program? In a grant application recently, as a network, we discussed a significant drawback because the agreement required staffing that was difficult for us to meet. Everybody is struggling with that. So, I don’t have an answer. Suppose somebody threw a lot of money at these positions and magically raised the salaries, got more doctors to choose psychiatry, and increased pay levels. In that case, it would go a long way toward easing the crisis. But honestly, I don’t see this easing up anytime soon.

Maximize access 25:19Health Hats: I imagine that if your promise is access and there isn’t the capacity to care, that’s disappointing for the carers and the people seeking care.

Kelly Lane: The project does have processes and systems in place to help maximize the availability of providers across the network. So as folks are getting referred to services, there’s a program called Matters, the referral-based platform with real-time availability of those outpatient providers. The individual can get matched with a location, referral to their community, and a provider with confirmed availability. That’s helped match people to available prescriber resources.

From the web https://cbhnetwork.com/coast/Health Hats: After the call, I asked Dorothy to tell me more about the process. She said, Basically, our project (COAST) connects people who call the 800 number for COAST to a prescriber. The client is also connected to a COAST care manager who helps the client find follow-up and continuing care after the COAST Prescriber gives the immediate prescription. The MATTERS platform, New York State-sponsored, lists various providers all over the state, including our area. Available appointments are on the platform so a client can get signed up for care through that platform with the help of a care manager immediately instead of the client having to call the provider for an appointment- which avoids the run-around a lot of people go through. Also helps to get people immediately connected to follow-up which is important because without that hand off many people would just take the script and not follow through with additional care.

Health Hats: Young adults grow into adults. How does COAST Network maintain a pipeline of peer support as people age?

Kelly Lane: Most peers in our network are peers that serve adults. The most significant challenge is identifying peers to serve young adults and adolescents, so the challenge is on that end, not on service to adults as they age.

Kelly Lane: We didn’t touch on folks’ ability to connect by phone, in person, or via telehealth. If you are outside the Tri-County area, the Capital District and you don’t have transportation. You still need help. How do you get connected to a prescriber? Right? COAST can talk to you over the phone. For example, they can interact with you over Zoom and still get you the help you need.

Prevention 28:59Dorothy Cucinelli: I would say there’s one other part of the program that we didn’t talk about too much, which is the prevention piece. Two programs included in this grant are called Teen Intervene, a program for teens and their parents to come together and learn strategies for better communication. And there’s Strengthening Families which has also been successful. So those are two program components we have not touched on too much.

Kelly Lane: They are valuable evidence-based programs seeing great results in the short time we’ve been funding them in this region.

Marketing programs 29:49Dorothy Cucinelli: Also, regarding how people access this. As Kelly said, once they know about the program, they can connect in several different ways. But getting the word out on the program has been something that we’ve spent a lot of time and effort on. Because if people don’t know you have something, you might as well not have it. Marketing often gets lost, is thought of as frivolous, or we don’t have the funds, but our marketing efforts have shown us how important that is. We’ve got data on where calls originate. Not by the individual, of course, but where calls come from geographically. It helps us to pinpoint our strategy so that we’re reaching people most effectively. It’s been great.

Health Hats: Thank you. The conversation has been outstanding. Request: could you send me any links that you know? I have an international audience. People like to learn about what works even if they can’t get it because agencies struggle with this wherever they are located. And people want to hear what’s working for others. You’re onto something.

Dorothy Cucinelli: I just want to say, too, Danny, I appreciate you doing this for us because it helps to demonstrate to our grant funders at the state that we’re using innovative ways to get the word out. Yes. I don’t know that anybody’s doing a podcast interview. I just wanted to thank you for that. And the other thing is the Matters program that Kelly mentioned. Might be something that you might want to do another interview.

Health Hats: I increasingly think about how people take in information. That started with thinking about people who are hard of hearing or visually challenged. I started as a blogger, and then I went to a podcast, and I realized that there were people who read primarily, they’re people who mainly listen, and there are people who watch. I’ve been producing YouTube videos of the episodes as well. I claim no rights to any of my work, and you are free to use it. Dorothy, if you’d like me to pull specific clips so that you can use them in marketing, I’m happy to do that. Let’s think about that down the line.

Thank you so much, Dorothy. As always, I love seeing and talking to you and meeting you, Kelly, and we’ll talk again. Okay. Take care.

Reflection 33:34Photo by Clark Tibbs on Unsplash

You might think I am most excited about the warm handoffs in 24/7/365 live-person access. You’d be wrong. Well, actually, I do value that tremendously. But the last bit about marketing resonates most with me. Throughout my career, I’ve emphasized marketing in, for, about services, ideas, and leadership in all aspects of healthcare – governance, operations, research, quality, outcomes, and measurement. Other than surgery and drug therapy, which are core to the medical model of healthcare, everything else, culture, public health, prevention, habits, and lifestyle depend on marketing. I define marketing as knowing and listening to customers and target audiences, strategy, analytics, writing, and storytelling. I appreciate Dorothy’s emphasis on marketing. Although I emphasized marketing throughout my career, I was underwhelming everywhere at marketing marketing. So sad.

I wonder if COAST is a hyper-local solution, or can it be generalized? Certainly, collaboration over competition, live phone attendants, 24/7/365 access can be generalized. But the flavor, the infrastructure, the process, and the participants need to be local.

Lastly, although COAST does not emphasize emerging adults, its focus is adults, the service includes emerging adults, and the model can serve emerging adults. I’m grateful to Dorothy Cucinelli and Kelly Lane for sharing.

Podcast Outro 25:39I host, write, edit, engineer, and produce Health Hats, the Podcast. Kayla Nelson provides website and social media consultation and manages dissemination. Leon van Leeuwen edits the article-grade transcript. Joey van Leeuwen supplies musical support, especially for the podcast intro and outro. I play bari sax on some episodes alone or with the Lechuga Fresca Latin Band. I’m grateful to you, who have the most critical roles as listeners, readers, and watchers. See the show notes, previous podcasts, and other resources through my website, www.health-hats.com, and YouTube channel. Please subscribe and contribute through my Patreon page patreon.com/healthhats, also listed in my show notes. If you like it, share it. See you around the block!

Episode NotesPlease comment and ask questions

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, Twitter, Mastadon to @healthhats

CreditsMusic on intro and outro by permission from Joey van Leeuwen, Drummer, Composer, and Arranger including Moe’s Blues for Proem and Reflection

Web and Social Media Coach, Dissemination Kayla Nelson @lifeoflesion

Leon van Leeuwen edits the article-grade transcript.

Intro photo of Vulture Couple by Rich Rieger used with permission

Photo by Helena Lopes on Unsplash wraparound

Photo by Clark Tibbs on Unsplash do something great

Sponsored by AbridgeBiosDorothy Cucinelli is CEO of Capital Behavioral Health Network, an independent practice association in northeast New York. CBHN members comprise a network of 30 mental health and substance abuse service organizations that offer services across the spectrum of care from inpatient to outpatient services, prevention, and peer support. Prior to her role at CBHN, Dorothy was the CEO of Equinox, a community services organization in Albany. She oversaw the merger of Equinox with ClearView Center, where Dorothy served as Executive Director. Dorothy has held other leadership roles in healthcare, including regional operations director for a managed care company and administrator for an academic medical practice. Her interests are in improving the lives of people with mental illness and substance abuse by creating new service delivery options that are data-driven and focused on measurable results. Dorothy earned a Ph.D. in management from Northcentral University, an MBA from Cornell, and a BS from Tufts. She is an SHRM-certified HR Professional.

Kelly Lane, MSW is the Director of Regional Projects at the Capital Behavioral Health Network. In her role, she brings together partners to implement and fine tune multi-county and multi-provider projects that improve services for those in the region. Kelly holds a master’s degree in social work from Syracuse University and has worked across New York State in the behavioral health field for over a decade.

Inspired by and grateful to Robert Doherty, Betsy Neptune, Russell Bennett, Lynn Wilson

LinksCOAST link

Capital Behavioral Health Network website: CBHN website

Mental Health Association of Columbia Greene website: MHACG website

Related podcastsSeries: Pediatric Transition to Adult Care

Promotoras, Community Health Workers Rule!

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Hey there. As one of my blogging, podcasting, and vlogging cronies, I’m excited to share a sneak peek of a big upcoming launch with you and see what you think.

For the past few weeks, I’ve been working on a Patreon page so that I can earn some more ongoing revenue through my fans to help me keep the lights on. With Patreon, fans can pay a small amount of money each month in exchange for some bonus rewards. The “About” tab tells you more.

Free will remain an option. https://health-hats.com/free/.

Some people may wish to donate one time. The link for that is Support Danny’s podcast

I’ve launched my page, but it isn’t finalized. Go to https://www.patreon.com/HealthHats. Click on the “About” and “Membership” tabs. I’d love to hear any feedback you have about it before I make it live for the world.

Specifically,

Does everything make sense? Is it clear what Patreon is and what fans get out of joining my community?
What do you think of the rewards?
Do any, in particular, stand out as things you would join Patreon for?
Is there anyone you think I should connect with to help spread the word once I launch?

Thanks for letting me know what you think. I’m excited to get the Patreon service off the ground and couldn’t do it without the support of friends, and family like you.

I’ll be sending out an email to my mailing list subscribers once I launch. So feel free to add your email here if you’d like to stay in the know without becoming a patron. I’m looking forward to incorporating your feedback into my final page. Thanks.

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Introducing you to my new Patreon page so that I can earn some revenue to help me keep the lights on. Fans can pay a $small amount each month for bonus rewards.

We respect Listeners, Watchers, and Readers. Show Notes at the end.

Watch on YouTubeReadThe same content as the podcast, but not a verbatim transcript. A newsletter-like version with images. Could be a book chapter. download the printable transcript here

Episode NotesPlease comment and ask questions

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, Twitter, Mastadon to @healthhats

CreditsThe views and opinions presented in this podcast and publication are solely my responsibility and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors, or Methodology Committee. Danny van Leeuwen (Health Hats)

Sponsored by AbridgeCreative Commons LicensingThe material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines.

The ShowHey there. As one of my blogging, podcasting, and vlogging cronies, I’m excited to share a sneak peek of a big upcoming launch with you and see what you think.

Free will remain an option. https://health-hats.com/free/

I’ve launched my page, but it isn’t finalized. Go here. https://www.patreon.com/user?u=8382489. Click on the “About” and “Membership” tabs. I’d love to hear any feedback you have about it before I make it live for the world.

Specifically, Does everything make sense? Is it clear what Patreon is and what fans get out of joining my community?

What do you think of the rewards?

Do any, in particular, stand out as things you would join Patreon for?

Is there anyone you think I should connect with to help spread the word once I launch?

Thanks for letting me know what you think. I’m excited to get this off the ground and couldn’t do it without the support of friends, and family like you.

I’ll be sending out an email to my mailing list subscribers once I launch. So feel free to add your email here https://health-hats.com/free/ if you’d like to stay in the know. I’m looking forward to incorporating your feedback into my final page. Thanks.

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Dr. Joel Hudgins muses on up and downstream changes to Peds ED for emerging adults with mental illness. Higher numbers & acuity, too few beds, services, & staff

We respect Listeners, Watchers, and Readers. Show Notes at the end.

Watch on YouTubeReadThe same content as the podcast, but not a verbatim transcript. A newsletter-like version with images. Could be a book chapter. download the printable transcript here

ContentsProem.. 1

Update on Mighty Mouth Casey Quinlan. 2

Podcast intro. 2

Health is fragile. 2

Crossing the threshold into the ED. 2

How can we help up front?. 3

Upstream and downstream issues 4

Can we really help? It takes a toll. 4

A word from our sponsor, Abridge. 5

System interventions/solutions. 5

Hopeful, hopeless 6

Real people all around. 6

Profound knowledge. 7

Academic medical center versus critical access hospital 7

Reflection. 8

Next: Episode #8: COAST. 8

Podcast Outro. 9

ProemIn this series we’ve met Emeka and Annie, two emerging adults with mental illness and Emeka’s mom, Erika. We learned about their ‘something’s wrong’ experience, finding treatment, family dynamics, and recovery. We met Matt, a high school teacher leading a student-run welcoming Ambassador program, and Dr. Bonnie, a primary care doc, managing the care of emerging adults with developing and full-blown illness with limited resources. You can see that I’m starting in the center with lived experience and spiraling out.

Photo by razvan-mirel-xhYhjMIfsq8-unsplash

Welcome to today’s episode, #7 in the series, of the lived experience of another professional, Dr Joel Hudgins, pediatric emergency physician at Boston Children’s Hospital. Full disclosure, I worked from 2002 to 2008 at Boston Children’s leading their patient family experience initiative and I worked as a nurse/paramedic at two rural hospitals in West Virginia in the late eighties, early nineties. Despite my experience in pediatrics and emergency services, I feel out-of-touch with the dynamics of treating an increasing proportion of youth with mental illness while also faced with exploding infectious disease incidence, COVID, RSV, and flu. Emergency care and pediatrics are near and dear to my heart. Let’s see what we can learn with Dr. Joel Hudgins.

Update on Mighty Mouth Casey QuinlanBefore we begin, I published my last episode on April 1, 2023, the mashup of my chats with Casey Quinlan. Many subscribers reached out to me. Is Casey alive or has she passed? I purposefully left it ambiguous because I didn’t know when people would be reading, listening, or watching. Besides, Casey told me several times over the years when I called her about various deaths in my family, why do funerals and memorial services need to come after death? Anyway, as of today, April 12, 2023, Casey lives in a hospice, with several visitors a day, alert for short periods of time, still snarky. Go to CaringBridge.com, for up-to-date information from Jan Oldenburg.

From Health Hats, the Podcast https://health-hats.com/pod193/

Health is fragileHealth Hats: Thank you so much for joining us. We need your perspective as an emergency room doc. Why don’t you introduce yourself by telling us a little about when you first realized health was fragile?

Joel Hudgins: That’s an excellent question. I grew up in rural Texas, and my granddad was a general practitioner there. I still remember going around with him back in the early eighties. He would do times where he would go to people’s homes, or he had attending privileges at various hospitals. So, I would accompany him on some of his trips. As I look back, I didn’t realize it at the time, but I think what interested me was his ability to connect with people uniquely. As part of that, you asked when I learned health was fragile. I think that was probably my exposure to sickness and people who died. I believe that relationship seemed so unique and resonated with me and was something that I think ever since I did that with him when I was young, it felt like that was the path I wanted to go down.

Crossing the threshold into the EDPhoto by Gary Lerude on Flickr/Creative Commons

Health Hats: Great. As an emergency doctor, how do people with behavioral and mental health crises come to you? What is it that you see that comes in the door?

Joel Hudgins: So, I think to answer that, you must take a little bit of a step back to where when I trained, I did my residency in Colorado and my fellowship here in Boston. We did not see this in this way at all. We certainly saw a few patients with mental health crises or behavioral health issues, but it was the minority, and I didn’t even think about it then. What we’ve seen over the last decade, but significantly ramped up in the previous four or five years, and then ramped up even more after Covid has just been teens and tweens in complete crisis—the question of why is so multifactorial. I think what we see is a cohort of patients that vary. So, you can see patients who come in that are suicidal and at high risk for suicidality, and those patients you keep in the ER until they have a place to go because they’re not safe to be at home.

Then you have patients who have behavioral dysregulation. Those may be patients who have other comorbid medical conditions or kids that may have autism, and the families are just really struggling to get the behavior under control. We see kids that come in with eating disorders that are overlaid with things like depression or suicidality. We see patients who have issues at school and feel like the school cannot handle some of their behaviors or their behaviors at home aren’t able to be addressed. We see kids with severe anxiety and TIC disorders. We’ll probably talk about the various reasons, but it does feel like the ED and the ER have become the place to coordinate a lot of the care for these kids, which is not a role we were prepared for. We’ve responded as best as possible, but that shift, or transition has happened over the last few years.

How can we help up front?Health Hats: So, what can you do to help?

Joel Hudgins: It’s a great question, Danny. I think this is where we run into some, I don’t want to say dissatisfiers, but this is an area where I think we feel a little bit unprepared or overwhelmed. An ER is not designed for what it’s being asked to do for these patients, and that’s not the fault of the patients or the ER. It’s just a mismatch, and we’ve made solutions the best we can. And so, what we can do is, and what we’re very good at, is assessing if this patient is safe to go home. Is this patient high-risk enough to need to be kept here in the emergency room with a plan to admit them to a psychiatric facility at some point?

We’re good at that initial evaluation for patients who come in crisis for discerning. If this is a medical thing or a psychiatric problem, you know that there’s an overlay discerning the medical clearance of patients. We’re very good at that. That’s a skill that I think most emergency medicine providers have.

We’ve set up some resources for patients who leave. We’re pretty good at providing some discharge instructions for providing resources as an outpatient for connecting people to things they may not have had access to before they came to see us. We struggle when you turn the ER into more of an inpatient facility and keep behavioral or mental health patients in crisis in the emergency room for weeks. We’re just not great at that. And we’re getting better. But the reality is we’re not docs that train for that. The nurses in the ER are not nurses that came into the ER with the idea that we’re going to daily rounds on behavioral health patients. We’re going to keep them, do therapy, and titrate medications. All this stuff is not over our heads but is new to us. I think those are areas we struggle with, but there are some things we do well. But they’re usually in that upfront kind of initial evaluation part of things.

Upstream and downstream issuesHealth Hats: Is the reason that people are you’re providing inpatient services in an emergency setting that there, there’s a shortage of places for people to go?

Joel Hudgins: It’s the way I think about it is it’s a little bit on both sides. So, the input to our facility has gone up. So, the number of behavioral health patients in crisis or mental health patients in crisis has increased. There’s no doubt about that. You look nationally, and that’s true across almost every pediatric hospital. So that number’s increased. Some people have argued that the severity of illness of those patients is also higher. So, things like the degree of suicidality or the degree of their crisis seem to be more than it was ten years ago or even five years ago. So that means those patients need more help and probably need an inpatient level of care more than they did in the past. The other piece of it is precisely what you said on the output side, where there are just not as many beds, and there are not as many places for these patients to go. We just don’t have the space for it. You can’t get the nurses and docs there. You can’t get enough social workers to open all the beds. So, I think there’s a dearth of rooms on the far end to get them in, to get those patients to where they need to go. And so that leaves this one place. And we are almost a holding center for those patients until those beds open, which can be weeks. And so that leaves this one place. And we are almost a holding center for those patients until those beds open, which can be weeks.

Can we really help? It takes a toll.Health Hats: I’m thinking about being a nurse or the doc. It must be so disheartening to know what somebody needs and not be able to provide it. I remember when I’d opened my jump kit or the crash cart in my ED and paramedic days, something would be missing. Yeah. And I could deal with whatever came through the door, but when I was missing an important tool, that threw me for a loop. It seems you guys are dealing with that day in and day out, like knowing what you need to do and not having the tools to do it. That must be like, how do you stay sane?

Joel Hudgins: What you said just hit it precisely on the head, which is the thing that I don’t think we’re accounting for. At least we are now beginning to understand more about it, at least at our facility in Boston. The toll that it takes on providers is substantial. It’s precisely what you’re saying. We know we aren’t the right place for these patients. We’re not doing the best things for them, right? Nobody thinks the best thing for you if you’re suicidal is to sit in a dark ER room alone with no phone or contact for two weeks. Nobody thinks that’s the right solution.

Health Hats: Like solitary confinement.

Joel Hudgins: Yeah. It’s caught us off guard a little bit. I think we’ve tried to add some things and some therapy options, and we’re trying to do this stuff, but it’s also in the setting of you’re trying to do that amidst all these sick patients medically, who need attention and insight and all these other things.

You’re right that it takes a toll on people when you’re restraining a child. You must involuntarily give them medication or hold them down because they’re aggressive. In some ways, you’re concerned that your environment is triggering that, yet you continue to have them in that environment. That’s an upsetting thing for people. We’ve had a ton of nursing turnover, not just here nationally. And I do think this, that is part of it. I think people feel we’re not doing our best for these patients. It’s tough to be a part of that and watch it. I guess the other alternative is you can try to improve it, and that’s what we’re doing, but there’s no doubt that it sits hard with us.

A word from our sponsor, AbridgeNow a word about our sponsor, ABridge. Record your healthcare conversations with doctors and other clinicians with ABridge. Push the big pink button and record. Read the transcript or listen to clips when you get home. Check out the app at ABridge.com or download it from the Apple app store or Google play store. Let me know how it went.

System interventions/solutionsHealth Hats: What are the system interventions, actions, or collaborations? What do you think would help this?

Joel Hudgins: That’s a great question, and a lot of that stuff, as you may imagine, the ER is downstream, right? So, when they get to us, in my opinion, things have already failed. I’m not saying you should view a visit to the ER as a failure, but in some ways, some kids are so severe that they need to go to the ER, but there are a lot of kids that, if they had more help upstream, things wouldn’t have ended up like this. If there were more mental health providers, if they had more accessible access to mental health providers, and if the supply was more, I think you would avoid a lot of what we see where kids end up where they are. From our standpoint, I think setting aside specific observation units solely devoted to mental and behavioral health patients where the care is standardized and the multidisciplinary aspect is crucial, where you must have psychiatrists in the emergency room. You must have mental health workers in the ER. You must have behavioral response teams in the emergency room. To be able to do all these things, you do need a dedicated space because of what I just said.

If your department’s full of insight, you will have nurses pulled for other things. For sick patients who need care right then, it’s not ideal for that. So, I think from our standpoint, we can certainly design the care model a little differently where we deliver care in a more standardized, less variable way.

And then on the other side, so that’s the input and then the ER, and then the output, it seems easy to say, and there are subtleties to this that I’m sure I don’t know. But if we could staff the beds that we do have, if there were enough reimbursement to encourage people to go into these various fields that care for these patients, then that would be a huge win. We’re trying to add physical space up here, at least to Children’s. The depressing thing is to think we’re going to add all these rooms and potential facilities, and yet, if there’s nobody to staff those things, does it matter? So certain investments need to happen because of this too. I think all three of these areas need work.

Hopeful, hopelessHealth Hats: I’m overwhelmed. It is interesting. As I told you earlier, I’ve talked to maybe a dozen people. What’s interesting so far is that speaking with people who are part of the healthcare system feels depressing and hopeless. It feels much more hopeful when I talk to people with lived experience, their parents, some of the community organizations, and some teachers who have done some inspirational stuff.

People are islands of excellent stuff. Then there is just so much that isn’t. So, the people are like, why am I doing this? Why am I Health Hats, and what do I advertise myself as? I know a little about a lot of healthcare and not a lot about that much.

Joel Hudgins: I’m an ER doc. What’s that? We know a little about a lot.

Real people all aroundHealth Hats: I felt that as an ER nurse. I think that I’m never really going to be a pediatric expert. I will never be a behavioral health expert, although I’ve worked chiefly administratively at Boston Children’s and in behavioral health. I’m old, and I’m at the end of my career. I’m not at the beginning or the middle. I can give it a face. These are real people this is happening to. These it’s parents, its young people, its doctors, its nurses, its people. These are real people doing real work. A better understanding of real work. So, what do you think about my audience? It is varied. Patients, caregivers, clinicians, and data geeks. So, what do you think? What advice do you offer as people struggle, learn, and advocate?

Joel Hudgins: That’s a great question. I think that is the most significant thing, and I say this because I’ve had these experiences with my family. I don’t think people understand how this affects patients, caregivers, care teams, and providers. I’ve talked to my brothers about this, and neither one is in medicine, they just have no idea. They don’t understand that in our emergency rooms, there were times in the last year when of our 45-bed main ED, 34 patients were behavioral health or psych border.

So that is a stressor. Then we’ve had record volumes with the various viruses going through, flu, RSV, and all these other than covid. We’re now funneling these huge volumes through tiny spaces. We’re creating offsite spaces to see patients not designed for emergency department care.

Profound knowledgeSo, I just think until people talk about that stuff, it really, you just don’t, you don’t appreciate it or understand it. I think parents of kids, especially older kids, understand that more of this is happening, I suppose anecdotally from their children. I believe that stuff like this, where you’re talking about it and sharing people’s individual stories, is critical because nothing will change if there’s no attention to it. I’m convinced of that. I think you’re doing fantastic work just by talking about this and having a series on this, and that’s key.

In terms of other things, we’ve done a little bit of research where we’ve started to look at ED visits. We just did a paper examining whether patients are more likely to get restrained than other patients in the emergency room and how eating disorder volume has changed. This has been done, but emergency room visits for behavioral health problems show how that’s climbed and predictors of restraint use. This is still relatively new for the data geeks on the call. Even though it’s not that new anymore, there’s still room to do things around data and to show different trends and the impact of this on care.

And so that I think is critical. Then, at the provider level, I think sharing what different emergency rooms are doing to treat these patients and what care models are unique or novel in publishing those things, getting them out there so that we can learn from them. It is essential for something like this, where we’re all looking around at the right way in different hospitals to do it. Everybody does it a little bit differently. So, is there a model that works better? Disseminating that in some manner would be super helpful. Encouraging collaboration would be beneficial.

Academic medical center versus critical access hospitalHealth Hats: Just think about the twelve-bed hospital where I was the emergency room nurse. I have no idea if they’re even still open. How would they be managing this insanity in central West Virginia? I can’t even imagine.

Joel Hudgins: Danny, it’s those providers that I worry about. The big pediatric hospitals. It’s a huge issue, but we have the resources to figure this out and expertise. The community ED has eight beds, and four of them are taken. They don’t have psych there. They don’t have resources. So yeah, you’re exactly right. That’s where I lose sleep, honestly, in those community emergency rooms where the care they’re being asked to provide, they’re just not equipped for.

Health Hats: Have a good holiday.

Joel Hudgins: All right, Danny, thanks a lot. It was nice to meet you.

Health Hats: Likewise. Take care.

ReflectionPhoto by Luis Sánchez on Unsplash

Emergency Departments best provide temporary, front-loaded care: assessment, triage, stabilization. Move ‘em in, move ‘em out. As a paramedic/ED nurse, I appreciated the temporary nature of emergency patient/family relationships. Boarding and ongoing treatment of acutely ill people was not our forte. When I moved on to intensive care, it took some adjustment.

While I enjoyed the longer period of care, I had to draw on a different set of relationship and planning skills. Not as deep relationships as home care, but more than brief and intense in the emergency department. Dr. Joel mentioned the stress of staff unable to provide the best care they know their patients and families need.

Photo by Stormseeker on

We’ve heard this theme before during our chat with Dr. Kiame Mahaniah. I can’t help but wonder how Covid burnout combines with the increasing private equity taking over emergency department staffing impacts the treatment of emerging adults with mental illness. Perhaps we could do an episode about that in the future? Thanks to Dr. Joel for this glimpse into a day in the life of a pediatric emergency physician.

Next: Episode #8: COASTHealth Hats: Our next, eighth, episode in the Emerging Adults with Mental Illness, will feature COAST, Coordinated Opioid and Stimulant Treatment, a network of specialists to provide prevention, treatment, and recovery services instantaneously.

Dorothy Cuccinelli: We cover the eight counties in that region, so to the Massachusetts border and west, and then up north to what’s called the North Country, to the Adirondacks and south to the Catskills. It’s a big geographic area with quite a mix of demographics, everything from people in the cities to very rural locations. One of the challenges we’ve been able to meet successfully is establishing ways for people to access this program regardless of where they live.

Photo from https://cbhnetwork.com/coast

It’s unique in the sense that, as Kelly just said, it’s a phone line so people can call this number 24/7 365. They are connected immediately with a prescriber, someone who can write a prescription and get that person connected to medication assisted treatment right away. The prescription goes to the pharmacy. If the person doesn’t have the means to pay for that medication, our grant program also covers that. We can even arrange for transportation to get the prescription to that person. We use the term wraparound services a lot in the mental health field because it covers a lot of different bases that individually sometimes aren’t there. And if any one of those pieces are not in place, the whole thing doesn’t work.

Podcast OutroI host, write, edit, engineer, and produce Health Hats, the Podcast. Kayla Nelson provides website and social media consultation and manages dissemination. Leon van Leeuwen edits the article-grade transcript. Joey van Leeuwen supplies musical support, especially for the podcast intro and outro. I play bari sax on some episodes alone or with the Lechuga Fresca Latin Band. I’m grateful to you, who have the most critical roles as listeners, readers, and watchers. See the show notes, previous podcasts, and other resources through my website, www.health-hats.com, and YouTube channel. Please subscribe and contribute. If you like it, share it. See you around the block.

download the printable transcript here

Episode NotesPlease comment and ask questions

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DM on Instagram, Twitter, Mastadon to @healthhats

CreditsMusic on intro and outro by permission from Joey van Leeuwen, Drummer, Composer, and Arranger including Moe’s Blues for Proem and Reflection

Web and Social Media Coach, Dissemination Kayla Nelson @lifeoflesion

Leon van Leeuwen edits the article-grade transcript.

Intro photo of Vulture Couple by Rich Rieger used with permission

Photo of spiral by Razvan Mirel on Unsplash

Photo of ED by Luis Sánchez on Unsplash

Photo of ICU sign by Nicholas Bartos on Unsplash

Photo of burnout by Stormseeker on Unsplash

Sponsored by AbridgeInspired by and grateful to Dick Argys, Jan Oldenburg, Casey Quinlan, Dorothy Cucinelli, Kiame Mahaniah

LinksGo to CaringBridge.com, for up-to-date information on Casey Quinlan from Jan Oldenburg

Dr. Joel Hudgins, Boston Children’s Hospital

increasing private equity taking over emergency department staffing

Related podcasts

Leadership in a Health Center. Managing Manageable Stress.

Series: Emerging Adults with Mental Illness

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In mid-March Casey didn’t sounds lucid or humorous and she couldn’t spin a yarn or offer wisdom. I’m grateful for her impact on the patient-caregiver movement.

Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post.

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This episode can be watched on YouTubeEpisode NotesPrefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here

Contents with Time-Stamped Headingsto listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)

Proem.. 2

Healthcare is Hilarious intro 00:44. 2

Health Hats, the Podcast intro 01:20. 2

From Episode#127 Healthcare is Hilarious, with Mighty Casey Quinlan. Jun 6, 2021 01:59. 3

Feel like I’ve been shoved through a pipe 02:38. 3

Mobility 04:49. 4

Bemused about dying 06:34. 4

Bored with the new you? 07:51. 5

Not alone 08:55. 5

From episode #132: Healthcare is Hilarious. Continuing Mets Saga. Hospital. Home. 09:41. 5

Pain management 11:16. 6

Recognize privilege 13:10. 6

Hospitalists and coordination of care 14:35. 7

A word from our sponsor, Abridge 16:06. 7

Episode #139: Normal, A Dryer Setting with Mighty Casey Quinlan 16:49. 7

Steroids, love ‘em, hate ‘em 17:30. 8

Leaping tall buildings 19:20. 9

Engaged with sax – changing capabilities 20:16. 9

Patient hackers adapting 21:36. 9

Not quitting till I’m dead 23:26. 10

Episode #181: Might Casey Unplugged 24:00. 10

Health update – not great 25:27. 11

Crying over spilled hair? 27:43. 11

Spiritual Health 30:27. 12

Death by a thousand pilots 31:52. 12

Busting down silos 36:07. 13

Colossal challenge 37:02. 14

Reflection 39:25. 14

Podcast Outro 41:23. 15

Please comment and ask questions

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, Twitter, to @healthhats

CreditsMusic on intro and outro by permission from Joey van Leeuwen, Drummer, Composer, and Arranger including Moe’s Blues for Proem and Reflection

Web and Social Media Coach, Dissemination Kayla Nelson @lifeoflesion

Leon van Leeuwen edits the article-grade transcript.

Intro photo of Vulture Couple by Rich Rieger used with permission

Photo of fire by Ani Kolleshi on Unsplash

Photo of fist by Dan Burton on Unsplash

Photo of silos by Ricardo Gomez Angel on Unsplash

Photo of ice cream by Food Photographer | Jennifer Pallian on Unsplash

Sponsored by AbridgeInspired by and grateful to Jan Oldenberg, Geri Lynn Baumblatt, Fred Trotter, Claire Sachs, Lygeia Ricciardia, and hundreds of others

LinksIn hospice, Mighty Casey receives SPM’s “Doc Tom” Award

Related podcastsEpisode#127 Healthcare is Hilarious, with Mighty Casey Quinlan.

Episode #132: Healthcare is Hilarious. Continuing Mets Saga. Hospital. Home. (health-hats.com)

Episode #139: Normal, a Dryer Setting with Mighty Casey Quinlan #139 (health-hats.com)

Episode #181: Mighty Casey Quinlan Unplugged #3 | Danny van Leeuwen Health Hats (health-hats.com)

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The ShowTo view all the images in the article go HERE

ProemHealth Hats: My friends and cronies, a quiet Mighty Mouth, Casey Quinlan, is deafening. We’ll need some time to get used to it. Meanwhile, let’s watch and listen to clips from four podcast episodes Casey, my dear friend, supporter and ruckus-making partner and I jointly published when one or both of us felt like crap, but had enough energy between us to share something with our loyal followers. Brace yourselves for some bittersweet moments. I needed a hankie while producing.

Healthcare is Hilarious introMighty Casey: Hey, hey, hey, ladies, gents, and gender-fluid friends. It’s time again for Healthcare is Hilarious. Yes, it’s me, Casey Quinlan, Mighty Casey on the Interwebs with another snark-filled hot take on healthcare. Let’s make fun of the ridiculous, give credit to the awesome working, always to make you laugh and think at the same time.

Health Hats, the Podcast introHealth Hats: Welcome to Health Hats, the Podcast. I’m Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all of this.

From Episode#127 Healthcare is Hilarious, with Mighty Casey Quinlan. Jun 6, 2021Health Hats: We’ve spoken every few weeks. Casey hasn’t been feeling well. She hasn’t been publishing her podcast. She recently discovered recurrence of her breast cancer with metastasis. We agreed to record a chat, I’d edit, and we’d both publish it. We recorded on May 28, 2021. Casey published the same day. Danny van L + Casey Q sittin’ around talking. I published on June 6th. See links in the show notes.

Mighty Casey: Greetings and salutations.

Health Hats: Greetings. I love seeing you.

Feel like I’ve been shoved through a pipe

| Figure 1: Woman coming out of a tube as sculpture created with DALL.E |

Mighty Casey: It’s not bad to be seen. I will say that I’m not feeling like myself lately. It’s not that I’ve been hiding out, but I haven’t had the bandwidth, and the emotion to be as much of a public persona as I typically am. Also, because I have very little understanding of what the fuck is even going on. I know what’s going on, but I don’t know the outcome or the impact of what I’m doing and whether that’s having any effect on my overall survival. No one knows, and we won’t know for a while. I feel like I’m being shoved through a pipe, and here I am in the pipe.

Health Hats: So, talk a little bit more about, what does that mean, being shoved through a pipe?

Mighty Casey: For those who may be coming to this cold, I have spent the last year, or since August of last year, chasing what appeared to be a back problem that just was bedeviling me and didn’t seem to be giving into physical therapy or exercise or any of the usual stuff. As a result, nothing worked, and everything made it worse. The stuff that had typically fixed it previously. It only made it harder to do things like swimming, et cetera. and so that was disturbing. In early March, an MRI revealed that there was some metastatic mess going on in my lumbar spine. So, I was like, oh, really? It turns out I have a recurrence of breast cancer. So here I am with the metastatic cancer diagnosis and still have terrible mobility issues. I’m still not fixed on the spinal side. There’s some argument from both my perspective and the professional perspective about how much of this is due to the cancer process and how much of it is a separate issue that has to do with the fact that my spine is a mess. I think it’s a little bit of both. Sitting isn’t terrible, but I do need to move around.

MobilityHealth Hats: So, the ways to move around are to be carried, to be in a chair, or to walk. It sounds to me like you’re saying that any of that in large doses is problematic.

| Figure 2: from AcademyHealth.org in 2018 |

Mighty Casey: As I said, getting in and out of the house is an adventure. I do it, but the stairs out front are a thing. And again, it’s not something I want to do more than once a day. Usually, I try to limit out-of-the-house medical appointments to either once a day or put them in a clump and then leave the house and then go out once and come back once, and that’s it. Right now there’s not a lot going on. I went, and I had radiation treatment for a couple of weeks, and that was a daily deal.

Health Hats: Oh, so it was like trying to get outside every day and navigating the steps and all that.

Mighty Casey: My sister’s here, which has been an absolute blessing because otherwise I’d be screwed.

Health Hats: Because you live by yourself.

Mighty Casey: Yeah, I do live alone right now, and I am not really able to live alone just because of the mobility stuff. Yesterday I went back to the spinal specialist that I had been planning on working with until we got the metastatic cancer diagnosis, and surprise, I’m back, in March. And so, I reopened that conversation yesterday, and it’s OK. Now that we’ve gone down the cancer rabbit hole and are doing all that, that’s ongoing. How about we readdress the idea that Casey might be able to get up and fucking walk again? At some point, let’s not ignore that.

| Figure 3: Bemused, pissed off women created by DALL.E |

Bemused about dyingHealth Hats: Are you pissed off?

Mighty Casey: I wouldn’t say I’m pissed off. More like I’m bemused.

Health Hats: Bemused. I like that word.

Mighty Casey: Not pleased. We’ll just say that Casey is not pleased with the idea of a stage four cancer diagnosis. But again, because I know so many people who have been on the receiving end of those various types, it’s not like I feel as though I’m the only schmuck in the universe that’s gotten stuck with this, not even close.

Also, it’s like I’m supposed to go home and die now. I mean, death is inevitable for all of us, and who knows? I could be seeing the end of my line as it were, but not as though that’s happening this week or even this month. I’m not feeling as though I’m about to shuffle off, but who knows? Death is an inevitable outcome for all of us. No one gets out of here alive, and in case you miss the memo. It’s still only a theory. It’s not something that I figure is happening this week. Or even this month. Or possibly even this year. But the fact that I’m now at the point of eyeballing my mortality pretty squarely. It’s like, how are you doing? How are you? Guess what?

Bored with the new you?Health Hats: So, are you bored? Since you’re such an active person.

Mighty Casey: We’ll say that. Not being able to do much is not my usual, which is wearing me out that I’m tired. I’m just full-on tired, but I’m also tired of not being able to move and the feeling of being nailed to the perch, but I have to hope that it’s at least addressable. And so that’s where I’m sitting in my head right now. Find the problem you can solve and then go for that or find the problem you can attack, whether or not curing metastatic cancer. Maybe there’s a big eraser, and maybe this eraser that we’re using, it’s working. I don’t know. Or at least it’s erasing it enough that who knows? We’ll see what happens That’s one of those things that say, okay, I’m doing what I can. I’m following my treatment plan, I’m doing what’s on the list, and we’ll see where we end.

Health Hats: Honey, that’s a lot.

Not aloneMighty Casey: It’s true. And that’s in the meme. Speak of our times. Welcome to the third millennium. Yes. It’s a lot. Any of it can be a lot. And yes, I’ve got a lot going on right now. Still, again, it’s not as though I’m in any way trying to minimize or push away the impact or importance of what it is I’m dealing with. Still, the fact that I’m not alone in this, yes, first of all, I’m not alone because I know a lot of people give a shit and are out there pulling for me, which makes a big difference. Trust me, it does. I know it’s there, and it makes a big difference.

From episode #132: Healthcare is Hilarious. Continuing Mets Saga. Hospital. Home.Health Hats: #127 was a matter-of-fact cold sundae with ‘oh, crap’ sauce. Then it melted into the hospital for pain management and electrolyte level-setting. We recorded #132 on July 1st, 2021. Casey rallied with self-reflection and advocacy. Still with that biting humor Casey published #MetsParty goes to the hospital! on July 3rd and I published on July 11th.

Health Hats: So, you’re home. Why’d you go in?

Mighty Casey: I had not grasped this because you onboard a lot of information when you end up in a situation, let’s say some stage four cancer thing, there is lots of information aimed at your head. I do like to think that I retain a lot of it, but it doesn’t all stick. I don’t know that I’ve gotten the memo that somewhere around 25% of the people with my illness end up on the drug that I’m on, which is a Pfizer drug specific to hormone-positive breast cancer, particularly recurrence in the later stage. They start you with a dosage of a hundred milligrams, and it feels like that dosage is too high for me. About 25% of us who end up on this medication end up with some kind of GI gastrointestinal. I was dehydrated. I called 911. I had no one to do that for me. I did it for myself because I knew that I was in trouble. This wasn’t getting any better. It was getting worse. I didn’t realize that it was going to be five days, but in comes the EMS crew, and out the door I go, and then I was there.

Pain managementHealth Hats: When you went to the hospital, was your pain managed at home?

| Figure 4: Photo by Ani Kolleshi on Unsplash |

Mighty Casey: It wasn’t like not managed at all. Okay. But what I was taking, I had been on five milligram Oxy tablets, and then the Palliative Care bunch bumped that up to 10 milligrams every three hours. But in the hospital, the last couple of days I was there, they switched me to a 10 milligram 12-hour extended-release. I can now actually get up and walk with my walker. I could take a couple of steps before, but it was not pretty. I mean, it’s not like I’m doing a Rockette’s kick line. Do not mistake me, but, Getting back in the pool is something that seems possible now. Whereas until a couple of weeks ago, that was not feeling like it was on the list of shit Casey could end up doing.

Health Hats: When I talked to you briefly when you just got home, you were committed to not leaving the house for a few days.

Recognize privilegeMighty Casey: Two weeks actually. I’m just going to be 100% that bitch. I will now take a short break to mention the fact that I recognize my privilege, deeply recognize my privilege as an older person who elected to go with original Medicare. Not that Medicare advantage managed the Healthcare mess. I had a broker work with me to pick the right plan for me, but I’m acknowledging that I didn’t have to pay the broker, the insurer, the people who sell the supplements.

Most elders, who are aging into Medicare, don’t know that this kind of stuff is available to them as services, help, guidance, and consulting, pick one. But because I knew this, so anyway, I have really good

| Figure 5: from The Stanford Framework for Stakeholder Partnership | Everyone Included™ 2017 |

Medicare, we’ll put it that way, and not that it pays for every last little thing, but it does pay for most of it. But again, grateful for the privilege. I’m in the position to be able to pay for that. It’ll probably be 600 to a thousand bucks. For me it’s fine. I can do that, and I am grateful that I’m in the position to be able to do that because that way, when I got home, I didn’t have to navigate the stairs. They brought me into the apartment. They didn’t have to carry me to my bed, but they got me in the door.

Hospitalists and coordination of careHealth Hats: How was it, being on the receiving end of hospitalists?

Mighty Casey: I can’t say that I got hospitalisted to a fare-thee-well by any stretch. There was one hospitalist, a woman who came and was there a few times. She did what she needed to do, and I think she was the one that put me on the extended-release pain meds. So that was thumbs up to the hospital crew. Doing that in concert with my palliative care and my oncology team came to see me in the hospital.

Health Hats: What was your view of the coordination of care then?

Mighty Casey: It was on me, but none of that surprises me. It’s like knowing that the person in the bed or the person in the room with the person in the bed needs to be the care coordinator or participate in care coordination. You just got to know that going in, and it’s not as though there will be no care coordination if you don’t do that. The yawning gaps happen when the people on the receiving end aren’t paying as much attention as the people on the dispensing end.

Health Hats: It always seems to me, as a nurse, that it was so much to ask. You don’t get in the hospital unless you’re pretty messed up. And it’s really hard to focus, right? Because you’re just gazing at your naval because you’re in misery.

Episode #139: Normal, A Dryer Setting with Mighty Casey QuinlanHealth Hats: I’d been feeling poorly, lots of pain affecting my mobility, ability to play my bari sax, and mental health. I was struggling to put out my podcast and Casey reached out to me. Let’s record together again. What a love! We recorded on August 7, 2021. Casey published #MetsParty – Danny & Casey Talking Altered States on August 21st and I published Normal, a Dryer Setting on August 29th. Again, links in the show notes.

Health Hats: I have something I wanted to talk about with you. We have been dealing with the up and down of altering states. What I’m interested in is adjusting to this new reality.

Mighty Casey: New realities and new normal. But normal is a dryer setting.

Steroids, love ‘em, hate ‘emHealth Hats: Yeah, I’ve been thinking a lot myself, is I’m on the downside of steroids. Steroids are the most wonderful drug in the world and one of the worst.

| Figure 6: Photo by Dan Burton on Unsplash |

Mighty Casey: Yeah. I had to say not a fan. The one time that I was. Dexamethasone during this period over this year that you’ve been having my own adventure.

I was like, if you ever try to get me to take that again, I’m going to punch you in the face.

Health Hats: I feel that way until I hit a certain point. It seems like the only thing, but the point is no.

Mighty Casey: I also will say the Dexamethasone didn’t do crap for the problem. It was supposed, so it was like, I felt speedy and agitated, and all the stuff you get with steroids didn’t help. If it helped, I would’ve probably felt less face punchy about it.

Health Hats: Each time I’ve taken steroids, whether for MS flares or this back stuff, it’s like magic in how fast and how well it served its purpose.

Leaping tall buildings

| Figure 7: Leaping in a single bound created by DALL.E |

Mighty Casey: When something works, it doesn’t matter what anybody else thinks. I’m just going to keep doing this planning. It’s all in the planning, but that’s the thing. People who don’t have to concern themselves with any kind of physical incapability, and it’s just, it’s not something that they have to think about. And having been in that crowd for 60-odd years, it’s just, even though I had a lot of empathy and understanding. When I was making plans with disabled friends, I would make sure to think it through, like where am I asking them to go? What am I asking them to do? Also making sure that I hadn’t done something stupid. But at the same time, you don’t realize how much the world is set up for people who can leap tall buildings at single bounds. How much of the world is not set up for anybody who can’t do that?

Engaged with sax – changing capabilities

| Figure 8: Selfie of Danny in his studio 2022 |

Health Hats: Yes. There’s also, for me, a couple of levels. The main one is playing my horn. Yeah. I can play for 10 minutes, and 10 minutes is a tune. 10 minutes is not sufficient, and I’m waiting on an assistive device. Hopefully, that’s going to help me. But it’s interesting thinking about, okay, maybe I should start playing the kazoo.

Which horn is it that I play? A baritone saxophone. It’s a 25-pound horn. That’s a good side story. It’s a big horn. And I love it. I have played clarinet in the past, and I have played alto sax, but I don’t want to. When I’m thinking about it, I think, okay, is this my new reality? And okay, so what does that mean? So, part of it is, as you’re describing, is the logistical, practical, okay, these are the capabilities today. What does that mean in terms of going to the bathroom or getting in the door or out the door. But then I’m also Thinking “oh my God, this is the new me.” Do I like this?

Patient hackers adaptingMighty Casey: Challenge your ability to adapt. I have to go through this like a version or like a small slice of it myself currently with the mobility issues presented by bone mets. That have settled into my hip, pelvis, and lower spine. It’s just, it’s been an interesting journey. Again, the empathy piece. Not as though I was, I considered myself the most empathetic person on the planet, but I realized that even I, who thought I was doing okay, fell short in some things that one assumes about stuff. Yeah. But it’s certainly put on my mind now, and if I don’t think it will happen. But if I fully regain total mobility, I’ll be really grateful for that. But in the meanwhile, in my current situation, whatever I can do, I will try to do, and whatever I can’t do, I will try to figure out a hack. We call ourselves patient hackers, people who confront the medical industrial complex and have needs beyond. People who have healthcare needs beyond Yeah. I don’t need that. I’m okay. You have to figure out how to work this system hacking. You have to figure out how to work the system to get what you need. We’re all hacking this all the time. I think it does a disservice to people who fix problems/issues, and things that aren’t working for them or their communities. We’re all hackers in that sense.

| Figure 9: Photo from TueNight 10: Casey Quinlan – TueNight.com 2021 |

Health Hats: It’s good to talk to you, and I look forward to seeing you.

Mighty Casey: I look forward to seeing you too. like I said, this is pretty much a mortal lock unless they cancel the con, and we’re going to observe proper protocols, but we will still love the hell out of each other however as we do it.

Not quitting till I’m deadIt’s just, the things I’ve learned in the journey and this year has been a never-ending journey. This learning as I am getting ready to depart from my birthday dinner is cancer can’t kill me yet. I have too many problems to hack fix in healthcare. So, f**k cancer, I’m not done, and I’m not quitting until I’m dead.

And then I want you all to carry me off the battlefield on my shield and then keep fighting. Because that’s the only way we’re going to hack this universe into a more human-friendly place.

Episode #181: Might Casey UnpluggedHealth Hats: Let’s just say Casey’s health is not great. You see us two baldies talking to each other after the space of about a year. Casey’s had COVID, chemo, starting with palliative care. We recorded on October 28, 2022. I published an audio and video episode on November 26th. Casey never did publish this episode, although she did publish a #MetsParty update Can we haz moar hope plz? on December 2nd.

Health Hats: Let’s jump right into the chat. Hello, my love.

Mighty Casey: Hello, dear. How are you? What’s going on?

Health Hats: What’s new? I’m working on a series about young adults with mental illness. It’s been fascinating pulling it together, meeting people, thinking about its scope, and finding people with lived experience to share their stories. So, it’s rooted in reality.

Mighty Casey: Yeah, exactly.

Health update – not greatHealth Hats: Tell us about your health.

Mighty Casey: Just say it’s not great. I went through, let’s see, at the beginning of this year, things looked okay, other than I did get a mild case of omicron, a breakthrough. I guess it was like the first week of January. But everything seemed to be just bumping along. But then, in April and May, my kidney function started to look funky, right? Technical term.

In June, I was in the way of needing to see a nephrologist, and there was some deep concern about kidney failure. And the last thing I want to deal with right now is dialysis. So, I was working on, okay, how do we get past this? And they also, at the same time, were strongly suspecting that it was because of the treatment I was on. Okay. The oral medication I was on for my cancer was part of the problem because there were a lot of other issues around anemia and calcium levels, and things just kept going further and further down into the, which led to me being hospitalized. Twice, once in August and once in September, they took me off the medication.

| Figure 10: Photo by Danny from Zoom recording 2022 |

I was on breast cancer medication. I stopped taking that. I want to say it was in June, but it took a while. My kidneys are okay, not great, but they’re no longer in kidney failure. Occasionally they have to hit me with a drug called Zometa. That is, what that does is it reduces blood calcium levels, and they haven’t had to hit me with that for, I guess, like a month or so now. So that’s good. I’m on. I use traditional chemo now versus the oral medication I had been on. I’m on a class of drugs called Taxanes.

Crying over spilled hair?As we’re sitting here looking at each other, people will be listening to this, but yes, all my hair fell out, but that’s fine. I’m not going to cry over spilled hair. Why? Why worry about it? Other things are more important, like getting this cancer under control.

I had a CT scan yesterday. A progression scan and things are at a stasis point. A spot on my liver has been there for a little while. I did end up with a broken rib. I was pretty sure it was a broken rib and that was a pathologic fracture the way that the cancer is in my bones and my spine.

I had broken ribs, visible, healed, and broken ribs, visible on an MRI last year when I felt like I had a broken rib. I was pretty sure it was a broken rib, and it was. The pain has passed off now, blessedly, because that was pretty awful. But the pain itself only lasted for, I guess, about a week or so, maybe ten days.

It wasn’t that bad, but they’re talking about maybe doing another round of radiation in that area just to, we’ll see. But I’m chemo-brained badly at this point. I can still work on audio and video editing and my projects. I do stuff for medical journals and societies through a major publishing house.

But other, I can’t write. I can’t write to explain right now. I had to turn down a writing project that was worth a few thousand dollars this month just because I couldn’t. I’m just not in the zone where I can write like that right now. And they’re infusing me every three weeks. I go in for another infusion next Thursday, and the cadence seems that the first week to 10 days is the worst of the chemo brain. Wow. I think now we’ll see. It’s the one question I keep forgetting to ask, and I will remember to ask next week when my appointment with my oncologist. How many of these do you see us doing? And because every three weeks for 12 to 18 weeks, that’s six months or close to it. So that takes me well into next year.

And now I’m concentrating on the small stuff. I still want to get back in the pool.

| Figure 11: Hang a hat on spiritual health by DALL.E |

Health Hats: So, how’s your spiritual health?

Mighty Casey: Spiritually, I am seeing or talking to palliative care. And I’m okay. I can’t say that I don’t. There are good days and bad days. I’m okay. I don’t know where we’re headed with this short-term or long-term. But I’m just waiting for a signal, and there may not be. Who knows? Who knows. But, again, the progression scan thing didn’t give us anything to hang our hat on yet. Yes, they confirmed that I did have a broken rib. There’s a little bit of ground glass in my lungs. They think maybe that’s a leftover from the covid thing, although my covid infection was minimal.

But I’m just, every day I wake up, and it’s a day, and I live through it, and then we do it again the next day. Yeah. And as long as that keeps happening, I’ll keep pressing forward.

Health Hats: When you reflect on your career as an activist, how do you recognize success in your work?

Mighty Casey: What we’re all trying to do, is such a huge heavy lift and giant pivot, a long-established hierarchical setup, process, industry, whatever you want to call healthcare. I don’t know. Every once in a while, here’s something that gives me a sense that some potential change has happened. But pretty much everything will be recognizable more in a look back than it will be anything you can see happening

| Figure 12: Death by a thousand pilots as tapestry by DALL.E |

like in real time around you. And I think my measure of success. I don’t know that I have one. Okay. I just get up every day and go and do what I do. If I hear somebody saying something that I know I’ve been saying for a decade, but I never heard them or that group say it before. Yeah, that’s progress. That’s progress. And that’s progress. We managed to create a little bit of something there. We’ll see. But then that’s the, we’ll do a test, or we’ll do a pilot. The thing that I see too many sorts of industrial side players getting trapped in, though, is that death by a thousand pilots. They do a thousand pilots. And, but they never actually do an entire system through their entire system. They don’t flush through the whole thing and change their processes enough to make it truly patient-centered. Yeah. Patient-focused. Even patient-led, in some cases, they could do with some patient leader. And that’s why organizations like PCORI, the Patient-Centered Outcomes Research Institute, and other international groups are one of the reasons they came into existence, to at least try to push some of that through.

| Figure 13: Photo by Ricardo Gomez Angel on Unsplash |

But again, we’re dealing with this vast hierarchical structure that’s been built over millennia. Not very scientifically based, let’s say 2000 years ago. We’ve gotten a little better in the last few hundred years, but we’re still tripping over ourselves as a species. Discovering things and figuring out maybe that idea about the leeches was not a good idea. There’s still some leech stuff that’s left lying around. Why do we keep doing something if it’s meaningless? Or if it’s just because it’s the way we’ve always done things, that’s why we’re doing it this way, looking at processes and systems and saying, why do we do it this way? Is there perhaps another approach we can take that would be either safer, faster or more effective? Pick your descriptor, but which is trying to think of new pathways and new ideas that go beyond just a scientific experiment. And the other battle that drives me crazy is this whole qual versus quant. Or qualitative versus quantitative. Everybody wants their numbers, and they want their little data sets, and they want it scientifically. We titrated this, and it was a chemical formula. Then we did a, we did algorithms, and it was all about the data and the numbers and the statistics, and that’s when it’s quantitative, then we know it’s real. Still, it’s qualitative, soft skills, and people talking to each other, and we don’t see any science in that. What the hell? So, wait a minute. No, that’s not right. But we’re still in that zone.

Health Hats: If you think about our mutual audiences, what advice do you have for us in these trying times? Do you think that, oh, this works? I found this over and over. This works. I know one of the things you’ll say is to build relationships across bridges is something you’ve said since the moment I met you.

Mighty Casey: You must bust the silos. You have to break down those communication channel silos as much as you need to break down the silos between data exchange, et cetera.

Health Hats: Yeah. What else?

| Figure 14: photo from The Scoop with Casey Quinlan – YouTube 2016 |

Mighty Casey: I don’t know. We’ve got globally and then. Our own in the US of A thing. There’s a colossal species-wide challenge. We’ve got so many things confronting us right now. Everything from the fact that we’ve managed to screw the climate almost beyond recognition, and also the rights of individuals as citizens seem to have become less important than the rights of some rich people who get to buy governments and put their little puppets in there basically and have it all be the entire system of everything set up to reward them. This small percentage of humanity and the rest of us can all just go between the United States and the rest of the developed world. The world observes democracy as an actual process. Although that’s an open question right now, given the way that democracies, in many ways, are behaving. You just look at the UK and the US; we’re such a hot mess between us. It’s hard to wrap your head around how bad things are.

If you sit and think about the macro picture too much, though, you can end up stuck because there’s just Yes. So much that’s wrong that we thought we were making progress, but this feels, instead of the two steps up and one step back, it’s like we took two steps up, and now we’re rolling back three centuries. Wait a minute, are we going back to the feudal state now, and are we all going to just basically be sitting at the foot of the castle walls waiting for the nobles to throw some scraps out so that we can eat this week or paper towels and let’s where we’re at.

Health Hats: Thank you. This is lovely. Thanks for doing this with me.

ReflectionBald is beautiful and shows on the outside. Brain fog on the inside freaks me out. Last time I spoke with Casey in mid-March she didn’t sounds lucid or humorous and she couldn’t spin a yarn or offer wisdom. Casey impacts me/us in the patient caregiver movement. I’m grateful. I’ll pray for Casey and her sister, CeCe. Jan Oldenburg and I commit to saving an archive of Casey’s work. We’ll be calling on you.

The post The Mighty Mouth Goes Quiet, Casey Quinlan, Mashup 2021-22 first appeared on Danny van Leeuwen Health Hats.

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Thoughtfulness, frustration, and caring of PCP, Dr. Bonnie Engelbart managing referral, consultation, and stretching resources but still, not enough bodies.

Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post.

Subscribe to Health Hats, the Podcast, on your favorite podcast player

Contents with Time-Stamped Headingsto listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)

Proem.. 1

Podcast intro 01:26. 2

Health is fragile 02:00. 2

Primary care practice at Cambridge Health Alliance 05:31. 3

Screening for mental illness 06:29. 3

The referral maze 08:10. 3

Team building 11:40. 4

Toll on staff 14:02. 4

The burden of stigma, lack of resources, barriers to continuity 14:41. 5

Need more bodies 17:00. 5

Care partners 18:31. 5

A word from our sponsor, Abridge 19:27. 6

Complex time 20:09. 6

Changes over the past twenty years 21:27. 6

Self-medication 22:56. 7

Questions for emerging adults 24:03. 7

Questions for administrators 25:27. 7

The burden of cost to families 27:19. 7

Culture and language 28:09. 8

Reflection 30:35. 8

Next #7 Emergency medicine: We’re not trained for this 32:25. 9

Podcast Outro 33:02. 9

Please comment and ask questions

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, Twitter, Mastadon to @healthhats

CreditsMusic on intro and outro by permission from Joey van Leeuwen, Drummer, Composer, Arranger including Moe’s Blues for Proem and Reflection

Web and Social Media Coach, Dissemination Kayla Nelson @lifeoflesion

Intro photo of Vulture Couple by Rich Rieger used with permission

Photo of Swaziland by Ndumiso Silindza on Unsplash

Images of emerging adult with mental illness and community collaboration from DALL.E

Sponsored by AbridgeInspired by and grateful to Laura Zucker, Mike Herndon, Sue Donnelley, Luc Pelletier

LinksWorld Health Organization (WHO) Adolescent Mental Health

Most mental health concerns, especially for emerging adults, first present in primary care, placing them in a critical role for addressing these concerns.

The PSC-17 Pediatric System Checklist is a brief questionnaire that helps identify and assess changes in emotional and behavioral problems in children

When kids turn 18, we transition to a form called the AWQ, Cambridge Health Alliance Adult Wellbeing Scale, which screens for depression, anxiety, and substance use.

National Alliance of Mental Health: Kids, Teens, and Young Adults,

White House Fact Sheet: Improving Access and Care for Youth Mental Health and Substance Abuse Conditions,

American Academy of Family Practice (AAFP) article, Managing Behavioral Health Issues in Primary Care: Six Five-Minute Tools.

Related podcastsSeries: Emerging Adults with Mental Illness

Pediatric Transition to Adult Care | Danny van Leeuwen Health Hats (health-hats.com)

To subscribe, go to https://health-hats.com/

The ShowProemAccording to the World Health Organization (WHO)

Globally, one in seven 10-19-year-olds experiences a mental disorder, accounting for 13% of the global burden of disease in this age group.
Depression, anxiety, and behavioral disorders are among the leading causes of illness and disability among adolescents.
Suicide is the fourth leading cause of death among 15–29-year-olds.
The consequences of failing to address adolescent mental health conditions extend to adulthood, impairing both physical and mental health and limiting opportunities to lead fulfilling lives as adults.

Most mental health concerns, especially for emerging adults, first present in primary care, placing them in a critical role for addressing these concerns.

I’m delighted to speak with Dr. Bonnie Engelbart, primary care physician, in this sixth episode in my series on Emerging Adults with Mental Illness.

Health is fragile.Health Hats: Bonnie. So good to see you. Thanks for joining me. I love that we can do this. So that everybody knows, we’re friends, and I’m taking advantage of our friendship to mine your experience and skills. For a long time, I’ve been interested in young adults and healthcare for young adults. I did a series about young adults transitioning from pediatric medical care to adult medical care a few years ago. And that was fascinating. It’s so different. And when I worked at Boston Children’s, the adolescent community was very outspoken, and I learned a lot just by sitting back and listening to them. So anyway, why don’t we start when you first realized that health was fragile?

Bonnie Engelbart: The first time it was apparent to me was during my last year of medical school. I spent two months in Swaziland, a small country in the middle of South Africa—an impoverished country with minimal healthcare resources. I went there with a few other medical students, some residents, and a physician supervising us. But as medical students, we were thrown in and put in charge of things that it would never be given to medical students in the United States. I oversaw the men’s medical ward in the hospital for the two months that I was there. And the medical conditions we were seeing were things you wouldn’t see in the United States, like an enormous number of people with Malaria. They were estimated possibly as high as 20-25% of the population was HIV positive then. We were seeing people with end-stage HIV in the hospital.

Health Hats: You were in charge?

Bonnie Engelbart: I was in charge. We cared for many people with injuries from car accidents and unsafe working conditions. These things wouldn’t happen as frequently in the United States because we had better preventative care for infectious diseases. We had more rules around driver’s licenses and traffic control, and we had OSHA to regulate working conditions. So, I think that was the first time I was aware of the fragility of life.

Primary care practice at Cambridge Health AllianceHealth Hats: Please tell us briefly about your practice.

Bonnie Engelbart: I work for Cambridge Health Alliance, an organization with two hospitals in the Boston area and several primary care clinics based in the community. I am the medical director for one of those primary care centers in Everett, a city of about 50,000 people just outside Boston. It’s essentially an immigrant community. And I’m a family doctor, so I see people from birth through death. I do the full spectrum of ages.

Screening for mental illnessHealth Hats: When you think about the young adults in your practice, what do you see that you’re thinking, oh goodness, there might be mental illness here?

Bonnie Engelbart: Unlike a pediatrician, I see patients as they progress from being children to adults. They don’t leave my care. Nor do they initiate my care during that transition from childhood to adulthood. They can stay with me. I see them as they go through that transition. And for all ages, we’re doing mental health developmental and screeners. It’s once a year. It’s not at every visit. But we have a standard screening form for teenagers called the PSC, which includes questions about depression, anxiety, attention problems substance use.

The PSC-17 Pediatric System Checklist is a brief questionnaire that helps identify and assess changes in emotional and behavioral problems in children.

Bonnie Engelbart: When kids turn 18, we transition to a form called the AWQ, Cambridge Health Alliance Adult Wellbeing Scale, which screens for depression, anxiety, and substance use.

The referral mazeHealth Hats: So, you’re dealing with mental health, emotional health, and physical health. In our system of fragmentation as a family doc, you’re dealing with all of it. But then you end up referring people out when you start feeling like this is a little more than you can handle. When that ends up being mental anxiety, depression, harm, whatever. How do you decide it’s time? Is it more than I can do?

Bonnie Engelbart: As a family doctor, much of our care is around mental health and depression, and anxiety. Those are conditions that I would be managing, and I wouldn’t refer out. Certainly not as an initial step. I think the times when I would refer out would be if I’ve prescribed a medicine and I’ve been adjusting medications and trying different things, and the things I’m trying are not working. Obviously, if someone is suicidal, I will send them to the hospital. For people with severe depressive symptoms, I often will try to refer them, but the reality is that there aren’t adequate resources. And so even with people with a significant illness, I often carry that care for months before they can access mental healthcare. For things that are a little more complex, bipolar or schizophrenia, schizo-effective, or something like that, we do have eConsults, so I can take a history, do my best to ask all the appropriate questions, and then share that chart with a psychiatrist electronically. They’ll review the history I’ve collected, and within a week, they’ll get back to me with medication recommendations.

Health Hats: Is that within Cambridge Health? That’s a nice feature.

Bonnie Engelbart: It’s a very nice feature. It doesn’t give me help in the moment. There’s no way for me to page a psychiatrist or get help right then when I see the patient. So, there is always this delay. Which generally is okay. But some patients really are in quite a lot of distress. They’re not suicidal, so sending them to the hospital is inappropriate. But you also would like to do something that day and can’t.

Team buildingHealth Hats: If access to resources is limited, and then it seems like you have to pull in, then any resources you can, and you’re blessed to have this e-consult resource. But then there are resources of the family, the school, the peers your staff. How do you try to assemble a team, so it’s somewhat adequate?

Bonnie Engelbart: I think that pulling together a team is tricky. Technically, the care they’re getting is confidential for someone who has turned 18. And unless they give me permission to involve the parents, I’m not allowed to. And for some young adults who want their parents involved and then I would call them or ask them to come to a visit. But for some of these patients, I would say most don’t want their parents involved, right? And so that part of the team is not there. In terms of involving teachers, it’s rarely the case. There may be communication with a guidance counselor at school. But even that can be very tricky. Consent must be in writing. We must fax the consent to the school. Faxing is unreliable. And then, you just have to make time to reach out to the school and hope that the person you’re contacting is available. There ends up being a lot of phone chases and missed connections with the schools.

Toll on staffHealth Hats: It must take a toll on you, your colleagues, and your staff that resources are so limited.

Bonnie Engelbart: It does. It definitely does. It feels very heavy. It feels like you’re not doing enough. Yeah. It’s a tough spot to be in.

The burden of stigma, lack of resources, barriers to continuityHealth Hats: If somebody has diabetes or they have a more acceptable issue. I don’t know how to talk about this stuff. We’re not a society that embraces mental illness. Because our resources are so limited, there’s stigma attached to it. It would seem then that you’re dealing with you don’t have the resources, or sometimes you do. Still, the continuity of care across those resources, being the family practitioner, is there a particular challenge even when you successfully find resources to maintain continuity of care with young adults with mental illness?

Bonnie Engelbart: I think there can be. I mean, if someone has a complex mental illness and they’re fortunate enough to be well connected with a therapist and a psychiatrist, I’m not keeping up with the minute-to-minute details of what’s going on with their mental health. The therapy notes are often kept private, even if that care is within my organization. I can’t read them. Psychiatry notes I could read, but they’re not automatically sent to me. And I will only become aware of the latest details if the psychiatrist reaches out to me or the patient reaches out to me, and that causes me to look at their chart. And then, of course, if their mental health care is outside of our organization that’s even less private practice or in a community mental health center, I wouldn’t have any information from them.

Need more bodiesHealth Hats: What would you want to see if you could wave your magic wand? Or what would you want to have, or what could help this?

Bonnie Engelbart: Really, we need more bodies. We need more therapists. We need more psychiatrists. We need more case managers who could help with referrals or be the go-between between the primary care doctor and the mental health providers. The go-between, between the primary care doctors in the schools or whatever other agencies are involved. I think that would be tremendously helpful.

Health Hats: Does your organization like have unfilled positions or support positions? Yes.

Bonnie Engelbart: Okay. Yeah. Many positions for therapists and psychiatrists are unfilled. Also, unfilled positions called care partners.

Care partnersHealth Hats: Like peer support?

Bonnie Engelbart: Kind of peer support. They can do some coaching around, like self-care or some relaxation exercises. Sleep hygiene. Sometimes they can have some behavioral activation encouraging patients to exercise or spend time with friends or self-care that helps with mood. Currently, we have a mental healthcare partner for adults. But the child role has been unfilled for several months. We just found out that someone was hired for that role. It’ll be a while before that person starts, is trained, and is fully up and running.

Complex timeHealth Hats: Wow. What should we be talking about in this area that we haven’t? What do you think people should know from the primary care point of view about young adult mental health and mental illness?

Bonnie Engelbart: It is a complex time.

Health Hats: Being a young adult?

Bonnie Engelbart: Being a young adult. Oh yeah, and right. Technically they’re adults when they’re 18, but that doesn’t mean they know how to navigate the healthcare system. There’s a lot of growing up that still has to happen. And they’re suddenly on their own in managing this complex condition and trying to access resources. Or healthcare providers if it’s a problem. It’s a very vulnerable time. Yeah. And so I think that’s the area that feels the most problematic or particular for this group of patients.

Changes over the past twenty yearsHealth Hats: How long have you been practicing?

Bonnie Engelbart: I finished residency 20 years ago.

Health Hats: Okay. So how do you think what you’re seeing with young adults? Is changing over those 20 years.

Bonnie Engelbart: That’s a tough question. And I think it comes up far more often, not just because we’re screening more, and I believe there is less stigma around. Okay. It’s almost more normalized. And so great that they’re bringing it up and asking for help, but there isn’t enough help. Yeah. And it falls on the primary care doctor because there aren’t enough mental health resources.

Health Hats: It feels helpless.

Bonnie Engelbart: Yeah. I’ve learned much about medication management in the past 20 years, but I am not a therapist. I’ll never be a therapist. I’ll never be a substitute for a therapist. That’s a crucial part of treatment for people. And it’s very hard to access. There just are not enough therapists.

Self-medicationHealth Hats: Do you think that young adults who suffer and not getting treatment go the self-medication route more often, and then you have to deal with that? That there are substance issues on top of it.

Bonnie Engelbart: Yeah, I think it’s true. It’s true for all ages. Yeah. That people self-medicate. But it makes sense that a teen or someone in their early twenties would think less about the consequences of alcohol or daily marijuana use. Or they might dabble in opiates and quickly discover that they’re addicted. So yeah, I think it is a coping mechanism for people not accessing mental healthcare.

Questions for emerging adultsHealth Hats: I’m almost done, but I’m working on a series about young adults and mental illness. And I am recruiting some people who have recently been young adults and talking to them about their experiences. Yeah. I want to ground this in lived experience. What do you think I should ask that would help you?

Bonnie Engelbart: I’d be curious to hear how comfortable it is for them to share these concerns with their primary care doctor. I’d be curious to hear if they did bring up concerns with their primary care doctor and how well it was handled. But they didn’t ask the right questions. And so, they didn’t know. I’d be curious to know if many young adults wish their primary care doctor had asked them more or discovered this about them?

Questions for administratorsHealth Hats: I’m scheduling with some people who administer young adult mental health programs. So that’s the providers that there aren’t enough of. Yeah. What should I ask them?

Bonnie Engelbart. I know many agencies are trying to hire and can’t fill positions. But I do think about the model of mental healthcare and that there are inefficiencies in it. I think many traditional psychiatrists will see a patient every month. And that’s a visit that probably goes to a new patient. And maybe that’s that, probably not necessary for someone who’s pretty stable. I’d be curious to hear if the agencies are looking for ways to care for more patients. Are they trying to innovate? Expand what they can do or the number of people they can reach.

The burden of cost to familiesHealth Hats: That’s an interesting one. Doing it differently. Let’s just accept that we don’t have enough bodies. And so more bodies, in a way, is a policy thing. You know how to get people in school. How to pay for school. How to pay people more. Yes. So that they want to do the work.

Bonnie Engelbart: Not just do that work in private practice, but do it for Cambridge Health Alliance or the community mental health center. Yeah. I’m taking care of people who maybe have private insurance. The thing with private insurance is it frequently doesn’t cover the full cost of mental health visits. It’ll cover a percentage. Yeah. Or a specific limit, and then you’re as the patient, you’re left to cover the rest of the cost, and if you’re living paycheck to paycheck, you can’t do that. I’ve had some teens and college student-age kids who are still on their parent’s insurance and haven’t been able to seek the mental health care they need because of copays and deductibles and their parents’ plan. It was too expensive. And to see a therapist every week or two, they just, their families can’t afford that.

Culture and languageBonnie Engelbart: 65% of the patients in my office don’t speak English as a first language. Oh, my goodness. They would greatly prefer to have a therapist they can talk to directly for standard medical visits; they often will use interpreters and can do that for therapy. But I think it disrupts the process. It’s a very intimate conversation to have had a go-between. I feel can be disruptive.

Health Hats: It’s like a whole other permutation of trust. Suppose there’s this third person in the room who’s translating. Oh, my goodness.

Bonnie Engelbart: So that’s a significant problem in, in terms of patients accessing care. And then culturally, depending on which country patients are from, how they were raised, and their beliefs around mental health, some teens and young adults might have parents who don’t believe in mental health care, or they don’t believe that mental health problems exist. And so, their parents won’t allow them to engage in that care. And the minute they turn 18, they will engage in that care. Because now they’re in charge. Yeah, that’s a whole other issue that I see.

Health Hats: Bonnie, thank you so much. You’re welcome.

ReflectionIn this sobering conversation, Dr. Bonnie describes the systems of referral, consultation, and stretching resources created by Cambridge Health Alliance in the face of scarcity of resources. As she says, there are not enough bodies. We see thoughtfulness, frustration, and caring as we peel back and explore layers. I’m taken by the diversity of culture, language, and geography affecting CHA’s solutions. Does each health system across the country strive to create hyper-local band-aid solutions? Could a national policy approach exist to serve emerging adults and their primary care docs for the entire country, or can we nationally support hyper-local strategies? What a messy stew! Want to know more? I suggest the National Alliance of Mental Health: Kids, Teens, and Young Adults, the White House Fact Sheet: Improving Access and Care for Youth Mental Health and Substance Abuse Conditions, and the American Academy of Family Practice (AAFP) article, Managing Behavioral Health Issues in Primary Care: Six Five-Minute Tools. Links in the show notes.

Next, you’ll read/hear/watch a 30-second clip from our next and seventh episode in the series, Emergency Medicine: We’re Not Trained for This.

Next #7 Emergency medicine: We’re not trained for this.Joel Hudgins: I think we struggle when you turn the ER into more of an inpatient facility and keep behavioral or mental health patients in crisis in the emergency room for weeks. We’re just not great at that, and we’re getting better. But the reality is we’re not docs that train for that. The nurses in the ER did not come with the idea that we’re going to round on behavioral health patients every day. We’re going to do therapy. We’re going to titrate medications. All this stuff is a little bit, not over our heads, but I think it is new to us.

Podcast OutroI host, write, edit, engineer, and produce Health Hats, the Podcast. Kayla Nelson provides website and social media consultation and manages dissemination. Joey van Leeuwen supplies musical support, especially for the podcast intro and outro. I play bari sax on some episodes alone or with the Lechuga Fresca Latin Band. I’m grateful to you, who have the most critical roles as listeners, readers, and watchers. See the show notes, previous podcasts, and other resources through my website, www.health-hats.com, and YouTube channel. Please subscribe and contribute. If you like it, share it. See you around the block.

The post Primary Care: #6 Emerging Adults with Mental Illness first appeared on Danny van Leeuwen Health Hats.

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Costa Rica welcomes travelers with disabilities. Juve Acuna, travel guide, spent a week with us sharing his expertise in flora, fauna, history, & disabilities.

Blog subscribers: Listen to the podcast here. Scroll down through the show notes to read the post.

Subscribe to Health Hats, the Podcast, on your favorite podcast player

This episode is best watched on YouTube

| Please support my blog and podcast. CONTRIBUTE HERE |

Episode NotesPrefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here

Contents with Time-Stamped Headingsto listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)

Proem.. 1

Podcast intro 03:58. 2

Grandfather of disability travel 04:33. 2

Capabilities and preferences 07:07. 3

Building a network 08:30. 3

Preparation 10:51. 4

National Tourism Board 12:48. 4

Building infrastructure for accessibility 13:44. 5

The network for accessibility 16:39. 5

Pride 17:30. 5

Possibilities, safety 19:42. 6

A word from our sponsor, Abridge 21:14. 6

Photo highlights of the trip 21:57. 7

Swimming in the Pacific Ocean 22:16. 7

Howler and white-faced monkeys 23:17. 8

Reflection 24:02. 8

Podcast Outro 24:53 8

Please comment and ask questions

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, Twitter, Mastadon to @healthhats

CreditsMusic on intro and outro by permission from Joey van Leeuwen, Drummer, Composer, Arranger

Web and Social Media Coach, Dissemination Kayla Nelson @lifeoflesion

Intro photo of Vulture Couple by Rich Rieger used with permission

Photo by Iswanto Arif on UnsplashPhotos taken by Ann Boland, Paul Boland, Juve Acuna, and Danny van Leeuwen

The views and opinions presented in this podcast and publication are solely my responsibility and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Danny van Leeuwen (Health Hats)

Sponsored by AbridgeInspired by and grateful to Ann Boland, Linda and Mike DeRosa, Kate Higgins, Mary Lawler

LinksIl Viaggio Travel Costa Rica – Plan your trip to Costa Rica with us (ilviaggiocr.com)

Where to Go Bird-Watching in Costa Rica – Tripadvisor

Arenal Hanging Bridges | Experiencing Costa Rica From The Treetops (parenthoodandpassports.com)

Related podcastsCamino | Danny van Leeuwen Health Hats (health-hats.com)

To subscribe go to https://health-hats.com/

The ShowTo see the transcript with images download the printable transcript here

Proem

| Figure 1: Skywalk hanging bridge in Arenal National Park, Costa Rica |

| Figure 2: Danny in his chair with our guide, Juve |

Just stay in the middle. Stay in the middle? The suspension bridge was six inches wider on each side than my electric wheelchair. I’m good with my joystick, but am I that good? Gulp, I can’t see the bridge’s other end, but Juve knows what he’s talking about. Juve Acuna Sanchez is the grandfather of disabled travel in Costa Rica. He takes people with spinal cord injuries, limited vision, cognitive challenges, and me on guided tours. He says I can do it. I’m approaching the longest suspension bridge in Costa Rica, 984 feet (a tenth of a mile), stretching 230 feet over the stunning tropical forest canopy. That’s about 30 stories high. OK, I can do this. One hundred feet, so far, so good. Then the bridge starts swaying. By midway, it’s swinging about a foot and a half from side to side. OMG, I’m afraid of heights. There are people in front of me and people behind me. We stop and let the people in front of us finish, so the bridge sways less. But people keep coming behind and wait impatiently. I remember to start recording using my phone on a selfie stick attached to my left armrest. The sides of the suspension don’t attach to the bridge, only the cables holding it up. My small eight-inch front wheels slide off the edge. I’m stuck. My large, powered back wheels pull me off the edge. I’m terrified. I can’t go back. I have to go forward. A few never-ending minutes later, I make it to solid ground. If you’re reading this or listening, check out the five-minute video on YouTube https://youtu.be/Ydjy0ffHPuY.

Traveling with disabilities is equal parts invigorating, self-satisfying, wonderous, and scary. Great for my spiritual health, especially when I reach the other end of bridges and don’t fall backward or tip over the edge. I live to tell a great story.

| Figure 3: Juve Acuna |

Juve Acuna with Il Viaggio Travel, our full-time guide, appears to be a grandfather of disability travel in Costa Rica. He picked us up at the airport, stayed with us, drove us, and shared his extensive knowledge of Costa Rican flora, fauna, and history for a week. Let me share some of our experiences, images, videos, and an interview with Juve. Travel is good for my spiritual health. I can do it. I can successfully solve moment-to-moment problems and receive and accept loving assistance. This episode may be best as a video. Check it out on my YouTube channel @dvanleeu. Next, we will hear from Juve describing his journey as a guide for people with disabilities, and I’ll highlight of few of the wonders of our travel.

Grandfather of disability travelHealth Hats: Juve, hello. Thank you so much for joining us today. How are you?

Juve Acuna: Thanks to you for this opportunity.

Health Hats: We met because I’m in your country, Costa Rica. You greeted us at the airport, and we had a wonderful time. And I’m a person with disabilities, and I came to a travel agent who said they specialize in tours for people with disabilities. How did you end up in the line of travel for people with disabilities?

Juve Acuna: About ten years ago, I started working with this company Il Viaggio Travel. A friend of mine since a long time ago, and I realized that the country needs to be more accessible. The uncle of the company’s owners lives in Spain, and his wife, with disabilities in a wheelchair. They used to bring it here and take it all over. It wasn’t that accessible. We started together as the, all these the National Network of Accessibility and yes seven years ago, we started already like as a for tourists and brought people the idea is that they can do the same that everybody does us, right? For example, doing a zip-line tour. We take them rafting. We have unique chairs to take them off the road on the trails, which has been working well.

Health Hats: It’s, so when you say disabilities, is it? All kinds of disabilities. People who are blind or have deafness. Or intellectual challenges or mobility.

Juve Acuna: All kinds.

Capabilities and preferencesHealth Hats: When somebody contacts you and asks you to help plan their trip, how do you assess the person coming to try to make sure you understand their capabilities? Yeah, because everybody’s disabilities are a big word. There are so many nuances to it.

Juve Acuna: Part of the contract they do is from the office when they already have people coming. Usually, they need to fill out a form, okay? And in the form is all the details, and they must explain what kind of disability they have. So, the company looks for a specialized guide.

Health Hats: When we made those two Camino trips, I told you about, I made a short video of my capabilities, so my wheelchair and folding it up and putting it in the car and that I could do some steps. It just makes it so much easier for somebody to see that.

Building a networkHealth Hats: One of the things you told me that I found so interesting is that you’ve developed a network of people you can call on depending on how many people are in the party. I was going to say how much risky behavior they want. I didn’t mean that. Do you know what I mean? That swinging suspension bridge and swimming in the Pacific worried me. But you’re saying that people will just do all sorts of stuff. So how did you build this network of people you can call on that you can trust to work with you because you’re one person?

Juve Acuna: It was hard at the beginning. We, as a company, trained the people, tour operators. And we went to the hotels and measured all the doors, bathrooms, and everything so they could be approved to work with us.

Health Hats: Okay, it isn’t just other guides or muscles. It’s the environment and everything.

Juve Acuna: Okay. Everybody must take some courses to manage different people with different disabilities.

Health Hats: Tell me again the name of where we are. What’s the name of this resort?

Juve Acuna: Costa Verde.

Health Hats: One person here seems to be on top of it. Everybody’s nice. But that one fellow knew, the driver of the van, he anticipated everything. That was good.

PreparationHealth Hats: When we went on the pilgrimage to Spain and Portugal, I trained for that. Now that you’ve had these years of experience, how would you suggest that people who want to travel and who have disabilities how should they be thinking and preparing so that they’re ready? Regarding different surfaces and vehicles: the train, the bus, cobblestones, rain.

Juve Acuna: Sometimes it is hard. People get freaked when they’re doing rafting or zip-lining tours and things like that. We have different packages to sell to different people with disabilities. We always offer various activities while they stay here. So, they choose that. So, it is not a surprise. It’s something that they manage ahead of time. I’ve been bringing people with disability to do any kind of activities even when they cannot move anything.

Health Hats: Somebody quadriplegic?

Juve Acuna: Yes. And they have been doing different activities, and they really enjoyed it. Oh yes. They enjoyed it.

National Tourism BoardJuve Acuna: All the tour operators already know. They already have courses. They already know how to manage different disabilities when they’re blind or cannot walk. Or when they can move a little. The Tourism Board Institution approves all these courses in Costa Rica.

Health Hats: Oh, really? Oh, so it’s national?

Juve Acuna: It’s a national network.

Health Hats: Was it national when you started, or did it become national?

Juve Acuna: No. We started a national network. But it was tough. But in the end, we just spoke with the Tourism Board of Costa Rica, and they put us into the government. So, the government approved our project, and that speeded things up.

Building infrastructure for accessibilityHealth Hats: Wow. That’s great. You told me that you were taking bottle caps and creating equipment. Can you tell us about that?

Juve Acuna: We initiated this donation program from different institutions from the government, private companies, hotels, and industries. They’re donating the tops of the plastic bottles. We collect plastic numbers two, number four, and number five. With this material, we make artificial wood. With that, we do we start doing los pasadizos passageways. So, we make accessible beaches.

Health Hats: Oh, so the boardwalk? Yes, in Portugal, they had that.

Juve Acuna: Before that we didn’t have any accessible beaches. We made houses for the lifeguards and amphibious chairs so they can go straight from the beach into the water and stay in the amphibious chair. Right now, we have twelve accessible beaches here in Costa Rica.

Health Hats: My goodness.

Juve Acuna: And the people enjoy it. When I go to the beach now, there are a few wheelchairs. Now everybody uses local Costa Rican people.

Health Hats: I like that you’re thinking about the infrastructure. I’m impressed that the government has gotten behind it because so much of business in Costa Rica is tourism. I remember a guy I knew years ago, a car salesman. He was in getting into the business and having difficulty breaking in. So, he ended up specializing in transportation for people with disabilities. Most people selling cars or trucks or whatever had no idea about disabilities. And so, he would get all this business from everywhere because they knew this guy. He started an industry and trained other people in other parts of the country. He started with nothing, but eventually, in 10 years, he was very successful. He made a good living.

The network for accessibilityJuve Acuna: The network is how you said when we don’t get any money from there. It’s not-for-profit. But the network is separated, the tourist pays, and the agency gets their commission. But it works. In seven years, the country is the most accessible in central America already. It’s incredible to see how everything is being adapted.

PrideHealth Hats: You must be proud.

Juve Acuna: Yes, I’m proud. I learn a lot from these people. Sometimes people complain a lot about their life, and I took an excellent example from them. They always go forward, and it doesn’t matter if they have a disability. They want to do it, and they want to enjoy it. That is a big lesson for me.

Health Hats: Yes, it’s inspiring. I call myself a patient-caregiver activist. Indeed, with my experience as a patient and a caregiver, I get so much inspiration from others. How they’ve managed, and their bravery. There are times I feel sorry for myself. Then I think, oh, here I am. I went on a suspension bridge in Costa Rica too. I’m proud.

Juve Acuna: You can do zip-line tours. You can go rafting.

Health Hats: Zip-line. I’ll text you, and we’ll set it up—next time. Somebody like me could do a zip-line?

Juve Acuna: Oh yes. People that cannot walk at all. They’ve done it, and they cry. I have people we take in the middle of the forest, and this lady was crying a lot because she never imagined being inside the jungle like that. Enjoy the canopy trail and enjoy the birds.

Possibilities, safetyHealth Hats: What haven’t I asked you that I should have asked about travel and disabilities? What should we share with the listeners and watchers?

Juve Acuna: They can feel safe. People will take care of them. Hotels or tour operators already have the experience approved by the tourism board and our company. They’re in good hands. I’ve done tours with blind people. I’ve had people who cannot talk at all and blind people with different disabilities, some paralyzed in the second vertebrae down. The tour is entirely different in the middle of the jungle, just to hear things and feel textures. It’s another world. Wheelchairs, we have all kinds of equipment that they can enjoy here. We have special equipment to take them from the chair to the bed if they need it.

Health Hats: Wow. Thank you.

Juve Acuna: You’re very welcome. You’re welcome every time you come to Costa Rica. It’s been my pleasure. Thank you so much.

Photo highlights of the trip

| Figure 5: Scarlet Macaw |

| Figure 4: Rio Fortuna Waterfall, Alajuela |

| Figure 7: Poisonous blue jean toad |

| Figure 6: Grey or Steel Iguana |

| Figure 9: Poisonous Yellow Pit Viper |

| Figure 11: Sloth |

| Figure 10: Volcano Arenal |

| Figure 8: Dozens of crocodiles sunning under Rio Tarcoles Bridge in Garabito |

| Figure 15: Humpback Whale, Manuel Antonio National Park |

Swimming in the Pacific Ocean

| Figure 12: Pacific Coast |

Juve planned a half-day catamaran excursion off the Pacific Coast. He stayed behind. We saw an adult and child humpback whale. The crew supported me in walking across the boat. They fitted me with a life preserver around my waist rather than around my neck so I could float and swim in 80-degree water for almost forty minutes. Again, terrified to swim, but unlike the suspension bridge, I felt completely safe in the water. Luxurious.

| Figure 14: Sunset on Pacific |

| Figure 13: Holding the sun |

Howler and white-faced monkeys

| Figure 17: Howler Monkeys in Aguirre |

| Figure 16: White faced monkey |

I spent twelve years as a back-to-the-land farm boy hippie in rural West Virginia, so I’m used to waking up to roosters. But Howler Monkeys at 4 am outside your window are deafening. Juve said they are the second loudest animal after the Sperm whale. White-faced monkeys are complete pests grabbing food off your plate in outdoor restaurants. Costa Rica allows no caging, taming, or killing of animals. No zoos. No culling monkeys.

ReflectionWalking trees most impressed me. Under the tropical canopy, these trees have been known to move upwards of five meters a year, around fifteen feet, by putting down and cutting off roots as they seek precious sunlight. The adaptability floors me. Disability feels like an experiment in adaptability, especially traveling with disabilities. At least twice a day over six days, other guides would stop Juve, tell him about some clients coming in a few days with x disability, wanting to do y, and ask where they should go and how they should prepare. That’s an effective network.

Podcast Outro

| Figure 18: Walking Tree, San Carlos |

I host, write, edit, engineer, and produce Health Hats, the Podcast. Kayla Nelson provides website and social media consultation and manages dissemination. Joey van Leeuwen supplies musical support, especially for the podcast intro and outro. I play bari sax on some episodes alone or with the Lechuga Fresca Latin Band. I’m grateful to you, who have the most critical roles as listeners, readers, and watchers. See the show notes, previous podcasts, and other resources through my website, www.health-hats.com, and YouTube channel. Please subscribe and contribute. If you like it, share it. See you around the block.

The post Costa Rica – Travel with Abilities first appeared on Danny van Leeuwen Health Hats.

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Matt Neil, teacher, offers a hopeful story. Not focusing on mental health per se but on belonging and inclusion in a typically lonely time – high school.

Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post.

Subscribe to Health Hats, the Podcast, on your favorite podcast player

This episode is best watched on YouTube

| Please support my blog and podcast. CONTRIBUTE HERE |

Episode NotesPrefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here

Contents with Time-Stamped HeadingsProem

Podcast intro 01:46

Health is fragile 02:20

Health class 03:35

Introducing Ambassadors 04:53

Sustaining the Ambassadors program 06:42

Three points of contact 07:52

New student defined 08:27

Back to school after a life-changing event 09:30

Kathy’s table 13:50

Prevention is invisible 15:26

A word from our sponsor, Abridge 18:18

Support and continuity 19:00

Continuity and diversity 21:23

Team leadership 22:42

Ninth grade 23:55

Perhaps they don’t want help 25:04

A lesson from failure 25:51

Standardization, data 27:53

Social health, a safe place 29:21

Loneliness, belonging, hope 30:50

Captain, CEO of your health team 32:48

What can we do to help young people? 33:42

Wisdom shared 36:06

Reflection 39:53

Nuggets from the Mine 40:42

What’s next? 41:18

Dr. Bonnie Engelbart, Primary Care 41:38

Podcast Outro 43:44

to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)

Please comment and ask questions

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, Twitter, Mastadon to @healthhats

CreditsMusic on intro and outro by permission from Joey van Leeuwen, Drummer, Composer, Arranger including Moe’s Blues for Proem and Reflection

Web and Social Media Coach, Dissemination Kayla Nelson @lifeoflesion

Intro photo of Vulture Couple by Rich Rieger used with permission

Image of emerging adult with mental illness and community collaboration from DALL.E

Photo by Alex Simpson on unsplash

Photo by Trung Thanh on Unsplash High school

The views and opinions presented in this podcast and publication are solely my responsibility and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Danny van Leeuwen (Health Hats)

Sponsored by AbridgeInspired by and grateful to Karl Madeo, Marc Lefebvre, Bonnie Engelbart, Ruben van Leeuwen, Kathy Bloom

LinksRelated podcastsSeries: Emerging Adults with Mental Illness

A Learning Community for CEOs of Your Health

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The ShowProemWelcome to episode #5 of the series: Emerging Adults with Mental Illness. So far, we’ve heard from two emerging adults and one parent, Emeka, Erika, and Annie. As we expand the circle around them, I wanted to hear from a high school teacher. I could have included a counselor or an administrator, but when I listened to my dear friend, teacher, and previous guest, Matt Neil, speak about the Ambassadors Program he sponsors, I knew this was righteous. Having already interviewed sixteen people for the series, I often feel hopeless. What a mess we’re in! Everything seems reactive to an inadequate, fractured, byzantine national mental health unsystem. Reactive by needful, helpful participants worn down beating their heads against walls. Reactive, not preventative. Matt offers a hopeful story. He’s not focusing on mental health per se but on belonging and inclusion in a typically lonely time – high school. Other than with family, emerging adults spend most time in school. Here we go. Enjoy and thanks for joining me.

Health is fragileHealth Hats: Thanks for joining me.

Matt Neil: Danny. It’s great to be here.

Health Hats: When did you first realize health was fragile?

Matt Neil: When my mother-in-law had cancer, my wife took care of her. How challenging that was with her being a caregiver. And she went to stay with her in Ohio for a while. And then her passing, and then also like my father-in-law, who was at the time seemed to be super healthy. He was doing burpees in my living room one week, and then the next week, he was gone. And those moments were just brutal. And I also think my grandfather had heart disease and got cancer, and I struggled with that when I was younger. I realized that, too, because he wasn’t that old in my mind at that time. And still, he was a younger guy when he got sick. And I think it’s just when you realize when you have loved ones who that happens to it makes you realize how important health is.

Health classHealth Hats: There’s a health class in high school, right? Do they ever talk about this kind of stuff in those health classes?

Matt Neil: I’m probably the wrong guy to ask that question because I’m a social studies teacher primarily, but I’m buddies with physical education teachers who primarily teach health.

Health Hats: Okay. So, it’s through physical education?

Matt Neil: Yeah. I would say that’s probably the number one way a high school addresses it. Let me give you the 32-second version: I think every state and school district is different. It almost always depends on. Do you have a good teacher in that position and a good curriculum that they’re supposed to teach? So, I think there’s this thing I like to call a new age or new wave physical education teacher who focuses more on health and a holistic approach to health and less gets on the line, we’re going to climb the ropes. When you think of a physical education teacher, and I’m friends with a few of those, and they do good work.

Introducing AmbassadorsHealth Hats: Okay. So, I wanted to talk to you because you’ve mentioned many times about the club you have where you welcome new students. That fascinates me, and I wonder if you could tell us about that?

Matt Neil: Thank you. I’m glad it fascinates you, and I’d love to tell you about it. I have a group of kids at our school called the Ambassadors. It’s hard to define because they’re like a club, but they’re also a group of students who are running a school program. And in our school, when you talk about clubs, often you talk about the other club I sponsor, the table tennis club.

This group is running our new student program. About six years ago, our principal came to me and said, we have this population of students in our school that are being, I think we miss them. I think they are lonely and being dropped into our school community, even though we’re all very well-meaning and everything, that they’re not supported. Will you do this? And I think he thought he was going to come to me, and I was going to go. But I just looked at him and said I would love to do that work. And that first year, our focus was, we were about halfway through the year when he talked to me about it. But our focus was no one eats alone, and we made sure that everyone in the cafeteria who wanted to sit with someone else had friends to sit with. And there’s a difference between putting someone at a table and actually sitting together, right? So, a group of these students and I worked together to ensure those kids had some friends.

Sustaining the Ambassadors programMatt Neil: We had a lot of success that first year, but it was very scrambly. It was me running around on my lunch, and it wasn’t going to work. So, I went to my principal and said, hey, this isn’t sustainable. We need time to meet. Let’s get this together. Let’s get it going. And in the past, there was a program that was doing this, but the school counselors ran it more, and it was an extra thing for them to do. Because of that, it was more like maybe you get a call to a kid, hey, give a kid a tour, then they’re on their own. But our group takes a much more heart-centered approach, and we take a more wraparound full we just want to scoop these kids up and bring them on board. Where we are now is a group of 78 current members. Every student in that group is teacher recommended for their ability to work with others, their kindness, their heart, and their willingness to improve the lives of others.

Three points of contactAnd that group, usually when a new student comes in, gets a tour of the building, that’s a detailed tour, as well as the opportunity to connect with people around. They get somebody to eat lunch with, and they get a check-in at the end of the day. And those three points of contact, as opposed to no points of contact, before making the student feel welcomed into our school community. And then the goal is to have that student remain a contact and a first friend for those students in our building, in our school community.

New student definedHealth Hats: So, define a new student.

Matt Neil: A new student is anyone you traditionally think of as a new student – someone who doesn’t live here and then moved into town and is starting fresh. That’s your basic, what you think of. It also can be students reentering if they were in a different placement or moving back. That happens way more than I think people realize. I think it’s kids between different parents or people changing their minds. They think they’re going to move away. They move back for whatever reason. Sometimes it can be a student coming back from they’ve been online, on, online for a long time, even in the district, but they’ve just been away. And so, they need that help. And then we’ve also, this year, made the big switch to consider every ninth grader coming into our building a new student. So, they get a little bit of a different experience. But the goal is to support them as well because we have 200 plus of them yearly, and they’re brand new to the building, even if they aren’t new to the district.

Back to school after a life-changing eventHealth Hats: I talked to a young man last week who had some real physical and mental challenges and ended up in the hospital for quite a while. After a challenging experience, their rehab was relearning to do almost everything. Yeah. And he said the hardest part was going back to school. That he had to learn to talk, to learn to walk, he had to learn to relate to his family and extended family. But he said it all paled to going to school because he had been in school before, but he was a different person from all this experience. He felt like a new student because he wasn’t the same person and didn’t want to hang out with people he knew before. And he had missed six months. And so, it made me think about your program because would he be considered a new student?

Matt Neil: Yes. When he re-enrolled, our school counselors identified the things you mentioned. So, I think this is an excellent opportunity to say that having caring, awesome human beings in positions where they work with kids matters. Because that student would sit with the school counselor and say, hey, here’s what’s going on, and they would say, I think you should be getting an ambassador because of this situation. And we do that with students who are reentering. And you saying that helps me because I’m going to flag that as a, I have a list of things and, just talking with counselors, here are the items that qualify. And I’m going to add, how would you say, how would you describe that kind of a student? Would it be a chronic I someone coming with a chronic illness or a lifeline?

Health Hats: I think it could be chronic or acute because it would range, it, it’s like some kind of crisis that led to an extended- extended meaning I broke my leg, and I was out for a week this was I was out for a while, and so that could be somebody who had a severe accident or somebody who had some kind of breakdown or crisis in their life. It’s great so much in, in my work of people managing these kinds of crises, whether acute or chronic. It’s terribly lonely. And often, we think about treatment, and I think the thing that when I first heard you talk about this program, I thought this is the first preventative program. I imagine I’m making this up, but somewhere between five and 80% of further deterioration can be prevented by having a table for lunch.

Kathy’s tableHealth Hats: I remember I was 18, and I got this job at a Catholic hospital in the laundry room, and a friend of mine, Kathy, got me this job. One of the things I noticed on my first week on the job is there were doctors’ tables and nurses’ tables. There were tables of housekeepers. And then there was Kathy’s table, which was just the most eclectic group. People wanted to sit at Kathy’s table because it was so diverse. And at that time, my idea of diversity was doctors, nurses, housekeepers, and laundry guys.

Matt Neil: Class. Yeah.

Health Hats: It was just fun. And it made the job. This was when it was throwing the laundry down the chute, and I was the guy that emptied the chute and whatever. So, then I’m getting dirty laundry. You’re walking around the place and people, whether they’re a doctor or nurse, and I don’t know what these people are. Everybody’s wearing scrubs. And it was just made like this horrible job of dirty laundry really fun.

Matt Neil: You’re on the team. You’re part of the crew.

Health Hats: I was part of the team.

Prevention is invisibleMatt Neil: Right? I could see you lighting up just talking about it right now. You just remember it. It’s this really fun thing. I agree with you. Boy, that makes me reflect just a little bit on my lunches the last few years with the pandemic being eating by myself most of the time. That that I’m missing, I’m missing that as well. That’s wild. Yeah. I will tell you that when we are successful, we’re mostly invisible in our work. Right? So, you don’t have the kid in. I do think you’re saying preventative, right? That preventative aspect. You head stuff off at the pass, and that kid is doing well, so none of the usual alarms trip that would say, this kid needs an intervention. Now we do stuff like that when the student needs extra support. But I just think that what you’re saying, I don’t know what it is. It’s the human connection thing. It’s the, yeah. Being more than just your role but being a person, and yeah. I think that’s how many kids feel about high school too, and about school in general, are they feel like a number and like they’re being processed. Yeah. So, when you put them, you say, Hey. We’re so happy you’re here. Every student that comes into the building gets brought to me, too, because our principal thought they should have one adult who welcomes them. Who sees every new student, who gets that kind of almost institutional knowledge that here’s the whole population,

Health Hats: Man, what a gift!

Matt Neil: it is. Because then you see those kids in situations where, you know, at the water fountain, and you say, hey, how’s it going? And they go, I remember you from, and it’s yeah and, I’m doing great, and usually it’s that, sometimes it’s not. But often you get that, how’s it going here? And how many years ago was that? And sometimes you can dig a little bit more, but I believe what you were saying watching you light up like that.

Health Hats: Oh, I’m 70 now. I was probably 17.

Matt Neil: And you still are lighting up like about it because it is. My, when I think about my lunch, yeah.

Health Hats: I only worked there for eight months.

Matt Neil: Yes. When I think about my lunch crew from a decade ago at my previous school, I think about my lunch crew here at my current school before I started eating by myself. I smile. You feel like you’re part of the crew.

Support and continuityHealth Hats: How do the ambassadors like to help each other out? Or even they age out of school, so you constantly need a pipeline of ambassadors. And I imagine that some of the work of being an A ambassador is just a hoot and itself motivates and self-drives. And then I think there are probably some significant challenges. Because some of us are just odd ducks. And sometimes, odd ducks are challenging.

Matt Neil: That’s three questions, but I love all of them, so I’ll answer them all. That’s great. The first thing you said is, how do they help each other? We started with, hey, here is your new student. You were your responsibility. And then we realized along the way that what the problem with that, there are several problems with that. If the relationship doesn’t work for whatever reason, you have someone who clashes, there’s no what do you? And then the second thing is you have no one with that context to talk to and work together to help. So, we started assigning two ambassadors to every new student. So, when they’re giving a tour, they have a partner. When they’re e eating lunch, we can’t always get it with lunch, but usually, that doubles the chances that they’ll have lunch with them as well. And so, they work together. Every new student who comes in throughout the year gets two ambassadors and their teammates that support each other. And that was one of the first things I realized when I started the group was the group had to have an identity, right? The group I needed to spend time building culture and training, training those kids. And it couldn’t just be a one-off training of here’s how you give a tour, yada yada, and you’re done. It must be transmitting and sharing values and how we do things. This is people like us do something like this, right? There’s a lot of that, right?

Continuity and diversityMatt Neil: So that addresses your second question, which is the aging out. One of the things I love about the group, it’s the biggest challenge running the group, and it’s also one of our biggest strengths, which is a lot of other groups in the school, for better or for worse, is made up of similar types of kids. and you know the simplest exp chess, club. Yeah. The simplest thing would be the chess club and the baseball club or a different group of people. Sometimes there’s a little overlap, but not a lot. But this group, we intentionally, it’s, to me, the biggest challenge when you’re putting the group together is trying to make it as diverse as possible.

And by diverse, I mean racial diversity, gender diversity, religion, all those things. We traditionally think of d diversity, but we also think of the different types of kids, like the drama kids and the nerdy kids, and I mean that in the best way. The athletes. Yeah. Yeah, totally. All sorts of kids because then you have more. Kids to pull from, to connect with. If that makes sense. Oh yeah. So that group comes in 10th grade, and I have had them for three years, which is super cool because the seniors mentor juniors, and juniors mentor sophomores.

Team leadershipMatt Neil: And what’s nice is, like, my leadership team running the group now are seniors and juniors who I’ve had for two, three, or four years. And so, they’ve grown, right? That first year it was not student-run. I was running around trying to help these kids. And as time has gone on, I’ve tried to put as much of the decision-making, running, day-to-day group, and everything with the kids. So when a new student starts. , the school counselor will email us. Usually, sometimes it’s a phone call, and that email goes to my officers and me. And the officers then select our ambassadors to match up, arrange it, and get them there. They do that whole thing so that they begin the process. Then they get the tour. Then afterward, those two who work together have a little sheet they fill out like how’d to go, and then that same group, a small group, follows up with them to see how it is. So that’s a thing. So, to answer your challenge question, like them aging out, it’s an excellent mentorship opportunity for me with those kids, which I just relish.

Ninth gradeHealth Hats: And I assume that all right away, even with the ninth graders as they’re meeting them, they’re like flagging kids. Ah, this person is ambassador material. Yes. So that the pipeline is primed.

Matt Neil: Yes. And I’ve taught ninth grade for 16 years. One of the reasons I’ve continued to do it is you’re able to see kids grow. Yeah. Because you know them when they’re 14, and you know them when they’re 18, and you see that growth. Oh yes. And I, my current president, I think I knew on day two or three of her being in my class in civics class. Oh, this, she’s one of, she’s one of us. Yeah. And it was because she was just helping everyone around her without, she, I was just like trying to I’m, looking over and she’s helped three people, and I haven’t even asked her to do that. And I’m like, oh, you’re one of us. That’s a good thing. I have a couple this year, too, where I’m like, oh, this one and that one, yeah. That’s a good point, Danny.

Created by DALL.E

Perhaps they don’t want helpMatt Neil: The challenge is that some kids don’t want help for whatever reason. Or at least they have a rough exterior. And to me, that’s the art of understanding teenagers. They don’t. They quote-unquote don’t want to bother them. I work with them on the difference between being too persistent, being in the kid’s face too much, and being too laissez. Usually, the kids, if they said, oh, I don’t need any help, they go, oh, okay. They take that very literally, and there is no second or third attempt. Hey, most of these kids think you’re fake friends. So, you have to overcome that with no, we want to be your friend, which is hard.

A lesson from failureMatt Neil: Our current treasurer is a serious athlete dude. Nice kid. I think he’s a state-qualifying pole vaulter. He is someone who, if you’re picturing a stereotype of like the big man on campus, would be, if you described him, the kid has a heart of gold. He is a great kid. He cares about others and is just a great, extraordinary human being. He shared a story last year in a big meeting. We were in the auditorium with everyone, and he said, I think I failed. And to admit that, he said, my new student got into a fight. Everyone couldn’t believe that this is what him, but this was him sharing out with a big group. And that moment changed our whole year because everyone realized he had said what had happened. Tell us about it. And he started telling the story and, here, he had done everything. Here’s what I tried and what didn’t work. But you can’t. There’s no saving. There’s only helping, right? And the kid chose to get into a fight, and he can’t keep him out of a fight, right? And so that was a great lesson for him. The humility was incredible. When you have this serious athlete, this popular kid sharing this out here’s my failure, I feel like I failed. The brand-new 10th graders who were in different cliques of students or whatever, who were ambassadors, go. He’s having this issue, so by sharing that, it’s okay to say, ” Hey, this didn’t go well. How? And he was asking for help, and they supported him.

Health Hats: Oh, it gives me goosebumps.

Matt Neil: Oh, me too. I tell that story way too much. And he said, stop telling that story. I have permission to share that, but he says all I did was be honest. I said, but that honesty is what gets us somewhere.

Standardization, dataHealth Hats: Oh, it’s huge. Yeah. Okay. What should we have talked about that we haven’t related to this?

Matt Neil: I love this question. I’m stealing this question from you, by the way. I want to ask you a question at some point, but I want to save that for a minute. I think we misunderstand how we should run all our organizations, especially our schools. We are very focused on the results of standardized tests and standardizing everything. And that standardization is the goal because we want to achieve good outcomes for kids. So, we want to standardize certain things, and there’s a place for it. But I genuinely believe that we have made a colossal mistake in the direction we take with education, where we have focused on how we can make these kids fit into the system. Even if we are adjusting for the kids, it’s still about driving those metrics and focusing on many buzzwords, the data. I have seen the data be kept for many different things. Often, we already know what to do. So, we need to do that.

Social health, a safe placeMatt Neil: To me, a big part of what we already know is to focus on the social health of these young people. I have seen in my time teaching that the social health of most, if not all, young people, is much worse than it was before. And we have seen that correlate with worse outcomes. Whether you want to talk about attendance, grades, risky behaviors, or whatever you want to say. If you feel like you’re a part of your community, you treat every moment there differently. And we need to be focusing on that. And I don’t know if you want to call it culture or what, social health or whatever you want to do, but the kids are happier, and the adults are happier in the building. The teachers are happier. Everyone does better when you focus on social health. And people talk about social-emotional learning, and it is that, but really, is this place for me? Is this a place I can feel safe? Is this a place I can learn? And that doesn’t mean you’re not challenged, because I think that’s another thing, a safe space people do. But what it means is, this place for me, do I belong here? Do people see me? And I think we need to spend a lot more time on that.

Loneliness, belonging, hopeHealth Hats: The episode I posted today was from a conference with almost a hundred patient advocates, and I interviewed 26 of them. I asked three questions with one of the questions, how do you recognize success in your advocacy? And I often heard three things: I’m not alone, I belong, and there’s hope. It’s profound. It’s so simple; as you said, we don’t need a study to know that those are important. I don’t care what the evidence shows. Aren’t religions based on this stuff?

Matt Neil: There are probably a ton of studies around this type of stuff, but we get so focused on looking at the data. Let’s do this. Let’s look at the people in front of us. Let’s listen to the people in front of us. There. There’s the evidence there, which are you. I have kids telling me that they feel lonely. I have kids telling me they’re stressed, have a ton of anxiety, and then when we put some of these things into place, I see thriving children. So, you want to do more. And, to me, that’s one of the ties to healthcare.

Captain, CEO of your health team 32:48Matt Neil: I’ve heard you talk about being the captain of your healthcare team, right? I don’t know if captain is the right word.

Health Hats: No, I’ve said the CEO, but it doesn’t matter.

Matt Neil: Yeah. The CEO o of your health. Yeah. When I’ve had small healthcare things going on in my life, I have felt that you’re on your own so much. That is one of the hardest things. I think across disciplines here. We should start to build the capacity and the understanding that this is the thing. It doesn’t mean other things aren’t also important, but this is the foundation for me. People are in a community rather than just being individuals alone. It’s individuals together, not individuals alone.

What can we do to help young people?Health Hats: You wanted to ask me something?

Matt Neil: Yeah, I wanted to say what, so you, I know you told me a little bit about how this kind of came up for you, and it was sticking out to you. Two questions. It’s a two-parter. One is how do you think, based on your experiences? I know you’ve talked to a lot of young people who have different challenges going on. What are some things that we could do to help those young people, especially when they’re coming into school?

Health Hats: Oh, gosh. I think you’re doing it. I talk to people. It skews towards people with so many issues to deal with. And I don’t want to say that it’s more than anyone else because your issues are your issues. I don’t know what value comparing has. But I think that the things we’ve been talking about, belonging, recognition, a feeling something positive might happen in this day, are so important. So, I don’t know that I have anything to add. I think it’s incredible. It’s so right, like Kathy’s table.

Wisdom sharedMatt Neil: Yeah, that’s helpful.

Matt Neil: On Monday, at 7:20 in the morning, I’m going to see sleepy teenagers waking up. The ages are going to be 15 to 18. And those young people, I’m going to be starting the day, and if I wanted to say, hey, I talked to Danny Health Hats about this. I was on his podcast. We were talking about these different things. If there is one thing you wanted me to share with them, and I will share it with them, what would that be?

Health Hats: This is such honorable work they’re doing. It is life critical. It has an impact for a lifetime. I think I’ve shared this with you before. My son is a first-grade teacher. One of the things that he does is greet everybody, all the kids, when they come in: I’m so glad you’re here. We’re going to have a good day. And then he shakes their hand on the way out. We had a good day. I look forward to seeing you tomorrow. Yes. And these are some troubled kids. They come from some rough experiences. And I just got the feeling that this might have been the most respect they’ve ever gotten. I think the ripple effect lasts a lifetime. It isn’t just for the ambassadees. It’s for them too. How easy it is. This is power. This is some awe-inspiring power. It’s the power of charisma. It’s the power of love. It’s the power of caring, which is just monster. My hat’s off. Thank you.

Matt Neil: That thing that you said about its honorable work, it’s life-critical work. I want to say that to administrators, parents, and people who run schools, and they think about what we should be doing in schools when you help that one child when they need it the most. You help that kid. That’s the number one thing. You change the trajectory of their life, or you could change them. Think about the thousands and thousands of people they impact. And how if you make their day and experience better, every negative thing if they’re going down a different path gets put on. So, it’s first, most importantly, for that kid. But then think about the impact that kid has and if you make their impact more positive, how that, thinking about ripple effects that can help your school, help our communities, and help everyone.

Health Hats: Yeah. Thank you.

Matt Neil: Thank you. This has been fun.

Health Hats: Very fun. Yeah. Alright. Thanks, man.

ReflectionDon’t you wish you had Matt as a high school teacher?! I was fortunate enough to have had two. Matt and his student colleagues build leaders, create belonging, and promote equity through mindful hosting and inclusion. Not too shabby. Perhaps this humanness might prevent some angst from spiraling into mental illness or aid those recovering. I needed this dose of hope and inspiration.

Nuggets from the MinePerhaps of interest to you, I started following Jonathan Haidt, a social psychologist at New York University’s Stern School of Business. He has been studying the contributions of social media to the decline of teen mental health especially teen women. Read his Atlantic article, The Dangerous Experiment on Teen Girls.

What’s next?Next, I’ll create an episode from my trip to Costa Rica, a nation welcoming people with disabilities. Then we’ll return to our series with a chat with Dr. Bonnie Engelbart, a primary care physician. Here’s a clip.

Dr. Bonnie Engelbart, Primary CareBonnie Engelbart: Certainly, as a family doctor, a lot of the care we provide is around mental health and depression and anxiety. Those are conditions that I would be managing, and I wouldn’t refer out. Certainly not as an initial step. I think the times when I would refer out would be if I’ve prescribed medicine and I’ve been adjusting medications and trying different things, and the things that I’m trying are not working. Obviously, if someone is suicidal, I will send them to the hospital. For people with severe depressive symptoms, I often will try to refer, but the reality is that there aren’t adequate resources. And so even with people who have significant illnesses, I am often the one that’s carrying that care for months before they can access mental healthcare. For things that are a little more complex, Bipolar or schizophrenia, schizoaffective, or something like that, we do have what are called eConsults, so I can take a history. Do my best job to ask all the appropriate questions and then share that chart with a psychiatrist electronically. They’ll review the history I’ve collected, and within a week, they’ll get back to me with recommendations about medications.

The post Belonging in School: #5 Emerging Adults with Mental Illness first appeared on Danny van Leeuwen Health Hats.

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Annie Schneider with Bipolar II, experiencing abrupt and slow simmering transitions from home, hospital, school. Develops agency, control, and trust. Powerful!

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Episode NotesPrefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here

Contents with Time-Stamped HeadingsProem

Introducing Annie Schneider 02:18

Podcast intro 03:18

Something’s wrong 04:07

Self-reflection 06:49

Something helps! 07:47

Diagnosis 09:32

Who is ‘we’? 11:31

Underwater 13:15

Friends 14:43

Hospital friends/peers 16:17

Not a medical hospitalization 16:47

Abruptly in 17:21

Survivor’s guilt 21:45

Abrupt hospital exit – discharge 22:46

Abrupt re-entry back to school 24:21

Familiar with what others may be experiencing 26:06

Just get over it 27:07

A word from our sponsor, Abridge 30:15

Toolbox 30:58

Physical tools – medications 32:56

Tools: sunshine, friends, and pets 34:26

Alcohol 35:29

Apps 36:27

What change would you make for best life? 37:57

Reflection 43:03

Next episode: Matt Neil 43:46

Podcast Outro 45:09

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CreditsMusic on intro and outro by permission from Joey van Leeuwen, Drummer, Composer, Arranger including Moe’s Blues for Reflection

Web and Social Media Coach, Dissemination Kayla Nelson @lifeoflesion

Intro photo of Vulture Couple by Rich Rieger used with permission

Image of emerging adult with mental illness from DALL.E

Photo by Stormseeker on Unsplash underwater

Photo by Khamkéo Vilaysing on Unsplash reentry

Photo by Colton Sturgeon on Unsplash Meditation

Photo by Trung Thanh on Unsplash High school

The views and opinions presented in this podcast and publication are solely my responsibility and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Danny van Leeuwen (Health Hats)

Sponsored by AbridgeInspired by and grateful to Emeka Chima, Erika Blair, Sue Donnelly, Matt Neil, Bonnie Englebart

LinksBipolar IIHeadspace’s website: https://www.headspace.com/

Related podcasts

Young Adults with Complex Conditions Transitioning from Pediatric to Adult Medical Care

Series: Emerging Adults with Mental Illness

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The ShowProemWe continuously cross thresholds in our lives; a beginning, a change – before we weren’t, now we are. We transverse a physical threshold when entering a building, a room, or a town; when we enter a community, a relationship, or an experience. We step over a threshold as we enter a clinic, go for a test; when the doctor or nurse enters the room or responds to a text; when we call our insurance company; when someone asks, how are you? We cross a threshold when we feel a lump, hear a diagnosis, throw up, panic, feel pain, or fall. Before, we didn’t. Now we do. Thresholds can be barriers or opportunities or barriers and opportunities. Crossing a threshold can present us with limitless possibilities. Who knows what might happen? Anticipation, excitement, hope. Some thresholds upset our sense of balance, our inertia. Why me? Distraction, hopelessness, annoyance, frustration, fatigue, even rage. Crossing a threshold can energize or suck energy, depending on the moment and perspective.

Welcome to the fourth episode in a series about Emerging Adults with Mental Illness. We met Emeka Chima and his mom Erika Blair. They shared a story of fear, hope, and recovery. You can find the introductory episode and Emeka and Erika on my website health-hats.com/pod with links to the YouTube versions.

Introducing Annie SchneiderMy friend, Sue Donnelly, introduced me to her niece, Annie Schneider, a recently emerging adult with mental illness. When Annie and I met, I felt disoriented as I don’t associate bubbly and major depression. What do I know? Annie readily agreed to record a chat with me. Annie lives in “Sunshine City,” more formally known as St. Petersburg, FL, with her boyfriend and a Blue Quaker Parrot. She enjoys writing, watching documentaries, eating chicken Pad Thai, and taking her coffee black. Annie works as a content creator and copywriter at a small marketing agency downtown. Notice Annie talks about thresholds, abrupt and slow simmering, home, hospital, and school.

Podcast introWelcome to Health Hats, the Podcast. I’m Danny van Leeuwen a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all of this.

Health Hats: Annie Schneider, thank you for joining us. I’m delighted that you’re here. Of course. How did you experience that something was wrong, seriously wrong?

Something’s wrongAnnie Schneider: To be honest with myself and my story, I always felt a little different. But my parents came to me to talk about my health and get me on a journey to figure out what I was going through. And I remember it happened in the summer when I was, I believe, 15. I feel a little bit bad cause my parents aren’t here to share their side of the story. But from what I remember, when I was 15, over ten years ago, things were not right, and I was not my best self in many ways. And I was struggling a lot. And I think my parents noticed it in me first. But eventually, I very quickly saw a lot of it. I was unfocused in school. I had a quick temper. I just had a lot going on that was not healthy.

When we’re teenagers, we have mood swings and all kinds of ordinary things. We’re all humans. But I was not like other 15-year-olds. I had a lot of preoccupation and obsession with negative thoughts and patterns and was unfocused in school. Later, I find out from my mom. She, of course, didn’t tell me at the moment. Later, I found out I had a very glassed-over, glazed-over look on my face and in my eyes a lot of the time, I didn’t have a lot of I know it sounds kind of cliche and kind of dumb, but I just didn’t have a lot of my spirit. I was kind of a shell of myself starting at 15. At least that was when it turned into a healthcare journey to recover and get well.

Health Hats: You’re describing what’s going on in your life, and you’re doing what you’re doing, and sometimes you’re miserable, and sometimes you’re not. Sometimes life is okay. I’m just interested in that self-realization part of it. It’s tough for me to relate. Recently, I took a medication that made me so despondent, and I was like, oh my God. I said to Ann, my wife. Something is wrong. This is not me. But that was dramatic. Something dramatic changed.

Annie Schneider: Something acute.

Self-reflectionHealth Hats: Yeah. On the other hand, if things are slowly deteriorating. Sometimes it’s hard to know. Hard to see that and self-reflect. Was it when your parents said something to you that you began to like self-reflect? Yeah.

Annie Schneider: I’m 26 now and have a hypersensitive experience when I know something’s not right in my body or mind. But when I was 15, I think I just thought that like life was just like this. Yeah, it wasn’t an acute experience. Yes. I think what you’re saying, like you took medication, so you were very like, whoa, I feel different. Yeah. It was not an acute experience. It was a slow simmering. Yeah. Something’s not okay, and my brain’s not firing in the healthy ways it needs to be.

Something helps!Health Hats: Was there a place where you started to feel this could be helping me? This is helping me. I am feeling better. What was that like?

Annie Schneider: Oh. Weirdly, it’s hard for me to remember a moment to realize I wasn’t well. Yeah. But I can remember the moments when I realized, oh my God, this helps. Or, oh my God, I’m feeling terrific. It shows you don’t know if something’s wrong until something gets fixed, or you don’t have something anymore.

Health Hats: Contrast is amazing, isn’t it?

Annie Schneider: And then you’re like, I’ve been feeling this way all this time, and all I had to do was X, Y, Z. So, I can remember particular times and situations that I realized something was helping and making me feel much better. But I can’t remember when I started not to feel well. I’ve taken all kinds of medications before. And some medicines did help, so that would be noticeable. Some medications didn’t do much for me. The journey with medication is very up and down when you’re figuring out something that’s working for you. I’ve probably tried maybe nearly ten different types of medication. But as soon as we realize something isn’t working, don’t take it anymore. Figure out something else. Therapy is something that always made me feel better after. It still makes me feel better when I go now. I think treatment makes you think of surgery or medication, but there are a lot of like treatments that, after the fact, you realize that it helped. Yeah.

DiagnosisHealth Hats: Were you despondent, and then you got a diagnosis of depression? Yes. Your doctors want to get paid, so they must label it to bill for it. What is that?

Annie Schneider: Yeah. A lot of the symptoms that I was showing were very much textbook depression. I was a little bit hyperactive; now you use the word manic. But I was heavier in depressive symptoms. Fit that like a perfect puzzle piece. But I got diagnosis with Bipolar II. The generic understanding of bipolar is the equivalent ups and downs of mania and depression. Your manias up here and your depression’s down here, and it’s a big wave. Bipolar II is still bipolar disorder. There are still manic episodes, but they’re much smaller, less severe, and less frequent. And depression is what is the more serious piece of it. That was my diagnosis. So, we treated it a lot like treating depressive episodes and mood stabilizing. I tried taking antidepressants when I was younger. They didn’t do much for me because I didn’t have clinical depression. Mood stabilizing medications take my waves from being like this, giving me more normal. I don’t want to use the word, maybe normal is not the

Health Hats: No, normal. The human condition is variable.

Annie Schneider: The big waves that if I’m not taking care of myself, it takes me more down to what other average people who don’t have a mood disorder exhibit.

Who is ‘we’?Health Hats: So, it seems like you say a lot, we. Are you and your parents, or is there a larger team when you say we?

Annie Schneider: Yeah. I do not realize that I’m saying we, but I think because I have such a supportive and loving family. I believe we is the word I’m going for, mainly because I was young, like when all of us were coming to fruition—very much still part of my family unit, in an integral way. But yeah, my team, I’m incredibly fortunate that I had such a team when I was younger and later in my hospitalization. My team included my fabulous psychiatrist, who I was so sad about when I grew too old to see him anymore and had to go to an adult doctor. But he works at a children’s hospital, and when you turn 22 or 23, they’re like, you must go. But he was incredible. And he’s known me since I was probably younger than 15. Maybe 11, 12. And then my therapist is still my therapist, so he’s also known me for a considerable part of my life. When you’re the age I was when all these things were happening, you’re at school just as much as adults are at work. Your school team is just as much always there—they’re such a large part of your life. So the guidance counselor at school was really important to me at the time and still is important to me and my story. Then my parents, all of them together, really looked after me.

UnderwaterAnnie Schneider: I was just in such a funk. To people that don’t understand how depression feels, I always describe it as feeling underwater. It’s like you, and maybe other people would describe their experience like that too. But that’s the best way to describe it because it’s like you’re underwater. And you want so badly to get out of the water and everything above you. You can see the world around you, but things are blurry, and you don’t even really hear the same sounds you would if you were above water. Not literally, but just that notion of you’re in the world, but then you’re not. You’re underwater. I still describe it that way.

Health Hats: Very descriptive,

Annie Schneider: Thank you. Yeah. So, while underwater, if I’m going to use that expression. And because I was at the age that I had many caretakers that all have been so important to me. And now that I’m 26, I still would call them my team, but I’m much more of an adult now who understands my body, probably even more than if I hadn’t gone through what I had gone through. And I do still see a psychiatrist just for a regular check-in. I don’t see my therapist regularly, but if I’m going through something where I feel like my mental health is starting to tank, I go, Hey, you want to talk? And so I still have a team, but it’s less hands-on, less intensive because I was a teenager then. I was not on my own. I did not have the wherewithal, I guess, to navigate all this alone.

FriendsHealth Hats: Did you have friends at this time? And I guess I would say let’s define friends. On the one hand, peers that sort of got you, cared about you, and were there for you. And then some peers don’t. What was that experience like people you went to school with, or I don’t know if you went to church or whatever, wherever you went?

Annie Schneider: Yeah, it’s fascinating. And it might even be peculiar. Although I was not my fullest self at this time during high school, and not well, I was underwater, and all those things. I did have quite a normal healthy social life. I had a lot of the same friends that I had for years and years. I was dating. My social life was not impacted. I don’t know if maybe you’d ask my friends today if, perhaps, they noticed that I was off or something. I’ve never really talked about it with them; go back to those times. But it’s funny. It’s until someone points out something wasn’t right, maybe you didn’t even realize it cause you’re like, this is just my normal. I did not have enemies or bullies. I’m very fortunate that I did not face anything like that. So those kinds of things were not detrimental to my mental health situation.

Hospital friends/peersWhen I was hospitalized, many of the girls I housed with there, although we had distinct situations, there was a camaraderie because we all were in this uncomfortable, scary, and intimidating place. I didn’t come out of it with friends per se, but people I bonded deeply with because we were all going through something life-changing together. We were doing hard work, exploring ourselves and our health.

Not a medical hospitalizationThis isn’t going to the hospital and laying in a bed hooked up to cords and machines. It was like a behavioral rehabilitation kind of hospital. It’s kind of like a little campus. There are dorms, and there’s a place where you eat together. I was in school while I was there. I was in the local public school system technically while I was there. So, it wasn’t a college campus, but it felt like a campus. So, when I say hospitalized, I’m shortening it to explain that experience.

Health Hats: Okay. Good. Thank you.

Abruptly inAnnie Schneider: It is not like a medical setting hospital. It wasn’t like that. But yeah, just as much as I abruptly went in. I also abruptly came out, and I abruptly went in because, again, I was underwater, unaware of anything happening in my world. I was very numb. I was, my, my grades were just tanking. I was just not sleeping. I was not even eating regularly. I was having trouble managing my anger and temper—just a slew of things. I’m sure my mom and dad have their recollection of all of that, but I was just a mess. And one night, it was maybe late in the afternoon, my mom and dad wanted to talk to me, and they had been working with, I believe, my team that I was referring to earlier—my doctor and therapist and the guidance counselor in the school. Everybody was on board with this plan that a great place for me to get away from all the distractions of regular teenage life, be with myself, work on my health, and get the help I needed was to go to this rehabilitation center. And, of course, I despised the idea. I was angry that my parents wanted to send me there. I did not want to be ripped from my friends. I did not want to be ripped from my school. I felt like I was just being plucked out and put in prison. That’s how severe it felt at the time. So, I very abruptly went in. It was a bad day. Sorry, I didn’t know I was going to cry.

Health Hats: It was a bad take a moment. It’s okay. You’re fine. Just take a moment.

Annie Schneider: It was a bad day. I just remember very specific memories from that day, so that’s why I’m just kind of getting choked up. But it was a bad day, and my mom and dad were doing what they could do to do the best they could do for me. It was tough to be dropped off there. And yeah, I still see physical scenes in my head of seeing them leave, and I remember what I ate that day. It’s incredible. And so that was October 10th, 2012. And just as much as I was scared to go in because I felt like I was going into prison. It felt like that for me at the time. Cause I was just so miserable. And it was a place where the system. That’s a whole other conversation, probably, but it’s a place where they were doing the best they could, is the nicest way to say it. I have no negative thoughts towards the staff, how the hospital was run, or things like that. There’s only so much that healthcare, especially mental healthcare, can do. So, it was a perfectly fine place for what they had the resources for. But it felt like a prison. We were very protected. There was not a lot of privacy because of the concern of patients harming themselves or others. And again, people came in with all kinds of different situations. So, it was not even just depression; I had roommates with anxiety, eating disorders, trauma victims, the PTSD. I mean, like the gamut of all the awful things that people might face in their life. We showered with the door open, with no privacy. So, it felt prisony. We got one 10-minute phone call every day. I thought at the time that seemed cruel. We’re told that the reason is to keep yourself focused on what you’re doing here. The work you’re doing here. It’s rehab. It’s the same way you would, I don’t want to say it’s the same way you would treat people recovering from drugs or something, but any focus on anything outside of your recovery was possibly not going to be helpful. Yeah, so 10-minute phone calls and the people that could come to visit you were a very strict select group of people. And for many patients, that was important because you wouldn’t want bad influences from the past or harmful family members to come by or things like that.

Survivor’s guiltAnnie Schneider: I had felt like this in the hospital too, where I feel incredibly fortunate to have had the people and resources I had with my story. Because I feel like I’m in the rare category of people with the resources and abilities to be properly cared for. And I’m humbled and feel very privileged to have those things. In the hospital, I was the one that always got mail. I was the one that always got solid, happy, healthy phone calls with family. Like it was almost embarrassing. I almost felt survivor’s guilt sometimes in the hospital.

Our conversation shifted from abrupt entry to abrupt re-entry. Entry into hospitalization and re-entry into life before hospitalization

Abrupt hospital exit – dischargeAnnie Schneider: Reentry. So I went on October 10th, 2012, as I said. And then I assume it must have been somewhere around November 8th or November 9th. A staff member. I just remember it was a woman. Oh, my goodness. I don’t even know her role at the center, but she wanted to talk privately with me, and she was like you’re going home. And we’re preparing like a, it wasn’t called a reintegration plan, but essentially that’s what it was. It was a big fat binder of exercises and things to remember to do to maintain my health and everything. And at the time, I was just what they thought. I’m ready to go home. This is like great news, all this. And I was so excited to go back. And then I find out later that it’s not that they thought I was completely ready to get back. It’s that it’s all the insurance. The 30 days were up, right? So that’s why it was October 10th. November 10th. And naive me was like, oh, yay, I’m better. And it’s just because if I stayed there, my parents would be in debt. And that’s a whole other system topic about healthcare and mental healthcare specifically because I think a lot of the world still doesn’t take mental health care as seriously as other parts of your body healthcare.

Abrupt re-entry back to schoolAnd then the other significant component was that I was not returning to class. I was going to return to restart junior year the following year. So, where I was supposed to finish my junior year and become a senior soon with my friends, I stayed back. I redid my junior year. Academically looking back, it was really smart for me to do that. I got a much more solid school year out of doing another year rather than scrambling to catch up with what everyone else was doing and where I was supposed to be. But socially, it was tough. I never made a bold announcement or anything to tell my peers what I was doing. My close friends knew what was happening, and the school knew what was happening. But my average classmates I wasn’t close with just found out by accident. Oh, I guess she’s just not in our class anymore. So, it just was socially weird to start the senior year and not do all the same things with all the people I grew up with. It was weird to be at their graduation and sing at their graduation, but I didn’t have a cap and gown on. So just a lot of strange little things like that. But I never got any kind of like negativity from it. Just a lot maybe confusion in my class. But ultimately, it ended up being one of the best things I did. I was 19 when I graduated from high school, but I didn’t care because I got to have another solid year to do my schoolwork. And I was a musical theater and an athlete student, so I got more time to do those things. And I got another prom. There were perks to it. Yeah. But also, it was vital for me to do that.

Familiar with what others may be experiencingHealth Hats: You’re like ten years out or seven years out. You’ve had this experience. I’m sure in your world, whether at work or socially, you might look around the room or meet people, and you can tell they’re going through this familiar world. Then what do you do? Do you interact?

Annie Schneider: I have a very hypersensitive sense of myself, as I said earlier, but I can tell when others aren’t. If I thought to myself, this person seems a little off, or they’re, I would put money down that they’re going through X, Y, Z, yeah. I’d say I’m probably correct almost all the time.

Just get over itI remember very distinct situations and different times, but maybe I remember two stories. I’ll start with college. Just go chronologically. But I had a wonderful friend who lived in my building, and she was just not well. She was very much in her room, in her bed all the time. She was crying a lot. She was very despondent and very, very numb. She just wasn’t okay. And there was one time when we were hanging out, and I talked with her. I tried to gently open the conversation by saying, ” I’m sorry that you’re going through things right now. Have you ever talked to anybody about it? That’s usually my first go-to thing. Yeah. Have you ever spoken to anyone you trust about something you’re feeling or going through? And if I remember correctly, she almost explicitly told me I was depressed. And I believe she told me that she had been trying to tell her family that she didn’t feel well, and she hadn’t felt well for a long time, and her family just did not want to discuss mental health. There’s, unfortunately, still, in 2022, a ton of stigmas about whether it is real or should people just get over it. Or yeah, and those things make me angry. I can say it nicely because don’t you think if people wanted not to feel that way, they wouldn’t? Cause if it was in your control, wouldn’t you just wake up and stop feeling that way?

Health Hats: If my pancreas isn’t working, it’s your problem. You’ll get another pancreas. Work on it, for crying out loud. Get your pancreas to produce insulin.

Annie Schneider: But anyway, it humbled me to hear this friend in college say that like she’s telling people, and no one’s listening. I got her turned on to thinking; it’s okay to feel like this. Lots of people feel like this. I’m not sure where she took that. But I feel confident that we left certain conversations on that theme of she was, oh, and having realizations of I’m not crazy, and you’re telling me I’m not crazy. You can go through this, and there’s hope to feel better because you feel better. I’m not sure where she’s at now, but she stuck with me and humbled me hearing about her situation. And then another person I know, something similar where they were just very aware that they were not well. And I went through the same thing with them. Do you have resources? Do you have people you’re talking to? It didn’t go anywhere. But there was a feeling that I got when I did too much. There’s a threshold for humans to be caring. And then there’s also a threshold, though, where you’re like, I can be caring. But maybe when it gets to this point, it’s not my business anymore. I can’t micromanage somebody to get help. You don’t want that anyway. If they want help, they have to do that for themselves. It sucks to say, but it’s just true.

A word from our sponsor, AbridgeNow a word about our sponsor, ABridge. Record your healthcare conversations with doctors and other clinicians with ABridge. Push the big pink button and record. Read the transcript or listen to clips when you get home. Check out the app at ABridge.com. or download it on the Apple app store or Google play store. Let me know how it went.

ToolboxHealth Hats: So, let me ask you a different question. So, it sounds to me that part of the work that you did was to develop a toolbox of things that would be helpful and that you ended up with a reasonably robust toolbox. I have MS, and I have a toolbox. I feel confident that none of my tools will work every time and that I can usually find something that will work. I can try three things when I feel like my toolbox is together. Yeah. Then I’m rich. Because stuff doesn’t work, and you want the second level. What are some of the tools that you developed in your toolbox?

Annie Schneider: I think I first would say just generally on the toolbox topic, I would sum up a lot of this by saying that if there were a magic pill or like a magic spell or like a magic thing to eat, there would be no mental health issues because we would know the answer like and that, and I think you could say that to any issue or disability. Or illness or syndrome, or there are no perfect answers. Cause everybody is different, and then everybody’s resources are different. Regarding my toolbox, I’ve never written down a list of everything I do. But my toolbox, I guess, is a combination of physical, actual things and behaviors or refraining from certain behaviors.

Physical tools – medicationsHealth Hats: So, like physical things, does that mean going for a run, breathing deeply? Is that what you mean by physical things?

Annie Schneider: Physical things? I’m saying like medications. Okay. Maybe primarily medications. Cause a lot of it is also behavioral and like action based. Medications did change everything for me. I’m taking much less medication than I did when I was younger. Some of it I’ve discussed with my doctors due to my age and my brain maturing, but also, many environmental factors still influence everything. I’m very fortunate right now that I’m in a stable, successful life with good friends, a boyfriend who takes care of me and loves me, and a job in which I’m good. Medication, though, still is vital and especially for many people. I want to be careful not to preach medication in a perfect situation. It’s not perfect. They’re going to come with side effects. I’ve taken some that made me gain weight and some that made me lose too much weight. Some made me dizzy and feel awful, and some made it hard to wake up. And so that’s what I was talking about earlier. Medications are magical. It’s great that we have that medical technology, but some aren’t going to be good for you, some will be okay for you, and some will help. So, medication is a piece of the toolbox.

Tools: sunshine, friends, and petsBut sunshine and daylight and fresh air have always been essential to me. My loved ones, like my friends and boyfriend, sometimes tease me that I always have open windows, so it’s so bright here. I don’t want to feel like I’m in a cave, but too much of being in the dark all the time would start to influence my mental health. So, there’s that in my toolbox. I don’t even know what that would be called. I guess just like seeking natural light. But the sun is a natural thing our primitive bodies and brains need. Yeah. It’s not natural for us to be in the dark all the time. I’d also say something that helps is being around loved ones, family, and friends when I am struggling. Pets are very powerful. I’ve had some hard times here in our apartment now where I’m like. I’m going to go pick up the family dog, Lucy. Having Lucy around will instantly lift me a little. So that’s something that I do.

AlcoholI love to drink alcoholic beverages and drink alcohol and socialize. And I love to celebrate with alcohol. But I am careful with it. Too often, I had too much, maybe not too much in a way like too drunk or something. But too much in that the next day and even days afterward, I felt emotional effects from the depressant nature of alcohol. I’m careful not to drink, especially if I’m already going into it in a negative mood. I only want to touch alcohol if I feel neutral, happy, celebratory, or whatever. I’m never going to drink to make myself feel better if I’m sad or angry or to escape from something. I’ve never had the desire to, but I’ve also just pledged myself, like, I’m not going to touch that stuff because that’s going to be awful for the next few days of getting through whatever I’m going through.

AppsHealth Hats: There are all these different apps out there. People say these apps are for meditation, for social networking. Are there any virtual tools that you use?

Annie Schneider: Virtual tools. Not so much. I’m a traditional paper and pen girl, to be honest. So, I do like to journal, especially if I’m going through tough episodes with something. But as for apps, I guess one that is quite relevant to my mental health and mental health for users would be Headspace.

There are probably a lot of resources within it, but essentially, it’s a lot of like meditative, like narration and music. It’s kind of like podcasting. You just turn something on while you’re trying to meditate. It’ll be like guided meditations, stories that help you just lull into sleep and get into a dream-like mindset to relax. There are products to listen to, focus on, rest, elevate creative energy, etc. But I always almost religiously used it for sleep. I would play like the relaxing nighttime featured things.

What change would you make for best life?Health Hats: I ask you one more question. So, what change would you make for young adults with mental illness that would help them live the best life they could live?

Annie Schneider: My role as a patient and someone who’s been through a lot, I’ve always thought like I have a unique voice that can help people by just starting the discussion, keeping the discussion healthy and accurate, helping people adjust skewed perceptions of what mental illness can mean and what it looks like. And it’s not just stuffing pills down your throat. There are a lot of still nasty misperceptions and flawed perceptions out there of what it all means. If the question is what I would change, right? Yeah. For youth?

Health Hats: I can feed you what I’ve heard you say. Okay. I think what you’ve talked about is you’ve talked about family. You’ve talked about getting help early. You’ve talked about hope. But if you were king for a day and you could wave your wand, something would be different that would benefit young adults with mental illness.

Annie Schneider: I’m geared into wishing that mental health was better understood. And I don’t know if that’s something I would have to say to the medical or general community. But something really big, and I wrote this down because it’s like the theme of everything that I want to talk about most in general in life, but also here is that treatment doesn’t have a face, and recovery doesn’t have a face because treatment and recovery are going to be so different for everybody.

Health Hats: Really, it’s what you’re saying; it’s not one face.

Annie Schneider: One face. Yeah. I want to destroy any perception that this mental illness looks like this, and this is how you treat it. I think that is such a, you don’t do that with cancer, and you don’t do that with heart disease, and you don’t do that with MS. It’s not a good way to look at health. Health and the human body are so much more complex than that. I think a lot of people fear, like, maybe they don’t want to talk about something that they’re struggling with mentally because they’re afraid that they’re going to get prescribed medication or something.

And while that might be something that helps many people, cognitive behavioral therapy also is therapeutic. And it can genuinely impact you. Also, surrounding yourself with healthy family and friends and a healthy environment will affect you. In addition to what I struggle with in terms of mood, I mainly suffered from panic attacks for episodes in my young adulthood. And I changed certain things in my life. , I changed jobs, and I got out of stressful situations and stressful social situations. And I didn’t do that to get out of panic attacks, but since I made those changes, I haven’t had panic attacks. So, the environment is crucial as well. So, any perception that like treatment looks like this. I think that’s my biggest hang-up. Yeah. Is that it? It’s not cookie cutter, not cookie-cutter. It shouldn’t be intimidating because there are a dozen ways to help. And it’s about finding what mix of all those things works with you, your situation, and your body.

Health Hats: That’s brilliant.

Annie Schneider: It was nice to talk about all this. Yeah. And I just celebrated my 10th hospital anniversary on November 10th. Yeah, and so it. I do.

Health Hats: Congratulations

Annie Schneider: Because those days were already burned in my mind anyway. Right the way a birthday or something is burned in your mind. I’ve accidentally been counting them, and I realize it’s 2022, which means this is ten years. I was not expected to graduate high school, and I wasn’t supposed to go to college. My future was super unknown, and I graduated from high school. I graduated from college. I’m in a healthy relationship. I have friends and a job and care for my health independently. And a lot of it was me doing that for myself and my team and all the support I had when I was young. And it’s a combination, but. There’s hope. I don’t hope such a cliche word. If other people who might be listening have been through certain things that sound like mine, it’s not the end. Like, where you’re at right now is so not the end.

Health Hats: Thank you. Thank you so much. This has been great. Oh, thanks, Danny. I appreciate it.

Reflection 43:03Annie decides whether to cross a threshold. The threshold of helping. She has agency and control. Powerful! Annie also started with a foundation of trust with her family, even if that trust took a body blow when she went to inpatient psych.

Next, we will hear from Matt Neil, a high school teacher who builds belonging. High school students cross a threshold to an unfamiliar place and purposefully belong. Here’s a clip from that inspiring episode. Thanks for joining me.

Next episode: Matt NeilI have a group of kids at our school called the Ambassadors running our new student program. About six years ago, our principal came to me and said, we have this population of students in our school that we miss. They are lonely and being dropped into our school community; even though we’re all very well-meaning and everything, they’re not being supported. Will you do this? I said I would love to do that work. Our group takes a heart-centered approach. We just want to scoop these kids up and bring them on board. We have 78 current members. Every student in that group is teacher recommended for their ability to work with others, their kindness, their heart, and their willingness to improve the lives of others. When a new student comes in and gets a tour of the building, that’s a detailed tour and the opportunity to connect with people. , they get somebody to eat lunch with, and they get a check-in at the end of the day. And those three points of contact, as opposed to no points of contact before, make the student feel welcomed into our school community. And then the goal is to have that student remain as a contact and a first friend for those students in our building,

The post Crossing Thresholds: #4 Emerging Adults with Mental Illness first appeared on Danny van Leeuwen Health Hats.

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3: Erika Blair, proud of son, Emeka Chima. Found professionals with lived experience, integrated teams, positive support & a sense of hope from other parents.

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Subscribe to Health Hats, the Podcast, on your favorite podcast player

This episode is best watched on YouTube

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Episode NotesPrefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here

Contents with Time-Stamped Headingsto listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)

Proem

Challenges of multi-media. A note to followers. 01:14

Podcast intro 02:48

Health is fragile 03:22

Proud of your son 04:19

Getting to diagnosis 04:50

Help in school 06:33

First psychotic break 07:36

Finding integrated help for the family 09:03

Goal-based care 10:44

IEP finally 11:18

Transitioning back 12:17

A word from our sponsor, Abridge 13:00

Freaking out together 13:44

Questions for professional helpers 14:51

Do professionals have lived experience? 16:19

Giving back 17:14

Hope 18:10

Family on the team 18:49

Early intervention 20:15

Students with Psychosis 22:29

Positive support for parents 25:02

Reflection 27:09

Annie Schneider 29:19

Matt Neil 30:23

Podcast Outro 32:13

Please comment and ask questions

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram, Twitter, Mastadon to @healthhats

CreditsMusic on intro and outro by permission from Joey van Leeuwen, Drummer, Composer, Arranger including Moe’s Blues for Reflection

Web and Social Media Coach, Dissemination Kayla Nelson @lifeoflesion

Intro photo of Vulture Couple by Rich Rieger used with permission

Photo by Nick Fewings on Unsplash

The views and opinions presented in this podcast and publication are solely my responsibility and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Danny van Leeuwen (Health Hats)

Sponsored by AbridgeInspired by and grateful to Matt Neil, Annie Schneider,

LinksIEP (Individualized Education Plan)Asperger’s SyndromeDSM VJohns Hopkins BayviewJohns Hopkins’ Early Psychosis program

National Association of Mental IllnessStudents with PsychosisRelated podcastsYoung Adults with Complex Conditions Transitioning from Pediatric to Adult Medical Care

Series: Emerging Adults with Mental Illness

To subscribe go to https://health-hats.com/

The ShowProemMy privilege offers little experience with the loneliness of severe illness without reliable support. Meaning I have fantastic support. I seldom experience profound loneliness. Hope and support go together. Hope and support provide a foundation upon which to build spiritual health. Spiritual strength hastens recovery toward best health. Much support comes from caregivers, be they family, friends, or professionals. Caregivers are necessary for best health for those of us with disabling chronic or acute illnesses. Hence, the second episode in this series about emerging adults with mental illness centers on a mom, parent, and caregiver: Erika Blair, mother of Emeka Chima. I’m grateful to Erika and Emeka for their willingness to share their journey with us.

Challenges of multi-media. A note to followers.I realize that my inclusion of video in my production channels can create some dilemmas for readers and listeners. You can’t see the videos and might miss guests’ body language, scrolling images, and print. I try to stay aware of these dilemmas. When I started my podcast, many blog followers thanked me for my years of content creation and prepared to move on. Not wanting to lose a loyal audience, I created article-grade audio transcripts. Verbatim audio transcripts underwhelmed me, so the effort to edit for readability was worth the many hours’ effort to edit for readability. I use the app, Grammarly, to help me. Now I spend much of my time learning the nuts and bolts of video production, with help from my grandson and thoughtfully using alt-text for images, so followers with limited sight can appreciate those images. For those not looking at the video version of the podcast, please let me know when something in the audio doesn’t make sense because you’re missing something. Help me learn. Email me at danny@health-hats.com or go to my website, health-hats.com, and leave a comment.

Health is fragileHealth Hats: Erika, thanks for joining me. I appreciate it. When did you first realize that health was fragile?

Erika Blair: Oh, when did I first realize health was fragile? I realized health was fragile from a young age. I’ve had a lot of health issues growing up. So, I’ve always known that. Is this specific to my son?

Health Hats: No, I was asking about you.

Erika Blair: I’ve always known that health is fragile. I had a lot of GI issues growing up. I had a lot of surgeries from a young age, more than many people.

Proud of your sonHealth Hats: That must be challenging. You must be proud of your son.

Erika Blair: Very proud of him. He is not only a great help and support to our family and me, but he has so much to give to others, which is very inspiring. I am so honored to have him as a son.

Getting to diagnosisHealth Hats: Emeka welcomes you to speak with me about your journey together. But there must have been a transition from everyday parent-child tension and conflict to the kind of teamwork that seems like you have. Can you tell us something about that evolution?

Erika Blair: We must step back to when he was first diagnosed with schizophrenia and had his first onset, his first psychotic episode. It happened as a teenager. Even before that so, he was diagnosed with autism as a child. I always knew there were some social and sensory things. So, I took him to therapists, and I knew something because he was always very sensitive to light and sounds and very precocious when it came to academics. He was reading and doing exceptional math at two, like computing big numbers. And he was reading the chapter book Harry Potter by the time he was five. But socially, he would just get so sensorily overloaded. The schools would never do anything because he was so academically exceptional. But I knew there was something more than just academics. I knew there were some other things. He was diagnosed with, at the time, Asperger’s Syndrome, now with DSM V Asperger’s now falls under the autism spectrum disorder.

Help in schoolErika Blair: When he got to high school, he was always academically gifted and musically. He started playing cello at a young age, played in the youth symphony orchestra, and took high school-level classes by middle school. By the time he got to high school, with all the social pressures of high school, you’re taking all these college-level classes academically. He was taking calculus as a freshman, but the social aspect was just so overwhelming for him. And I think something happened because that social piece was always a challenge. I could never get an IEP even though I fought for the schools. They would never give him an IEP, even with Asperger’s. Because they felt nothing impacted him academically, he never got any help from the school system. But he did end up having a psychotic break. Cause I think it was the combination of the school pushing him academically and then trying to fit into social norms as an awkward teenager. It was tough.

First psychotic breakErika Blair: He had his first psychotic break. That was very devastating. It was scary because we didn’t know what was going on. It was scary for him. He was terrified. Scary for us as a family. And that’s when he was first hospitalized at about 16. It went on and off for about a year, in and out of the hospital with psychotic breaks. He didn’t know what was happening. At first, they just call it psychosis. And then, I guess, after a certain number of episodes, they gave the diagnosis of schizophrenia on top of the autism.

When we finally had a diagnosis, they kept trying different medicines. A lot of medications would not work. They tried everything. He would still have so many symptoms. It was scary for him. And then he would come home and have to go back to the hospital again, and he missed birthdays and holidays. As a parent, it was challenging to see your child go through that; he was such a wonderful child. To see a child suffering like that is the most heartbreaking thing. It was complicated. I was also pregnant at the time with twins, so it was hard on my pregnancy. But I just made an effort. I wanted to get him better and get him help. That was my focus. That’s all I wanted to do.

Finding integrated help for the familyErika Blair: So, I did research. I was looking at programs. I found Johns Hopkins’ Early Psychosis program, which Dr. Carolyn Howe ran. And I saw that early psychosis programs in my research provided the best outcome for those newly diagnosed with schizophrenia and psychosis.

Health Hats: Were those services for both him and you? Like parents and child?

Erika Blair: Yes. He was hospitalized, in and out, for a year. Different medicines did not work. They worked to a certain degree, but they did not stabilize him. So, we got him into the early psychosis program. He was released from the hospital and brought into the early psych program. The way the early psychosis programs work, it is not a hospital. It’s not an inpatient program. It’s like a more holistic approach. So, the patients come one day a week to meet with the psychiatrist for medication management. You also have a recovery coach, somebody that meets you. They would work with him in the field. So, they would meet him at school. And then, the employment support coach helped train him in vocational and professional skills. Then the parent component. Parents would come every other week. Overall, a more collaborative team approach to recovery. And the focus is on recovery. And that’s why you have a recovery coach, too. Once he got in that, he got on clozapine. After that, he never was hospitalized, knock on wood, again. It’s a very supportive approach. You’re looking at helping the person from every aspect to reach their full potential.

Goal-based careErika Blair: It’s goal-based working with the recovery coach to set his goals – what he wants to achieve for himself. He set where he sees himself in the next year. Where does he want to be in two years? You make strides towards those goals. And as I said, it’s collaborative. The parents are involved, so you do have the parent meetings, you’re involved. And I think that it’s a very successful program.

IEP finallyErika Blair: Let me take a step back. When he finally got the diagnosis, after all the years of fighting for IEP for him, he finally got an IEP for school.

Health Hats: What does IEP stand for?

Erika Blair: It’s called Individualized Educational Plans, supportive services for school. Keep in mind that he was already a sophomore. He was 16 when he had his breakdown. So, he missed the school year because he was in and out of the hospital. Because of that, they thought now this was impacting his education.

Finally, I fought the school system. I advocated for him getting him an IEP. Then he was able to get private placements for high school. It was a private high school called Hannah More in Baltimore. Shepherd Pratt Hospital System runs it. It was for students with IEPs who had emotional disturbance and autism. Emotional disturbance or autism. So, he was able to get support while he was in high school. And he did that for a few years.

Transitioning backErika Blair: At this point, he already had enough credits. Remember, he was always taking high school classes and only needed two high school credits to graduate at this point. He was about 17 at this time, and he was classified as a senior because he still needed two classes. But because he only needed two classes, they let him do dual enrollment. So, he was also enrolled at Baltimore City Community College. And they allowed him to take classes he didn’t have to pay for because of his IEP. The school system pays for everything.

Health Hats: That’s a great deal. One of my sons did that too. He did his senior high school year at the community college. So, he got dual credits.

Erika Blair: It saves a lot of money

A word from our sponsor, AbridgeNow a word about our sponsor, ABridge. Record your healthcare conversations with doctors and other clinicians with ABridge. Push the big pink button and record. Read the transcript or listen to clips when you get home. Check out the app at ABridge.com or download it on the Apple or Google play store. Let me know how it went.

Freaking out togetherHealth Hats: It seems like you were blessed in the relationship between you and your son. This whole experience was like freaky together as opposed to freaky apart. Is that true? Do I hear that right?

Erika Blair: Yeah. It was scary for both of us, but my goal as a parent was just to get him to recovery. Get him well, to get him help. And he was scared, so I wanted to help him. I needed to do everything I could to find resources. And all I did was reach out, research resources, and get him help. I have a technology background. I was working at FDA at the time, even though my focus has always been on medical technology and medical research. I’m big on looking medical research and seeing what is successful.

Questions for professional helpersHealth Hats: So, you were familiar with how to go out and learn more? Wow. I wanted to ensure that when I started talking with administrators, teachers, and doctors for this series, I came from a place of lived experience knowledge. As I start talking with doctors and people who administer inpatient and outpatient programs and community services, what do you think I should ask them about? I predict they’re going to talk about resources and staffing. I’m expecting, I don’t know, but that’s what I think. But what do you think I should be talking with them about that would interest you?

Do professionals have lived experience?Erika Blair: When you’re going out to the community with the lived experience? I think it’s essential to look at the staffing, having people who have had that lived experience who are providing professional services for newly diagnosed patients and providing that support. I think that’s asking because the doctor, certain doctors, and counselors have often not been to the experiences themselves. They’re trying to offer advice, but what better advice can you give somebody who’s newly going through this experience than somebody who’s been there themselves and has been through that? And so, I think that’s a good thing to ask. Do you have people on your team who are on your support team or staff team who have lived experience? That’s an important thing to ask.

Giving backErika Blair: And that’s what Emeka is doing now. Even before Shephard Pratt, when he was first diagnosed, he was hospitalized for a month at Shephard Pratt, an inpatient hospital in Baltimore. And then, as I said, he went to a high school that Shephard Pratt ran. Okay. He got graduated from college and has his degree. He’s now employed and working as a peer support specialist through Shephard Pratt. Oh, that’s great. He is currently on that team. As I said, he had an interdisciplinary team of psychiatrists, recovery coaches, and employment support who worked with him. He is now a part of that team, but being somebody who’s been through that experience, I think it just brings so much more insight for newly diagnosed patients. Yes. To see, okay, wow. I can set my goal. This is the outcome.

HopeErika Blair: There’s hope. It’s okay. Yes, there is light at the end of the tunnel. There is recovery because you’re at a moment when you’re first diagnosed, and you’re just feeling so helpless, and as a parent, you’re like, wow. I’m in so many parent groups for parents with like schizophrenia. They don’t see that there’s any hope or any outlet. They just see the moment now. They don’t think their kids can attend school, get jobs, and be productive citizens. But when you see when you’re, and it gives people hope, wow, this is possible. Yeah. So, that’s one thing I would ask if you had people who do have lived experience on the team.

Family on the teamHealth Hats: We had a family member who had profound depression, and one of our challenges was that we could not figure out how to be included on their team. Do you know what I mean? It was like their treatment; their support system was extra. Extra meaning not with us, okay.

Erika Blair: They didn’t include the family in the treatment plan. Okay.

Health Hats: That was hard because we didn’t know how to act. We wanted to support the program. And it sounds like you landed in a program where you were part of it.

Erika Blair: Yes. And that’s a big thing about the Early Psychosis clinic. The parent family support is a significant component. That is a component. Is that part of that collaborative team? Yeah. And again, I guess that’s something you, it’s an excellent question to ask too. Is the family part of that recovery team? Is that part of the team? That’s very important because then everybody’s on the same page. Everybody’s working together for the same goal.

Early interventionHealth Hats: What advice do you have for parents living with a young adult with psychosis or severe mental illness? What do you recommend?

Erika Blair: I recommend getting early intervention services, getting help, and getting support immediately as soon as possible.

Health Hats: So, like you smell something wrong rather than there’s some like a full-blown crisis.

Erika Blair: Yes. If you know that something’s wrong. Yeah. Get help. The way they call it early psychosis is just within the first year or two, I believe. So first few psychotic episodes. So, once you realize there is psychosis in play, and psychosis can occur with not just schizophrenia but people with profound depression, bipolar, and anxiety. Different things can manifest psychosis. But once you see the psychosis, just try to get the support that addresses the need for help with people with psychosis. Yeah. Every state in the United States has early psychosis programs that you could look up in your city and find out. In these programs, they do offer social groups too. Also, I think it is good for individuals to realize that they’re not alone.

Health Hats: Social groups. Like in person or virtual or both?

Erika Blair: Yeah. Partial. Virtual or in-person, or both. So, the early psychosis groups do offer some social skills groups. Emeka was always in programs that offered those services where he was with others with a severe mental illness. They would discuss different topics, do movie groups and outings, and go to the beach. During the pandemic, there was so much isolation, and everything shut down. That was hard for him because he was so used to going to these social groups in person. Yes. And that all closed down. That was a tough time. Because it was so much isolation, he found something called Students with Psychosis.

Students with PsychosisErika Blair: Students with Psychosis started as an in-person group. I think it was created at Penn State University. It was an international group for college students with psychosis at the time. It was initially called Students with Schizophrenia. Now we know psychosis not only has just a schizophrenia factor. There are so many different factors. It’s an umbrella like autism is the umbrella. So, they started online services with the pandemic. He found this group and joined its online services as a student leader. Cause he was in at the time in college. He was a college student. Then his college was all virtual. He was just going to college in person, and your whole world shuts suddenly. And for him, it was so important to have that social aspect. That’s always been part of his recovery because he needs to connect with people. So, it was tough cause your school is shut down, and all your classes are now virtual. You don’t have your social skills support. But he found the students with psychosis, and they had different programming types of groups every day of the week. They had open mics. They would have silent dance parties online, virtual, through various web platforms, either Google Meet or on, Zoom or Instagram lives. He found a whole tribe of people internationally whom he could connect to. They were also college students going through the struggle he was going through, the challenges he was going through. They realized they were not alone and could support each other. They can encourage each other. When midterms are up, they would have little sessions to help people, or when finals are up to support each other. Cause stress can trigger psychosis. So, all the time, when you’re in midterms and when you’re a college student, any added stress can be havoc on your mental health. So, it would just be this outlet of students going through different things, and they would come together and support each other. He loved that. He found himself, became a leader, and started as a student leader. Now he’s a secretary on the executive board, helping with planning the programming. I would say for individuals, finding groups like that is. Finding other individuals who are going through what you’re going through. The point is not to feel that you’re alone.

Positive support for parentsHealth Hats: Before we wrap up, what should we have discussed that we didn’t talk about?

Erika Blair: I’m trying to think. Where do parents turn? I guess that’s the thing. It’s so hard when you’re in this situation. You don’t know where to look. And as I said, that’s probably the most challenging thing. Yeah. For parents, I would say, first, finding support groups. There are Facebook groups. There’s NAMI that has groups, the National Association of Mental Illness. They have parent groups. One caveat is to be careful because you’ll see so many people, a lot of negative things, and there’s not a lot of hope or success stories. So that’ll bring you into a deeper hole.

Health Hats: That’s so smart. I agree. I have found that I’m involved with different groups of people with lived experience, but if it smells negative, I drop it. I’m pathologically optimistic, and I want to stay that way. I don’t want to mess with it.

Erika Blair: Yeah, especially the Facebook groups, you’ll find a lot of negativities where you don’t see any hope. You will hardly see any success stories, to be honest. And when you do, is that possible? Like they won’t.

Health Hats: I can see because people are suffering and they’re feeling they’re suffering and, that’s, but I yeah. Anyway. Okay. This is great. Hey, thank you very much. Thank you much.

Erika Blair: Bye.

ReflectionAs I reflect on this conversation with Erika, I’m struck by how proud she is of Emeka. She made such an effort to advocate for her son. She emphasized finding professionals with lived experience. She appreciated the integrated team. She values positive support and a sense of hope from other parents. The organizations I’ve worked with had leaders, in and out of the C-suite, clinicians, and peer recovery specialists with lived experience. I’ve spoken with others that struggle to build that kind of team, don’t have peer specialists, and may or may not have Advisory Panels of people with lived experience. In my own family, we’ve experienced mental illness. In one case, the institution’s licensed professionals provided little sense of hope. If one of the aides hadn’t told us privately to hang in there, I’m not sure what the results might have been. Another time we couldn’t become part of the team, but in fairness, our family member didn’t want us to. Parents, family, and caregivers have such a brutal row to hoe. What experience have you had? What wisdom can you share? Help me learn. Email me at danny@health-hats.com or go to my website, health-hats.com, and leave a comment.

Health Hats presents the next episode with Annie Schneider, an emerging adult with her story about major depression, followed by an episode with Matt Neil, a high school teacher. Watch/listen/read here next. Show notes with an article grade transcript and links can be found on my website health-hats.com/pod.

Annie SchneiderAnnie Schneider

I remember things were not right when I was 15, over ten years ago. I was not my best self in just a lot of ways. And I was struggling a lot. And I think my parents noticed it first. But eventually, I very quickly saw a lot of it. I was unfocused in school. I had a quick temper. I just had a lot going on that was not healthy. And, of course, many people, when we’re teenagers, you have mood swings and all kinds of ordinary things. We’re humans. We’re all humans. But I was not like other 15-year-olds. So, it turned into a lot. I had a lot of preoccupation and obsession with negative thoughts and negative thought patterns and was unfocused in school.

I found out from my mom later on. She, of course, didn’t tell me at the moment. Later on, I found out I just had a very glassed-over, glazed-over look on my face and in my eyes a lot of the time. I know it sounds cliche and kind of dumb, but I didn’t have much of my spirit. I was a shell of myself starting at 15, at least. That was when it became like a healthcare journey to recover and get well.

Matt NeilMatt Neil, High School History Teacher

I have a group of kids at our school called the Ambassadors running our new student program. About six years ago, our principal came to me and said, we have this population of students in our school that are being missed. I think they are lonely and dropped into our school community. Even though we’re all very well-meaning, they’re not supported. Will you do this? I said I would love to do that work. Our group takes a heart-centered approach. We just want to scoop these kids up and bring them on board. We have 78 current members. Every student in that group is teacher recommended for their ability to work with others, their kindness, their heart, and their willingness to improve the lives of others. When a new student comes in and gets a tour of the building, that’s a detailed tour and the opportunity to connect with people. They get somebody to eat lunch with, and they get a check-in at the end of the day. And those three points of contact, as opposed to no points of contact, before making the student feel welcomed into our school community. And then the goal is to have that student remain a contact and a first friend for those students in our building.

Podcast Outro 32:13I host, write, edit, engineer, and produce Health Hats, the Podcast. Kayla Nelson provides website and social media consultation and manages dissemination. Joey van Leeuwen supplies musical support, especially for the podcast intro and outro. I play bari sax on some episodes alone or with the Lechuga Fresca Latin Band. I’m grateful to you, who have the most critical roles as listeners, readers, and watchers. See the show notes, previous podcasts, and other resources through my website, www.health-hats.com, and YouTube channel. Please subscribe and contribute. If you like it, share it. See you around the block.

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Since AI dissemination exploded in 2022, I wanted to create my holiday letter using a variety of AI apps. May you all have adventures, rest, and inspiration. Love ya.

Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post.

Subscribe to Health Hats, the Podcast, on your favorite podcast player

Better to watch than listen

| Please support my blog and podcast. CONTRIBUTE HERE |

Episode NotesPrefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here

Contents with Time-Stamped Headingsto listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)

Proem

Podcast intro 00:43

Or as CHAT CPG translated as a Shakespearean sonnet 01:19

Boland van Leeuwen family 02:16

Health 02:43

Music, my life 02:54

Multimedia publishing 03:27

A word from our sponsor, Abridge a la ee cummings 04:00

Advocacy 04:36

Reflection 04:36

Podcast Outro 05:53

Please comment and ask questions

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram or Twitter to @healthhats

CreditsIntro and outro music by permission from Joey van Leeuwen, Drummer, Composer, Arranger

Photo by Rich Rieger

Photo by Diane Feil on Unsplash

Images by DALL.E

https://labs.openai.com/e/qK0AYWzbfbstxmhUIXpDUNXu/CUf17lDwAbvALkZwa9zuHi2M

https://labs.openai.com/e/sgimC5lsgZBWobq2ZIgFQD1i/aDAs9Tgmuk4yfhdAk0aBtkLh

https://labs.openai.com/e/v8iDSCzKlD13AVPPwjiAQ7v2/0YGebq0qdijNJTcxXHgQbggz

https://labs.openai.com/e/rrb28KfkM47oki5Ju9BQnwAN/kDDr4QrrDO1GnXH16T6QXSpk

Web and Social Media Coach Kayla Nelson @lifeoflesion

The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee.

Sponsored by Abridge

Inspired by and grateful to all of you

LinksI’ll be using two versions of Descript’s AI created overdubs of my voice, reading scripts created by CHAT CPG(2020), with images drawn by DALL.E, and my avatar done in Remini.

Related podcasts

2021 Holiday Letter: Trust

Engaging with Sax – Good as I Am – Merry Holidays

To subscribe go to https://health-hats.com/

The ShowProemMay the New Year surround you with empathy, equanimity, spirit, and gratitude. You’re hearing me speak in my own voice. Since AI dissemination exploded in 2022, I wanted to create the rest of my holiday letter using a variety of the AI apps out there

I’ll be using two versions of Descript’s AI created overdubs of my voice, reading scripts created by CHAT CPG(2020), with images drawn by DALL.E, and my avatar done in Remini.

Podcast introPhoto by Rich Reiger used with permission

Welcome to Health Hats, the Podcast I’m Danny van Leeuwen a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all of this.

Or as CHAT CPG translated as a Shakespearean sonnetPhoto by Diana Feil on Unsplash

I dropped the intro script into CHAT CPG asking for a Shakespearean sonnet version. Here’s the result. Notice mispronunciations.

Listen, dear reader, and you shall learn

Of the awesome circus that is healthcare

A world of endless questions, twists, and turns

Where realities are often hard to bear

We must adjust to life’s harsh realities

And navigate the maze of rules and regulations

We must learn to listen to all perspectives

And find ways to work together in collaboration

For in the world of healthcare, no one person

Can know all the answers or have all the solutions

We must listen and learn from one another

And work together to find the best resolutions

So let us listen and learn, my dear friends

And together we’ll weather this circus of healthcare

We’ll find the strength to adjust to life’s realities

And face whatever challenges may come our way

Boland van Leeuwen familyAnn & JoJo

The Boland van Leeuwen family, Ann, Danny and JoJo, managed to avoid Covid in 2022. Seems inevitable we’ll succumb, although we’re careful Happy New Year 2023. I traveled to Portugal, Spain, upstate New York, DC, Philadelphia and more, yet still infection free. I can’t stand

that AI voice. Here’s the second voice. My grandsons, Leon and Oscar continue to grow and retain their sweet selves.

HealthI’m grateful for the relative stability of my health this year. Managing to keep accomplishing everything I want. Planning for eye surgery in February to correct my deteriorating double vision.

Music, my lifeI’m playing music almost every day – approximately 320 out of 365 days, averaging 5.5 hours a week, but who’s counting. I love the Lechuga Fresca Latin Band. We play about once a month, between rehearsals and gigs. Leon’s playing piano as well. Here’s a couple of haikus created in CHAT CPG https://chat.openai.com/chat

Saxophonist’s breath

Blows life into melodies

Jazz improvisation

Spiraling melodies

Jazz sax improvisation

Soulfully soaring high

Multimedia publishingAs you probably know my podcast became written, audio and video, this year. This is blog #552, audio episode #187, and video #21. No wonder I don’t publish weekly anymore. Too much work! My most listened to episode was May 22nd Burnout, Healthy Habits, American College of Lifestyle Medicine (109 downloads) and most watched, Aug 20th Playing Baritone Saxophone with Disabilities. Can Be Done! 115 video views and 52 downloads

A word from our sponsor, Abridge a la ee cummingsRecord, record, big pink button pressed

Healthcare conversations now captured, expressed

With doctors and clinicians, oh how they drone

But with ABridge, I can listen and own

The transcript, a treasure trove of medical insights

Read it at home, my worries and frights

Alleviated, my knowledge now increased

Record, record, my healthcare piece by piece

No longer lost in the shuffle or the fray

Record, record, my healthcare at bay

With ABridge by my side, I am in control

Record, record, my healthcare whole

AdvocacyMy PCORI-related advocacy for 2022-23 centers on patient partnership and community-based research. According to CHAT CPG, patient partnership and community-based research is a collaborative approach to conducting research that involves meaningful engagement with patients and community members throughout the research process. This approach recognizes the valuable insights and experiences of patients and community members and incorporates their perspectives into the design and implementation of research studies. By involving patients and community members in the research process, researchers can ensure that their research is relevant and meaningful to the population being studied. Overall, patient partnership and community-based research can lead to more responsive, relevant, and impactful research that addresses the needs and concerns of patients and communities.

ReflectionWhat do you think? I had fun doing this. I’m not sure I’ll use the overdubbing much or the CHAT CPG, but I do like the images from DALL.E. As I become more comfortable with video this year, I’ll be ready to focus again on using music more. May you all have adventures, rest, and inspiration. Love ya.

Podcast OutroI host write, edit, engineer, and produce Health Hats, the Podcast. Kayla Nelson provides website and social media consultation and manages dissemination. Joey van Leeuwen supplies musical support, especially for the podcast intro and outro. I play bari sax on some episodes alone or with the Lechuga Fresca Latin Band. I’m grateful to you who have the most critical roles as listeners, readers, and watchers. See the show notes, previous podcasts, and other resources through my website, www.health-hats.com and my YouTube channel. Please subscribe and contribute. If you like it, share it. See you around the block

The post 2023 AI Holiday Letter, Oh My! first appeared on Danny van Leeuwen Health Hats.

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Episode #2: Emerging Adult living with Schizophrenia, finding help, using a toolbox to cope, giving back as peer specialist, leading with Students with Psychosis

Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post.

Subscribe to Health Hats, the Podcast, on your favorite podcast player

This episode is best watched on YouTube

| Please support my blog and podcast. CONTRIBUTE HERE |

Episode NotesPrefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here

Contents with Time-Stamped Headingsto listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)

Proem

Podcast intro 01:53

When did you realize health is fragile? 02:27

How did mental illness feel? 03:15

Loneliness 05:54

Get treatment sooner 06:52

My parents, my chosen family 07:26

More than medication – empathy 09:19

Re-entry, relearning 10:15

Finding the right medication 11:57

Hospital to school 12:40

Finding the right therapist 13:52

Remission, cured? 15:05

A word from our sponsor, Abridge 16:59

Never too early to ask for help 17:41

Keep your coping skills in your toolbox 20:10

I wish health professionals… 21:01

Need, capacity, staff, recovery coaches 22:05

Reciprocating as a peer specialist 23:32

Students with Psychosis 24:20

Reflection 28:19

Clip -Erika Blair, Emeka’s Mom 28:35

Nugget from the Mine – Ciel Coffee 29:58

Podcast Outro 32:02

Please comment and ask questions

at the comment section at the bottom of the show notes
on LinkedIn
via email
DM on Instagram, Twitter, Mastadon to @healthhats

CreditsMusic on intro and outro by permission from Joey van Leeuwen, Drummer, Composer, Arranger including Moe’s Blues for Reflection

Web and Social Media Coach, Dissemination Kayla Nelson @lifeoflesion

Intro photo of Vulture Couple by Rich Rieger used with permission

Photo by Nick Fewings on Unsplash

The views and opinions presented in this podcast and publication are solely my responsibility and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Danny van Leeuwen (Health Hats)

Sponsored by AbridgeInspired by and grateful to Jimmy Clare, Jason Stewart, Keith Scott

LinksJohns Hopkins BayviewStudents with PsychosisNuggets from the Mine (Unfunded Recommendation)Ciel Coffee Roasters

FOR COFFEE CONNOISSEURS. Nothing but the best. For me, the best reflects a coffee product of time, attention, and care from the Coffee Producer and the Coffee Roaster. Each bean is a reflection of its best potential

Related podcasts

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Reading the Room. Lessons from the Clowns. Take 2

Young Adults with Complex Conditions Transitioning from Pediatric to Adult Medical Care

Young Adults, Parents, alone, together. High school, college, professionals, parent. Plus physician, teacher

Series: Emerging Adults with Mental Illness

To subscribe go to https://health-hats.com/

The ShowPhoto by Diana Feil on Unsplash

Health Hats:I’ll tell you a funny story before we start. One of my first interviews was with this fellow who was a clown. Reading the Room. Lessons from the Clowns. Take 2. He worked at Boston Children’s Hospital with the kids. He talked about being a clown and the importance of being comfortable with failure. He would go into the rooms and had to read the room fast. What are the dynamics? How’s the kid feeling, and how are the parents feeling? He says you must be comfortable with half the time misreading the room. We had this great conversation, then hung up, and I realized I had never recorded. I had to call ‘him back and say, Let’s embrace failure. I forgot to record. So, we did it again. It was better.

Emeka Chima: Oh, thanks for sharing that. That’s an amazing story. That’s why it’s so important to be heard.

Health Hats: It is. With being heard, sometimes you hit the mark, and sometimes you don’t. People just don’t get it. Or you had an off day or whatever it was. I don’t know. I do know. I’m like you. I’m smart. I’m pretty. I’m charismatic. And I mess up.

Emeka Chima: I do that all the time, so don’t worry about that.

Health Hats: All right, let’s get rolling.

When did you realize health is fragile?Emeka Chima: Probably when I was diagnosed at an early age on the autism spectrum. I had a therapist who had MS, Multiple Sclerosis. That connection. Even you couldn’t see it from the outset. I realized that he was dealing with something deeper than you can see. So that was when I realized, wow, chronic illness is very fragile. It makes the human body and the human spirit fragile.

How did mental illness feel?Created by DALL.E

Health Hats: What was happening to you when you were younger, and you felt out of it and lost? It seems like there must have been a time when you suddenly felt, oh man, this might help me.

Emeka Chima: I was diagnosed at 15 and went to the inpatient psych ward. And that was probably the most traumatic experience of my life. After many trials and errors in and out of hospitals and trying so many medications, I found one that was the solution.

Health Hats: Did you feel dramatically different from the inside when you took that medication?

Emeka Chima: Very. And it showed on my outside too. I was experiencing fewer symptoms. And I could live through day-to-day life.

Health Hats: Okay. Your mom told me that you were a precocious young person. That you learned quickly and that when you were in school, it was boring. That sounded seriously annoying to me. So that must have been freaky to start the experience where you felt like you couldn’t live through life day-to-day. I don’t know what it feels like to have psychosis. What were you experiencing that you knew something was really messed up here?

Emeka Chima: In my junior year of high school, turning 16 in the fall semester, things started going haywire. I heard hearing voices and saw visual hallucinations. I could not understand what was happening to me. I didn’t know what psychosis was. I did not understand what was happening to me. All I knew was maybe I need help.

LonelinessHealth Hats: You heard voices, and at first, they were just voices? You were hearing something, and then you realized your mom’s not hearing them or other kids in school aren’t hearing them. They were voices to you. That’s disconcerting. That must have been lonely.

Emeka Chima: I felt alone probably 90% of the time. I knew I had my parents there. They were my best allies. But I don’t think they would ever know how I felt because they never dealt with schizophrenia. They never dealt with psychosis. I was the only, probably the only person I knew in the family that had this diagnosis. I didn’t think anyone understood, so I felt a bit isolated.

Get treatment soonerHealth Hats: Did you end up going to the hospital because you were a danger to yourself or other people or for a different reason?

Emeka Chima: I didn’t think I would cause any harm. I just know my parents saw that I was out of it, and they had to respond. When it comes to the first episode of psychosis, the earlier you get treatment, the better. Their mindset was my son needs treatment.

My parents, my chosen familyHealth Hats: What I’m hearing, and again, I’m putting words in your mouth, so correct me, is that you were fortunate that you had your parents. I would imagine that as a teenager, often with parents, it’s just usual teenage stuff. You’re breaking away from your family. And teenagers have stress with their parents. That’s just what being a teenager is about. And you were different. Am I right? That wasn’t one of your stressors.

Emeka Chima: Yeah, undoubtedly. I would say the contrary.

Health Hats: It sounds like your parents were, as you just said, your main allies in this. And how about other people? Did you feel like it was just them? Or did you feel like other people cared about you and knew something was wrong?

Emeka Chima: There were so many I would call chosen family. After my second psych stay, they weren’t supposed to be there for me. I got help at Johns Hopkins Bayview. It’s a hospital clinic based in downtown Baltimore. I think outside of my parents, they were my chosen family.

More than medication – empathyHealth Hats: Did you find a medication, and then that medication made a significant difference? I’m putting words in your mouth, so correct me. The medications seemed necessary, but not sufficient. You needed more than just medication. I don’t mean just medication. You needed more than medication. What else did you need?

Emeka Chima: I needed people to understand me and how to treat me as an individual rather than a person under this label. I needed that empathy from my caretakers.

Health Hats: Needed empathy.

Re-entry, relearningHealth Hats: Did you have to learn different habits? Did you have to learn how to process incoming stimuli? I’m trying to get a picture because I know so little.

Emeka Chima: I did have to change a lot. I had to relearn most basic motor skills, writing, handling myself, and walking properly. It was a learning, growing process.

Health Hats: Really?

Emeka Chima: Yeah. Because I was cooped up in the psych ward for so long. I had no outside interaction, no outdoor experience. I was pretty much solitary the whole time.

Health Hats: How did re-entry go? You said you were in inpatient facilities and had lost track of how to act. Let me ask, was that because of inactivity? Was that because you were on drugs that were suppressing things, and as you found the proper medication, you were then getting off the drugs that were so suppressive?

Finding the right medicationEmeka Chima: I saw a noticeable change as soon as I started taking the medicine they prescribed, like antipsychotics. I saw a change, but I wouldn’t call it a positive change. I had very vivid side effects, noticeable side effects

Health Hats: Of the antipsychotic medicines that you got at first until they found what it was that would work for you?

Emeka Chima: It wasn’t until I got discharged from that, the psych ward. That was when I first received the antipsychotic I needed.

Hospital to schoolHealth Hats: So, part of your rehab was everything, physical, mental, emotional. All of it. Wow. That’s a lot to go through. You were in trouble, and you were in the hospital. You got out of the hospital, and then you were in school. There must have been a space there.

Emeka Chima: There was a significant hiatus between coming out of the hospital and entering the school environment. The first hospital stay was over three weeks. Then my parents thought I shouldn’t go to school immediately. So, I tried outpatient school.

Health Hats: Did you do day rehab or something where you do day programs?

Emeka Chima: Day programs. And we were looking for the right therapist. I’ve encountered many in my journey.

Finding the right therapistHealth Hats: I don’t know what you were going through, but I know that the therapist I needed was a grief counselor. I had a son who was sick and dying, and it took three times. Do you know what I mean? Somebody would get recommended. I would go, and it didn’t work out. I went to another one. Very nice person, but I didn’t feel like I was getting anywhere. Then there was the third one, and we clicked. That was 20 years ago. And I still call him occasionally because he’s so good. But I understand it takes time. But you were fortunate that you could try different professionals. So, did you guys have good insurance so that there was a network of professionals, or were you plugged into a system open to finding the right person? How did that happen?

Emeka Chima: I was under my parent’s insurance until college. That’s how we’re pretty much able to afford all that healthcare.

Remission, cured?Health Hats: Let me bare my ignorance, okay? Do you feel like you’re in remission, that you’re cured of paranoid schizophrenia? Now with the correct medication, are you done with that, and you’re cured, or do you feel like it’s just something you must stay on top of?

Emeka Chima: Even with the medication, I still have breakthrough symptoms.

Health Hats: I can’t relate to it the way you do, but I have multiple sclerosis and am stable. But there are ups and downs. It’s progressive. It’s never going away. You must manage yourself. Again, I’m putting words in your mouth. You’re managing your energy levels, stress, nutrition, and the people you hang out with. Are all these things part of managing yourself?

Emeka Chima: Definitely, all these factors come into play. You can’t have one without the other.

A word from our sponsor, AbridgeNow a word about our sponsor, ABridge. Record, your healthcare conversations with doctors and other clinicians with ABridge. Push the big pink button and record. Read the transcript or listen to clips when you get home. Check out the app at ABridge.com. or download it on the Apple app store or Google play store. Let me know how it went.

Never too early to ask for helpHealth Hats: Is there something about your acute experience that you would advise other young people who are going through it or helping people, whether clinicians or non-clinicians? What’s your advice to them? What have you learned that you would share with people?

Emeka Chima: I would say it’s never too early to ask for help, either from a mentor, a care provider, or a loved one. The sooner, the better. That’s a big one.

Health Hats: People have a hard time asking for help. Now I’m relating my experience with a dying son, and people wanted to be helpful, and we had to work hard to find stuff for them to do, things we needed. People don’t know what to do. There’s the asking for help from people. Something like your parents, your teacher, your doctor, your whatever, your therapist, your mentor, and some people care about you and want to help but have no idea what that means. Is that your experience?

Emeka Chima: If you don’t ask the right person, you won’t get the needed response. I ask somebody that knows me well. As somebody more qualified to help, I wouldn’t ask—somebody with no familiarity.

Health Hats: So, your advice is to get help early. Err on the side of too early. What else?

Keep your coping skills in your toolboxEmeka Chima: Keep your coping skills in your toolbox. The more you use them, the more you overlearn them, and the more you can retain them.

Health Hats: What are some examples of coping skills you’ve learned?

Emeka Chima: One of my therapists gave me this coping skill called the breathing square. You take a deep breath and hold it in for three until you create a square. It’s a grounding technique, simple grounding.

Health Hats: Wow. I like that.

I wish health professionals…I’ll read the next question, but I don’t know if it’s the right question, so you can answer it however you like. What do you wish healthcare professionals knew or could offer young people who experience crises?

Emeka Chima: I wish healthcare professionals knew more about the underlying factors behind the illness.

Health Hats: Okay. For example?

Emeka Chima: Whether it is environmental, your surroundings, or biological, it runs in the family. I think that both of those applied to my own experience. I had a paternal grandfather who was diagnosed with bipolar disorder. Before then, I didn’t know anybody in my immediate family had a severe mental illness, which was very eye-opening.

Need, capacity, staff, recovery coaches 22:05Health Hats: When I talk to doctors or administrators of inpatient psych units, I hear them talk about needing more resources to meet demand. There’s not enough staff, not enough time. So, when I think about time-related issues, I think about the value of people who have lived experience and who may not have a degree or a license but are recovery coaches. What’s your experience with the help you’ve gotten with people with various backgrounds and credentials?

Emeka Chima: I’ve had a lot of experience. My support system comes from all different backgrounds. Not only where they’re from but what they’re specialized in.

Reciprocating as a peer specialistHealth Hats: Your mom told me you’re now a peer mentor for young people.

Emeka Chima: Yeah. Peer mentor. A peer counselor. You can call it peer recovery or peer specialist.

Health Hats: How’s that going?

Emeka Chima: Since I started this past July, I have enjoyed it. It’s something I could reciprocate what I’ve learned as a patient into the lives of all my clients.

Students with PsychosisHealth Hats: Two more questions. Tell me about Students with Psychosis. You mentioned that when we first met, and your mom talked about it.

Emeka Chima: Students with Psychosis is a non-profit organization formally known as Students with Schizophrenia. It has an international membership base and has been around since the year before the pandemic. It has virtual outreach, meaning it’s accepted members with lived experience from all over the world. I became interested in this when I was a college student. I reached out to them with an email, and they readily accepted me into the organization. And after that, I knew that was my place—a shout-out to the executive board since I am the executive board secretary.

Health Hats: Congratulations.

Emeka Chima: Thank you. It took a while to reach that point. It’s been one of the highest achievements I’ve ever had. I’m honored to be part of this organization.

Health Hats: When I went on the website, it looked like they had almost 24/7 services. Wherever you are, something is going on. It seems like people are in school, and of course, there’s just so much stress being in school with deadlines, social garbage, and just whatever family stuff. If you’re having either a crisis or smelling like maybe there’s a crisis coming, the site has something available. Am I reading that right?

Emeka Chima: Yes. No matter the time zone no matter the situation. So, it’s a personalized and individualized community, meaning that we accommodate any of your needs, and you come on your own time that needs no pressure to attend other meetings. But we like seeing new members join because that shows how prevalent the issue is worldwide.

Health Hats: This has been wonderful. I feel we will stay in touch, and I value that we’ve met. I’m an old guy, so I’m 70, and like to learn. And I’ve learned a lot from you, and I want to continue that.

Emeka Chima: Thank you. Of course. I would like love to share more with you. I’ll add you to my contact list as well.

Health Hats: Perfect. Thank you so much.

ReflectionI spent many years working in behavioral health as an administrator, leading performance improvement, quality management, and electronic health records implementation. I only provided direct care for a year as an aide in an inner-city inpatient, psychiatric ward. I decided to go to nursing school while working there. In my many behavioral health gigs, whenever I walked through a room with people with mental health and addiction illnesses, I felt overwhelming crippling pain. I had no filter. It freaked me out. So, instead I served those people that served patients. I never felt that crippling pain as a direct-care clinician with people who had medical problems and co-morbid behavioral challenges. I don’t know why. Our next episode will be with Erica Blair, Emeka’s mom.

Clip -Erika Blair, Emeka’s MomErika Blair

Erika Blair: It was scary for both of us, but my goal as a parent was just to get him recovered. Get him well, to get him help. And he was scared, so I wanted to help him. I needed to do everything I could to find resources. And all I did was reach out, find the resources, to research, and get him help. I’m in technology. I was working at FDA at the time. My focus has always been medical technology and medical research. I’m big on, looking at research, medical research and see what is successful.

Nugget from the Mine – Ciel CoffeeI drink coffee while I’m producing podcasts – water and coffee. Let me

introduce you to Jen Stone and Ciel Coffee Roasters. Jen wants to connect coffee drinkers with extraordinary cups of coffee. She joins coffee tasters with artisan coffee producers. I almost always drink good coffee, but Jen’s coffee is amazing, and it comes with a story. Last week I received a sampler of coffees. One package said Process: Honey. My wife worried that it was processed with honey. Jen replies with

The Honey process is when they take just the outer cherry skin off but leave all the cherry pulp on the seed and let it dry. It gets all sticky and the sugars naturally ferment and impart a slightly sweeter taste than if the coffee cherry and pulp had been removed completely and only the coffee bean (seed) dried out in the sun.

I receive no compensation to say this. In fact, Jen and I are podcasting and entrepreneurial buddies. Check out Ciel Coffee.

The post Lived Experience with Psychosis: Empathy, Chosen Family, Meds first appeared on Danny van Leeuwen Health Hats.

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We need our emerging adults healthy in spirit, mind, body. How can we learn more about their exploding mental illness? Start with people with lived experience.

Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post.

Subscribe to Health Hats, the Podcast, on your favorite podcast player

This episode is best watched on YouTube

| Please support my blog and podcast. CONTRIBUTE HERE |

Episode NotesPrefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here

Contents with Time-Stamped Headingsto listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)

Podcast intro

Four stories to set the stage

Behavioral health managed care 00:34

Adolescent advisory panel at Children’s Hospital 02:52

Integrated community approach 04:33

Lived experience on the Board of Directors 06:56

Engagement and partnerships with those with lived experience 10:41

Healthy emerging adults 11:13

Far from young adulthood myself 14:10

A word from our sponsor, Abridge 15:26

Introducing the podcast series 16:09

Introducing some guests 17:40

Emika Chima 18:03

Erika Blair 19:31

Annie Schneider 22:05

Nuggets from the mine -CURESZ.com 23:42

Podcast Outro 24:57

Please comment and ask questions

at the comment section at the bottom of the show notes
on LinkedIn
via email
DM on Instagram or Twitter to @healthhats

CreditsMusic by permission from Joey van Leeuwen, Drummer, Composer, Arranger

Web and Social Media Coach Kayla Nelson @lifeoflesion

Photo by Nick Fewings on Unsplash

Photo by Kat J on Unsplash

The views and opinions presented in this podcast and publication are solely my responsibility and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Danny van Leeuwen (Health Hats)

Sponsored by AbridgeInspired by and grateful to Bethany Yeiser, Robert Doherty, Jim Bulger, Chris Gordon, Greg Fredo, Sneha Dave, Betsy Neptune, Sue Donnelly

LinksNuggets from the MineCURESZ.org Comprehensive Understanding via Research and Education and Schizophrenia

Related podcastsYoung Adults with Complex Conditions Transitioning from Pediatric to Adult Medical Care

Young Adults, Parents, alone, together. High school, college, professionals, parent. Plus physician, teacher

Generation Patient. Hope for Young Adults Living to be Able

BUILD – Self-Confidence, Agency, Engagement in Young Adults

To subscribe go to https://health-hats.com/

The ShowPodcast introWelcome to Health Hats, the Podcast. I’m Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot of our very little. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all of this.

Four stories to set the stageBehavioral health managed careHealth Hats: About 30 years ago, I worked for a behavioral health managed care company. We put together a provider advisory panel and a member advisory panel. It was novel at that time, and we pulled these groups together to get direct feedback about our services, and one of the issues that both groups had in common was the onerous nature of preauthorization. So that meant when a member, a patient, went to a provider, a psychologist, a psychiatrist, or a social worker, they had to call a call center and get seven or ten visits authorized before treatment could start. They found this onerous, and we looked into it and realized it cost us quite a bit to staff the call centers to manage and deal with appeals and everything. And so, we experimented for six months with no pre-auth needed. You automatically got ten visits. Maybe it was seven, but something like that, seven or ten visits. And we found that there was worry about abuse, that people would take advantage of it, but that didn’t happen.

People were much more satisfied with the service. Our workflow was much more manageable. I learned a lot. I learned a lot about listening to people with lived experience, whether it’s the members’ or the providers lived experience with our services, and then making a change based on their feedback and seeing the results of it.

Adolescent advisory panel at Children’s HospitalI worked at the Boston Children’s Hospital. I led the Patient Family Experience Initiative. Where I learned the most was in the adolescent services. So, it’s a children’s hospital, and a large cohort of adolescents are still considered children. Still, very different. A 15-year-old is very different from a two-year-old. They had an adolescent advisory panel. And it was interesting in several ways. One was that the emerging adults and adolescents on the advisory panel had a lot to say about the services they received. They welcomed new and emerging adults to the service and helped them navigate. It was also interesting because people grow out of adolescence. They become adults. They’re no longer emerging, so part of the advisory panel’s process or function was to identify and mentor new, younger participants on the advisory panel.

Integrated community approachI worked as Director of Quality Management for an organization that provided behavioral health services. And managed the behavioral health services for an insurance company. And one of the measures that we had was outpatient follow-up within 30 days after an inpatient discharge. It was a quality measure. We were required to track as part of N C Q A, the National Committee for Quality Assurance that monitors health plans. And frankly, we stunk. I think it was something like 17% of inpatient discharges that were followed up within 30 days in outpatient.

And at first, we attempted to fix that on our own, but we weren’t successful. So, my boss, who was the executive director, pulled together a community initiative. This integrated community initiative included emergency departments, first responders, paramedics, EMTs, firefighters, police, social services, housing, and food banks. And began to work on this together, identified people who cycled through services heavy users of services, and did some coordinated case management. Our outpatient follow-up within 30 days after an inpatient discharge went from that 17% to something like 75%—quite a success. So that was pretty interesting to bring people together for integrated support of people with behavioral health crises.

Lived experience on the Board of DirectorsI also worked at an organization that supported about 23,000 people with disabilities. And they had people we supported on our board and every committee, operations committee, and governance committee. And I remember when I started working there, there was a gentleman who had some kind of paranoid schizophrenia and spoke in a stream of consciousness. Hard for me to understand. I went to my first board meeting, and he was on the board. And I was presenting some satisfaction survey results from people who were—cared for in our group homes. Residents and families were unhappy with those group homes. Our scores weren’t very good, and this gentleman started talking, and he spoke for a good three to five minutes, which sounded like a stream of consciousness, and I didn’t understand. But I noticed after about 30 seconds that nobody looked troubled or rolled their eyes. People seemed to be listening intently and when, and there was no interruption. And when this gentleman stopped, the medical director who was facilitating this board meeting stopped and said Well, you had a lot to say there. Why don’t we take a minute and just try to process what you said? And there was a minute of silence, and I’m thinking, what is happening here? I was startled, but after about 30 seconds, I started replaying what he said, and I could see some threads in what he said. And after that minute, I realized what we learned together was that this gentleman was talking about how hard it was when people were residents. Residents in our group homes said a staff person would leave, and there would be no notice that that person left. And all of a sudden, there’d be new, a new person or new people, and that it freaked people out, and it was such insight, and it was. We didn’t ask any questions in our survey about that. But when we took what this gentleman said and just let people know that so and so caretaker or caregiver was leaving, introduced to the new person in no time, meaning the next time we did a survey, our results were dramatically better.

Engagement and partnerships with those with lived experienceSo, these are examples of engagement and partnerships with people with lived experience who know the process and are included in that process, whether they have, whatever their abilities and challenges and communication styles.

Healthy emerging adultsWe as a society need so much, and we need our young people, and we need young people to be healthy. We need our young adults, our adolescents, our merging adults; however, we want to label that group of people between early and late preteen to mid-twenties. We need them. We need them because those of us that are old, I’m 70, and I’m at the end of my life. You have to be living in a total bubble not to see how critical and acute the mental health of our young people is. It’s been a problem for a long time, but now in this covid world, it’s even more so with a sort of warlike existence. Warlike meaning different from the norm that Covid has presented to us. The isolation, the lack of services, and the professionals and frontline workers who leave their jobs or have died during the pandemic. So, in this critical mental, social, emotional, and spiritual period, where brains undergo significant developmental changes, they have new neural pathways and behavioral patterns that will last into adulthood. There are a lot of people in need. The positive side is that adolescents are particularly receptive to the positive influences of youth development, social and emotional learning strategies, and behavioral modeling. But their developing brains, coupled with hormones, make them way more prone to depression and more likely to engage in risky behavior.

Far from young adulthood myselfI want to understand better what life is like now as an emerging adult. I can remember myself as an emerging adult. But that was a long time ago. And you know, I’m still a two-legged, cisgender white man of privilege, representing such a small slice. I wanted to start this series on young adults with mental illness to understand better what it feels like and what people are going through. How support people, what they’re trying to deal with, and what are the forces? And I want to start with people with lived experience. So, meaning young adults or people who were recently young adults, and then parents and teachers, and then professionals and community organizations and research.

A word from our sponsor, AbridgeNow a word about our sponsor, ABridge. Record your healthcare conversations with doctors and other clinicians with ABridge. Push the big pink button and record. Read the transcript or listen to clips when you get home. Check out the app at ABridge.com. Or download it on the Apple app store or Google play store. Let me know how it went.

Introducing the podcast seriesI started today’s conversation by telling you these stories about behavioral health, young adults lived experience and engagement, and public engagement to illustrate some of the formative experiences I’ve had in my career, highlight how important these areas are, and just increase my awareness and my sensitivity. In this podcast series, I will think about belonging, control, connection, trust, talk, a stable home, confidentiality, and access to supportive peers and adults. Access to professional help, different kinds of treatment, inpatient, outpatient, home, family, and school programs, and self-management. Tools that people have in their toolboxes.

Introducing some guestsLet’s listen to three clips from the series. Emeka Chima, a young man on the autism spectrum with paranoid schizophrenia, his mom, Erica Blair, and Annie Schneider, a young woman with severe depression. I’m grateful for their willingness, no eagerness to share their experience.

Emeka ChimaHealth Hats: I don’t know what it feels like to have psychosis. What did, what were you experiencing that you knew something was messed up here?

Emeka Chima: It all started in my junior year of high school. I was turning 16 in the fall semester. And that’s when things started going haywire. I was hearing voices, auditory voices, and I was seeing things like visual hallucinations, and I could not understand what was happening to me. I didn’t even know what psychosis was at the time. I did not understand what was happening to me. All I know is maybe I need help.

Health Hats: Okay. You heard voices, and at first, they were just voices. You were hearing something, and then you realized, well, your mom’s not hearing them or other, you know, kids in school aren’t hearing them. They were voices to you. That’s disconcerting. So, that must have been lonely.

Erika BlairErika Blair

Health Hats: You must be proud of your son.

Erika Blair: Very, very, very proud of him. He is not only a great help and support to our family and me, but he has so much to give to others, which is just very inspiring. I am so honored to have him as a son.

Health Hats: So, um, Emika welcomes you to speak with me about your journey together. Yes. But there, it must have been a transition that happened. From everyday parent-child tension and conflict to kind of teamwork, it seems like you have. Can you tell us something about that evolution?

Erika Blair: Well, I guess we must step back to when he was first diagnosed with schizophrenia, and he had his first onset, his first psychotic episode. It happened as a teenager, um, even before that. So, he was diagnosed with autism as a child. I always kind of knew there were some social and sensory things. Cause academically, they felt like nothing impacted him academically. I never got any help from the school system. But he did end up having a psychotic break. Cause I think it was the combination of the school pushing him academically. Then, trying to fit into the norm as a socially awkward teenager was very difficult. He had his first psychotic break. That was very devastating because we didn’t know what was going on. It was scary for him. He was terrified, scary for us as a family. That’s when he was first hospitalized. That came to his first hospitalization. Um, that went on. He was about 16 he was hospitalized. It was just. It was a very, very difficult time. I mean, as a parent, to see your child go through that, and he was such a wonderful child. To see a child suffering like that is the most heartbreaking thing. I was also pregnant at the time with twins, so it was hard on my pregnancy. It was just a very, very difficult time. But I just made an effort. I wanted to get him better and get him help, you know, that was my focus. That’s all I wanted to do.

Annie SchneiderAnnie Schneider

Annie Schneider: I can remember, when I was 15, over ten years ago, things were not right, and I was not my best self in many ways. I was struggling a lot. I think my parents noticed it in me first. But eventually, I very quickly saw a lot of it. I was unfocused in school. I had a quick temper. I just had a lot going on that was not healthy. And of course, you know, many people, when we’re teenagers, you have your mood swings and all kinds of normal things. We’re humans. We’re all humans. But I was not like other 15-year-olds. I had a lot of preoccupation and obsession with negative thoughts and negative thought patterns and was unfocused in school. My mom would report, and later on, I found out from my mom. She, of course, didn’t tell me at the moment. Later on, I found out I had a very glassed-over, glazed-over look on my face and in my eyes a lot of the time. I know it sounds cliche and kind of dumb, but I didn’t have much of my spirit. I was a shell of myself starting at 15. At least that was when it turned into a healthcare journey to recover and get well.

Health Hats: Alrighty then. Thanks for joining me for this series Introduction. Let’s see what we can learn in the circus of healthcare.

Nuggets from the mine -CURESZ.comBethany Yeiser of C U R E S Z. Comprehensive Understanding via Research and Education and Schizophrenia introduced me to Emika Chima and Emika introduced me to his mom, Erika Blair. CURESZ envisions a future where schizophrenia and related psychoses are widely accepted as neuro-biological brain conditions and can be prevented, treated, or cured with restoration of wellness and full functional recovery. The organization and website offers many resources, including treatment checklists, research information about treatment and a mentor network. The site provides guidance for clinicians, patients, and families, and people like me seeking to learn. I especially like the treatment checklist that includes setting treatment goals. The quarterly newsletter provides a variety of useful information for any stakeholder. Check it out. C U R E S Z.org.

Bethany Yeager

Podcast OutroI host, write, edit, engineer, and produce Health Hats, the Podcast. Kayla Nelson provides website and social media consultation and creates video trailers. Joey van Leeuwen supplies musical support, especially for the podcast intro and out. I play bari sax on some episodes alone or with the Lechuga Fresca Latin Band. I’m grateful to you, who have the most critical roles as listeners, readers, and watchers. See the show notes, previous podcasts, and other resources through my website, www.health-hats.com, and YouTube channel. Please subscribe and contribute. If you like it, share it. See around the block

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Where do veteran advocates point people new to advocacy for skills, resources, and research? What are trusted resources? 15 interviews from Healthe Voices 22.

Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post.

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Episode NotesPrefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here

Contents with Time-Stamped Headingsto listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)

Proem

Podcast intro 03:27

Sue Rericha 04:00

Sharnae Smith 04:33

Christine Von Raesfeld

Hetlena Johnson 05:48

Brooke Abbott 06:22

Bethany Yeiser 07:41

Michele Nadeem-Baker 08:59

Jenna Green 10:50

Kara Beck 12:15

A word from our sponsor, Abridge 12:47

Jasmin Pierre 13:30

Alexis Newman 14:02

Ryan Williams 14:43

Andrew Schorr 16:04

Howard Chang 17:45

Rachel Star Withers 17:48

Reflection 18:22

Nuggets from the mine 19:55

Podcast Outro 20:55

Please comment and ask questions

at the comment section at the bottom of the show notes
on LinkedIn
via email
YouTube channel
DM on Instagram or Twitter to @healthhats

CreditsIntro and outro music by permission from Joey van Leeuwen, Drummer, Composer, Arranger

Proem and Reflection music, Moe’s Blues, played by the Joey van Leeuwen Band

Photo by Shane Rounce on Unsplash

Web and Social Media Coach Kayla Nelson @lifeoflesion

Sponsored by Abridge

Inspired by and grateful to Estela Mata, Sharnae ‘Nae” Smith, Jim Snedden, Christine Von Raesfeld, Hetlena Johnson, Jason Crum, Jason Jepson, Brooke Abbott, Phyllisa DeRoze, Bethany Yaiser, Ken Taylor, Cindy Chmielewski, Jesus Guillen, Christopher Quibar, Stephanie Chuang, Michelle, Nadine Baker, Jenna Greene, Kara Beck, Jasmin Pierre, Sue Rericha, Alexis Newman, Ryan Williams, Sam Seavey, Andrew Shorr, Howard Chang, Rachel Star Withers

LinksRaw, unedited transcript of all responses to question #2

Healthe Voices website

Facebook

Bethany Yeiser CURESZ (Comprehensive Understanding via Research and Education in Schizophrenia). Mind Estranged: My Journey from Schizophrenia and Homelessness to Recovery Paperback – July 10, 2014

Lupus Foundation of America(LFA)

Hetlena Johnson’s thelupusliar.com@thejennagreen Instagram

Kara Beck @karabear_rny Instagram

Schizophernia medication TAAR1 agonistNAMI (National Association for Mental Illness)Books on Alzheimer’s by Ryan Williams

patient’s storyChronic Lymphocytic LeukemiaThe CLL SocietyCLL Women Strong Kicking Cancer in HeelsNational MS SocietyAndrew Schorr Patient Power

Nuggets from the MineKnowledge for Caregivers podcastRelated podcasts

Health is Fragile: 26 Stories

Recognizing Success in Advocacy: Stories on the Ride.

To subscribe go to https://health-hats.com/

The ShowProemWhenever I go to conferences, I prepare two questions to ask people I meet. I don’t always ask those questions, but I like having them in my pocket. It ties the event together; I learn something, and I listen more than I might have without. Adding the feature of recording more strongly connects me to the interviewees. So, a pleasure to interview twenty-six people in five-minute interviews, although challenging to produce.

Welcome to the third and final episodes created from the Healthe Voices 2022 Conference. I asked where do you point people new to advocacy for skills, resources, and research, to understand trusted sources better. See the previous question episodes in the show notes. People commonly responded with knowing yourself and your skills and not biting off more than you can chew. I include fifteen of the twenty-six responses to reduce redundancy. I asked the fourth question, have you heard of PCORI? As a Patient-Centered Outcomes Research Institute Board member, I wondered if anyone would include PCORI as a trusted source. I don’t include those responses as 22 of 26 had never heard of PCORI, and only two had any familiarity. Listen through the next fifteen minutes to hear my Nuggets from the Mine feature.

Podcast introWelcome to health hats, the podcast. I’m Danny van Leeuwen a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all of this.

Sue RerichaFirst, I probably want to find out why they got into advocacy. I’d encourage them to find a platform that they feel comfortable with. Don’t bite off more than they can chew. It’s easy to get overwhelmed. You want to do all the platforms, all the things. You want to do the politics and policies. The pharmaceutical side, the patient story side. Just pick what you’re most comfortable with and just focus on that for a while.

Sharnae SmithI usually point him to point them to the Lupus Foundation of America (LFA). It’s because they’re well known. They have more resources and connections than I do, so I usually make sure people get my contact information. You may just need somebody to talk to. You may not want to jump into meeting by reaching out to the LFA. You may just want somebody to be a friend. And so I give them my contact information.

Christine Von Raesfeld 04:53

Funny enough, I would point them to LinkedIn. Yeah. And that’s because I started out doing a lot of stuff on social media. Facebook was. I started doing Facebook Lives before Facebook Live was a real thing. But I found a lot of negativities, a lot of misinformation, disinformation, and all that stuff over time. And I find that LinkedIn is a good resource for me. These specific things, looking at what companies are working on and actual real facts, right? Are there, and so I tend to tell people, look, if you want to get into advocacy, you have to be on LinkedIn, not social media, but LinkedIn. And find out what these companies are working on, find out what’s out there in the future, and just gear your thoughts towards what’s there and the potential.

Hetlena JohnsonFirst, I would point them to, of course, I’m going to say me. My website, thelupusliar.com. The other main thing I would point them to is not to be reluctant to ask their medical provider or medical partner team for information. Don’t hesitate because they don’t know what you need unless you ask.

Brooke AbbottUsually at other advocates. Also, I’m big on facts and myth-busting. And as a historian who does research, I will sit with someone and show them how to research something properly. And how to find the foundation on which they want to advocate. I think it’s essential because when you first start advocating or when you first get diagnosed, and then you decide you want to advocate or you’re a caregiver who wants to advocate, you just want to help, or you just want to find the information yourself. Usually, your advocacy comes from wanting to know how to help yourself. So, I try to help them, and this might sound like a little bit like branding, but I try to help them find their foundation and their platform. What exactly do they want to do? And it could be broad, but they must figure that out first. And then, they can go and find all the resources they need, research the information, and decide if they want to be someone who gives people social tips. Suppose they want to give people information on research and development or legislative recommendations. Like you must know what your lane is. And refine that day-to-day.

Bethany YeiserI love learning more about new clinical trials. Medications are coming out. One is called a TAAR1 agonist. To be specific, it’s a different mechanism of action for antipsychotics. It’s in clinical trials, and other brand-new medications are coming through. So, I think that’s one of the most exciting advances in the schizophrenia field right now. But yeah, if I were to talk to a newbie advocate, I would tell them to share their story. Everybody has to choose if they want to keep it as something in the past or if they want to share it, and every person will make that choice. But as for the people who do want to share, I would encourage them to go for it. Contact your local university or your church, perhaps. Contact NAMI (National Association for Mental Illness) chapters or other nonprofit organizations. Make yourself available. If this is something you want to do, then create a PowerPoint. I have a PowerPoint presentation I probably used at least a hundred times. And I would also tell them that choosing to advocate is rewarding. And I’m so glad I’ve done it over the years.

Michele Nadeem-BakerI report for two places I consider the most. They have high credibility when it comes to cancers, which is patient power, an online resource patientpower.info, and the patient’s story. And that is also online. I know they’re very credible because I followed them. I’ve tested them. And the people who started them are also broadcast journalists and were trained to be credible, and at least we were, in telling the truth about things. But also, they do this very compassionately. I’ve been blessed to do this with them, with each of them, and for people with CLL Chronic Lymphocytic Leukemia. The CLL Society is an excellent resource as well. And that is leukemia that I live with. And they’re both very good as well as there are support groups online. You must test and see which one is for you. But when online, social media, for instance, for CLL patients, there’s one called the CLL Support Group. Easy to use, very intuitive. And also, I’ve started a woman’s community. And it’s called we have one for virtual meetings called CLL Women Strong. The community that’s on top of that we started is called Kicking Cancer in Heels. And we found that there are similarities between women, how they feel in their lives, and how they’re changed with any cancer diagnosis. And we, it’s about living like in quotes with cancer and living your best life with cancer. So, it’s everything around your cancer other than we certainly talk about it, but it’s like everything else that happens to you. And we have specialists on about that. We have frank conversations.

Jenna GreenI would tell them to check depending on what they want to advocate for primarily. Many of us have comorbidities as I do, but I primarily do my public policy volunteer work with the Multiple Sclerosis Society, the National MS Society. So, if it’s another person with MS, I tell them go to the MS Society website. There’s an advocacy section and even just something as simple as getting started to receive the email updates, and they’ll send you an email when there’s information or a legislative bill that they’re trying to get, gather support for, and you can just fill out your support with the click of a couple of buttons. You don’t have to go to the State House and testify to be an advocate. You can do it from your couch or from your bed, or from your hospital room. And that, for me, is fantastic, and most organizations have something like that now. So, I recommend going to your main organization and at least signing up for those emails or checking out what resources they have. Of course, Healthe Voices is a fabulous resource. I always recommend they have years of data and information. So the Healthevoices.com. And you can view past conferences as well as this conference that we are currently at, which is very exciting.

Kara BeckProbably within their own like community, other people who have been advocating I, that’s what I do. I watch other people who are advocating and take notes, I say, I like what they’re doing, or I see them having success with something. And so, if a new advocate would to ask, I would say Watch other people that you admire and try to do something similar or spin it for your own advocacy. You can always spin it and tailor it to what you are advocating for if you like what someone else is doing.

Jasmin PierreSo, the first thing that I found when I was researching was NAMI, the National Alliance of Mental Illness. And I honestly feel like that’s a really good place to start because there’s a lot of information about mental illness that people don’t know about. And a lot of people don’t even know that there’s probably a NAMI in your city that you can go to and find more resources. So that was one of the first times I felt like I was getting somewhere. So, I feel like I would tell a new advocate, like start there. It’s important to research.

Alexis NewmanTo other advocates? Just so that they don’t feel like they’re added by themselves. Because when you’re first new at something, you often can feel isolated, or you may not quite belong. So, I like to point them to other advocates within the realm that I’m advocating, which is the diabetes sector. So my platform is Instagram and also, and I’ve been on many different podcasts, and interviews. I’m also a registered dietician, so I write articles in a sense of reporters reach out to me. I give them the information and write articles to get it. And what’s your Instagram handle? @ladielex.

Ryan WilliamsI would honestly just try and point them to influencers, not in the same space as them, that are doing something big and significant. So, like following Mr. Beast or other big YouTubers and seeing what they do. And then, research how they do what they do, and then apply that to your own specific category that you want to focus on. So, if your category is rheumatoid arthritis, that’s cool, but you should see what is working for other people potentially, and then see if that inspires you to make content that would then resonate with those with rheumatoid arthritis. My platform of choice right now is Facebook groups. I absolutely love Facebook groups. I think they’re such an important tool to let anybody ask questions. It’s not a one-way street; it’s a two-way street for information. So, I run the Alzheimer’s and Dementia Support group on Facebook. I think it’s like the second or third largest, with 30,000 members. And so, you can join that. You can see how the group is run. It’s very hands-off. I hardly do anything on that group. I just help make sure it’s a safe place for communication to take place. And I let everybody else ask whatever questions they need.

Andrew SchorrI have a website, patientpower.info. Helps, and I recommend some others. What I try to do also is help them identify who the providers that are knowledgeable in what they have are. Because a key source, obviously, for health information for people is a knowledgeable healthcare team. Because you want to get well, you need treatment. Now there are lots of other issues. Affordability, living with quality of life, side effect management, a million things. But first, I try to help people identify who the doctors primarily, who are leaders for what they’ve got are, and ideally to connect with them even as a second opinion. So even if you live in a very rural area, remote area, can somehow you be in contact with the leaders for what you have so that your treatment plan, your diagnosis is accurate, and your treatment plan is on track with hopefully state-of-the-art medicine? Then the next step, of course, is affordability, which is a big thing now related to treatment is what are the resources to help you depending upon your personal financial situation. Are there foundations? Is there an advocacy group? if you’re in the clinical trial, is there assistance to be in the clinical trial? So, it varies, but I think it starts with who’s knowledgeable in treating you or advising your doctor on what treatment you should have.

Howard ChangWhen it’s tech, I don’t understand I go to my kids.

Rachel Star WithersI always say start with what you know If you’re good at writing blogging, writing books might be something that’s good for you. If you’re like just good at speaking and connecting with people, maybe you want to volunteer work and go to like different centers. If you’re someone who’s already, always on TikTok Instagram and you’re good with tech stuff and video might be your option. Too many people try and dive into the deep end and they get overwhelmed. Just trying to cover all the bases. Just start with what you know and branch out. Thank you.

ReflectionFun, eh? I love the passion and diversity of people with lived experience. I especially liked Ryan’s outside-your-bubble response to find good examples of advocacy in arenas in which you are unfamiliar. I resonate with Brooke’s comment about showing newbies how to research. Bethany’s suggestion about creating a PowerPoint for yourself worked for me. I have evolving resources as I keep clarifying what I’m about and what I offer. I think mission statement. Mine is learn with people on the journey toward best health. I appreciate that people offer themselves as resources. I often talk with newbies about trust – how to create trust in yourself. I mention creating, documenting, and feeding your network. Feeding a network means responding when asked to help and replying in social media. People are more likely to respond to you if you’ve responded to them. I introduce people to PCORI and the Society for Participatory Medicine. Howard’s statement, when it’s tech I go to my kids is spot on. For me, it’s my grandkids.

Nuggets from the mineI recommend following Knowledge for Caregivers podcast, practical tips from Kathy, a geriatric nurse, on how to help your aged loved one. Practical tips that I use with my own family to help navigate the caregiving role. Ten to fifteen minutes episodes range from activities of daily living (dental, showering, cooking, home modifications, driving), assisted living, power of attorney, conflict, pain management, case managers, and medical marijuana. Quite a broad spectrum. Practical, practical, practical. Check it out.

Podcast OutroI host write, edit, engineer, and produce Health Hats, the Podcast. Kayla Nelson provides website and social media consultation, and we both create video trailers. Joey van Leeuwen supplies musical support, especially for the podcast intro and out. I play bari sax on some episodes alone or with the Lechuga Fresca Latin Band. I’m grateful to you, who have the most critical roles as listeners, readers, and watchers. See the show notes, previous podcasts, and other resources through my website, www.health-hats.com and my YouTube channel. Please subscribe and contribute. If you like it, share it. See you around the block

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The odyssey of sustained community engagement at Cambridge Health Alliance with Janice John and Jamila Xible. Cross-pollination of expertise and employment.

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Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here

Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)

Proem.. 1

Introducing Jamila Xible and Janice John 01:28. 2

Communities served by CHA 04:57. 2

Most healthcare occurs upstream from hospitals and clinics 06:47. 3

Serving communities of immigrants 08:05. 3

Investing in community health workers 10:16. 4

Behavioral health community workers 13:09. 5

Hiring from within communities 15:31. 5

Overload of information accessing care 17:18. 6

Volunteer Health Advisors 21:03. 6

Nuances of culture 23:01. 7

Closing the gap for equitable care – a bit 25:04. 8

Outreach versus engagement 27:55. 8

Cultural humility 29:14. 8

Physician Assistant, Physician Associate 30:23. 9

Barometer for inclusion and engagement 32:59. 9

The complexities of community engagement 35:32. 10

Reflection 38:02 10

Please comment and ask questions

at the comment section at the bottom of the show notes
on LinkedIn
via email
DM on Instagram or Twitter to @healthhats

Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger

Web/social media coach, Kayla Nelson

Inspiration from Ellen Schultz, Kirsten Meisinger, Michele Whitt, Lisa Masinter, James Harrison, Russell Bennett, Ben Hamlin, Regina Greer-Smith, Tania Dutta, Uma Kotagal, Neely Williams

Sponsored by Abridge

Links Cambridge Health Alliance

CHA Facebook Page

CHA Healthy Now Blog

Link to cultural humility video https://www.youtube.com/watch?v=_Mbu8bvKb_U

https://lownhospitalsindex.org/hospital/cambridge-health-alliance/

https://www.challiance.org/community-health/volunteer-health-advisor-program

https://www.bhchp.org/. Boston Healthcare for the Homeless

Related podcasts and blogs Community engagement episodes on Health Hats, the Podcast

Community Engagement – Harmonizing to the Same Tune #150

Minister to Community Spirit

Systemic Disparities & Inequities in Maternal Health. Still?

About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this.

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The Show Proem Welcome to the eleventh episode in Health Hats’ community engagement series. I’m fascinated with communities that gather to solve a problem, their problem. I tune my ears to such communities and grab guests to join us and share. Less often, I discover institutions actively and sustainably (over years or decades) engaged with the communities they serve. What’s the difference – one time and sustained? One time is meaningful, significant, fulfilling, amazing. And hard to learn from and time-consuming to start. No rapid zero to 60 mph when you need it. Sustained engagement takes time to build an investment upfront and ongoing, but it’s available on demand. They’re different, with different results. One such institution sustaining community engagement is the Cambridge Health Alliance (CHA). Several episodes ago, we met Dr. Kirstin Meisinger, who recommended inviting Janice John and Jamila Xible to be our guests.

Introducing Jamila Xible and Janice John Health Hats: Jamila Xible, Director of Health Education and Access Programs at the Cambridge Health Alliance, is responsible for the oversight of several programs, including the Volunteer Health Advisors, Aging Wisely Everett, Senior Suicide Prevention, Women’s Health Network, and the Community Health Improvement Learning Institute, which regularly offers Community Health Worker training. Jamila holds a Master of Arts in Law and Diplomacy from Tufts University.

Janice John, PA, is a Medical Director at Cambridge Health Alliance, an experienced Community Health Clinician, Leader, and Educator with a passion for shaping our health care delivery system to improve the health of our communities. She’s a transformational leader, alliance builder, strategic thinker, creative problem solver, and collaborator.

Health Hats: Jamila and Janice, thank you for joining us today. I’m delighted. Could you guys introduce yourselves to our listeners and readers and tell us a bit of yourself and how you got to this place of investing in community engagement? Janice, you want to start.

Janice John: Sure. I’m Janice John. I am a PA at the Cambridge Health Alliance. PA physician assistant and I work in primary care at CHA and have been with the organization for about a decade. And worked in homeless health care for nearly a decade before that. Working really in community medicine has been the entire arc of my career but often really from the perspective of a clinical provider.

Health Hats: Okay. Jamila, tell us about yourself. Thank you.

Jamila Xible: My name is Jamila Xible. I work as a Director of Health Education and Access at the Cambridge Health Alliance. It’s my road to where I am is not straight. I had a lot of detours, but my undergrad in social work in Brazil in a time when Brazil was opening from a military dictatorship, and there was a lot of community work being done. And I was deeply involved, and that stopped a little bit when I came here. But as I aged and matured, I came back to this work.

Communities served by CHA Health Hats: I asked Janice and Jamila about the relationships with the communities CHA serves.

Janice John: I started leading our COVID outpatient clinic in March 2020. Our clinic took care of patients upstream from the emergency room and evaluated patients through the first couple of weeks. Early in the pandemic, it was apparent that the communities hit the hardest were immigrant communities. And that there were some significant differences in who came into our clinic, our outpatient clinic, who called in with symptoms, wanting a test, et cetera, et cetera, and who ended up in the ER and needed hospitalization. So, people most likely to come in for upstream care had differences within sub-communities. It wasn’t something that we could figure out with a clinical lens. We needed to understand from the perspective of the communities. And because of that, I reached out to our community health improvement team. Jamila is our rock star for community engagement. And we brainstormed to try to think of ways to figure this out. And, but it was really seeing the discrepancies and disparities really in our communities that made us try to figure out what we were not doing, not seeing, not understanding.

Most healthcare occurs upstream from hospitals and clinics 06:47 Health Hats: Real quick, say something briefly about upstream. What does that mean?

Janice John: The way I think about care is that most health doesn’t happen in the health system. Most of health happens far before anyone walks in the doors. What influences health is a series of things that happen in life in built community, et cetera, et cetera. And when COVID was emerging, we had a playbook from China that focused on hospitalization. A lot of the national conversation influenced by what was happening in Italy was around ventilators. There were entire working groups trying to figure out who would get ventilators. And our system said we are an outpatient and community care delivery system. This is not necessarily the proper roadmap. This is not where we need to focus all of our energy. And we need to be thinking about what we do before the hospital. We anticipated that the ERs would get filled, that the hospitals would get filled, and we wanted to build something upstream.

Serving communities of immigrants Jamila Xible: I feel like I’m part of a community of immigrants. And when I look at what happened at CHA, those are the folks that are suffering right now. I’m so grateful that I can be involved in this work with people like Janice. Like our clinical team, we work in an organization where folks have that sense of mission. I talk to people from other hospitals, they ask, what the physicians, the what? The PCP is the what? They come with you to the community. Yes, they do research. Yeah, they do. So, it’s an environment. Everybody seems to be in the same boat. This is our mission. We’re going to try to improve what is going on out there. So, my role has evolved. Basically, we do a lot of community health worker training, and then we work with the community health workers that we trained in the community to improve the health, where they live and work. It evolved under COVID. Health education became all about COVID, and again, really lucky that I could involve our clinical teams, bring them out, and have their full support trying to engage people in discussions on things that would make them safer. And many times, that discussion was just about mask-wearing, about social distancing, and handwashing, but then it evolved into the vaccine work that we’re doing right now. And this equity work that a robust team of people all around Massachusetts is very invested in doing this equity work, which is tedious at times because we are the folks in between people who need and resources. And many times, those resources don’t come in the package that we want them to come. And many times, people that need those resources have a hard time accessing that. And part of my job is knocking down those barriers to access, understanding what they are, and knocking them down.

Investing in community health workers Health Hats: Wow. There’s a lot in what you’re saying there. Let me pick on something. So you were talking about community health workers. Are the community health workers employed by community organizations, by CHA? Do they work pro bono? What’s the array of arrangements that there are with community health workers?

Jamila Xible: Right now, community health workers are an important, significant part of any health system around Massachusetts, perhaps about in the whole United States and in the world. You see them everywhere. We have employees that qualify under that umbrella of community health workers within the hospital walls and without and outside the hospital walls. So, for example, inside, we have patient navigators and patient resource coordinators. We have care partners. We have them tackling mental health. We have them connecting people to resources in many different, over 50 roles within a hospital wall. Pay them.

Health Hats: Oh goodness, many different roles. Wow.

Jamila Xible: Outside the hospital walls, we also have a number of community health workers. Our community health improvement department has about 70 people. Many of them in that role of health educators, patient navigators, you name it, but working outside, as Janice said, tackling social determinants of health. It’s not something that it’s there, and we can’t affect, but social determinants of health is the term commonly used. I don’t like that word determinants. I like to say social influencers because we can change them.

Health Hats: So, CHA has made an investment in this that’s impressive.

Jamila Xible: And Danny, just one thing, not CHA, the state, and it’s in the accountable care act. The role of community health workers is solid as part of the care team. This role of community health worker. So, it’s not only us, but it’s happening everywhere. Sorry.

Health Hats: No, I appreciate that. But in my limited experience, I would say there’s what’s required, and then there’s what is done and what’s the spirit behind all that.

Janice John: In our Instagram feed this morning. It was announced that CHA was named the number one hospital in Massachusetts for health equity and value by the Lown Institute.

Health Hats: Congratulations.

Behavioral health community workers Janice John: To your point, I think that there is what is required. But that’s a different thing for figuring out how to make a system work more effectively, leverage resources, and utilize resources to bring the most value to the population. And Jamila talked about all the various roles or types of community health workers in Cambridge Health Alliance. One good example just to pivot away from COVID for just a second is within our behavior integrated behavioral health. So, our system lost a really large number of psychiatrists and needed to pivot some resources to inpatient services because of the mental health crisis. And we. Yeah, we’re struggling as a system to provide care to all who need it right now, like every other system pertaining to behavioral health. But one of the things that we’ve been working on for several years now is this primary care behavioral health integrated mental health care. And one of the critical parts of that is our behavioral health care partners. So, these are unlicensed mental health team members who can provide a great number of services in conjunction with the rest of the behavioral health team overseen by the rest of the behavioral health team. Still, allowing for the prescribers, allowing for the therapist to take care of the patients most in need and not every, not necessarily every single patient, some patients do well with a care partner and brief interventions and that kind of thing. And when you think about it from a community perspective, in a population health perspective, mental health care behavioral health care can feel intimidating. And there are lots of different perspectives within our immigrant communities about accessing care, mental health care, behavioral health care. And so, having this role doesn’t just allow for a different allocation of resources, but it also can be much more accessible to patients who may feel a little bit intimidated by doing therapy or seeking psychiatric care.

Hiring from within communities Health Hats: I have two questions. Pick one. And one of them is that it sounds like you hire for within, meaning you hire from the communities you serve so that commute so that the health workers are coming from those communities. I’d be interested in that. And the other thing, just to get it out there, is that you’re talking about the differing approaches that communities have to Mental health, behavioral health care. And I’d be interested in hearing about the range. So why don’t you pick one of those, Janice, and then we’ll let Jamila talk about the other. Sure.

Janice John: So, as far as hiring from within our communities, I think that this is something that CHA for many years now has taken an institutional approach and has sought to hire from within the community, promote people from within our communities into leadership roles, and having more advanced roles. Take something like our medical assistants. Most of our medical assistants are bilingual, trilingual, are from our communities, and just have so much insight into the unique challenges that our communities, our teams, our patients face. But then, allowing them to potentially enter something like a care partner role or a leadership role or something like that. And with a lot of intentionality. And I think our HR department has done a pretty good job of this for quite some time.

Overload of information accessing care 17:18 Health Hats: Oh, that’s great. So, Jamila, what about the range of approaches? The approach is probably not the right word, but the range of how different communities will be ready for access, stigma, w what is the range that you feel like your communities offer in terms of opportunity and challenges in accessing mental health and behavioral health care?

Jamila Xible: Why don’t we talk about accessing anything at all? Many of the folks that we serve came to this country recently, and some came here like 30 years ago, but up to today, they still don’t speak English. So, understanding, like for you, Danny, to understand the healthcare system, it’s confusing. For me, I work in healthcare. When I look at my health insurance, what it covers, what it doesn’t, it’s very confusing. So now, imagine arriving in this land and having to learn everything. Language, places where you go shopping, what kind of products you buy, school, where your kids will go, vaccines you need for school or work, or whatever. So, all this stuff, it’s like an overload of information in folks’ minds. They don’t have time to think and do what it takes to access care and other resources. And what that means is understanding health insurance, especially for those that don’t have documentation of their immigration status in this country. So how what is accessible to them? For example, for folks that are coming from Brazil. In Brazil, if you get sick, you get the phone and call a doctor. And most likely, if you feel like my heart is aching, you will call a cardiologist. If you have stomach pain, you’re going to call a gastro person. Here we need to say no. There is a place you have to stop first, and that’s a primary care provider. You have to start there. That’s what opens the doors to everything, including mental health, cardiology. Then people usually ask me, but Jamila, how much does it cost if I just want to pay for a cardiologist? And it’s hard to explain that people won’t tell you that. People won’t tell you how much it costs until after you have that exam because they don’t know what they’re going to be, what your symptoms are, what kind of tests you’ll need. And so it’s tough for folks to understand that and plan. So, part of what we do as community health workers are explained and help folks navigate the system. And guess what, the emergency room is open for you. That’s not the optimal case if you don’t have a true emergency. So then making that distinction between what is urgent, what is an emergency, and what is just the regular maintenance. And then it comes that conversation on why it is so important to do that regular maintenance, but sometimes what I feel like across all the communities that we serve, people have so much more to deal with that they are functioning, they’re addressing emergencies. And if they don’t have an emergency medical situation, they will not go there. So, reaching out and bringing people in it’s it is what our goal is, our mission and our challenge,

Health Hats: Yes. Yes. Yes. I’m just I’m processing.

Volunteer Health Advisors Jamila Xible: The cool thing is, Danny, we have this awesome program at community health. It’s called the Volunteer Health Advisors Program. So, every year we recruit about 25 to 30 people from the communities we serve that reflect that community. And we train them as community health workers. And after we teach them, they volunteer with us for 48 hours. Then what they do is they help us connect with communities. Some work with churches, some work with municipalities or CB community-based organizations, and they help us do the work we do for a year. And then after that, that also works as a connection for them to find jobs as community health workers. It’s an awesome little program.

Janice John: And just to speak to that as a primary care clinician. I remember when this was pre-COVID, but I had a patient come into the office who was a new patient to CHA. She was new to the US and didn’t speak English yet. And was accompanied by someone, a VHA who I didn’t see the same language as her. So, it wasn’t acting as a translator at all. But there was enough cultural similarity that the patient could overcome her fears, partly just by having another woman there and having someone who could share some of her deepest fears with me as the provider. So, it also helped me as the provider to step back for a second and the kind of clinical space and think about the most important thing to this person at this moment in time. And that VHA was just so helpful in helping me prioritize and understanding, from the patient’s perspective, what was the most important? It was a beautiful moment. It’s a great program.

Nuances of culture Jamila Xible: And then you, let me just say, so when we go out there, and we tell folks you are safe here, you can come to CHA we’ll serve you. You come; you will find great doctors. You’ll find primary care providers. For me, it’s awesome to have Janice and her team, a lot of folks from different languages. So, I was talking about that idea of people coming into the hospital and meeting what we promise, which is a good provider. What Janice described right now was listening and trying to understand the culture and figure out how that affects treatment and that relationship.

Health Hats: Yeah. Yeah. Those nuances of culture are so huge.

Jamila Xible: And I feel like, in most traditional healthcare systems, you go to the doctor, and he has the power to tell you what to do. And many times, if the doctor comes from the same culture you come from, there’ll be more success even though you come from the same culture. The same culture doesn’t mean sameness. Many cultures, different individuals are multi-layered. But at CHA our doctors every day, our primary care providers every day, they see people very different from what they know. And I feel as an organization, that’s what separates us from many other healthcare systems in our area, in the country. I feel that our clinical team can do what Janice was saying right now, sit back and understand the needs and cultural factors that impact that care?

Health Hats: You’re doing a lot. It’s impressive. What do you think to take it to another level? What do you mean?

Closing the gap for equitable care – a bit Janice John: I can speak to this a little bit, and I have a degree in healthcare delivery science. I think that our systems are, when we think about this from a change management perspective and the incentives involved in the system culture involved in the system, all these different pieces we are nationally in the US far from where we need to be, to provide equitable quality affordable health care to communities. So, we’re just we’re pretty far. And I think at CHA, we’ve closed the gap a little bit. Maybe a little bit more than a little bit. But I think to continue moving in the right direction. We need to think about how we are paying for health nationally. What we define as value and through whose lens and even in thinking about how we train healthcare providers teams, et cetera, right? We teach people in a pretty traumatizing system. And so that trauma can impact trust and connection with patients, especially from vulnerable communities. And I think that certainly thinking about incentives and how healthcare is paid for and who’s part of that design of healthcare whose voices get heard and how care gets delivered. And also, how are we training people at a very basic level because we have to change the culture, and the culture of health care is pretty, pretty deep.

Health Hats: Oh yeah. Yeah. That would be an understatement. Wow.

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Outreach versus engagement Health Hats: So, what should we be talking about that? We haven’t we talked about? Jamila, do you want to start?

Jamila Xible: I think maybe not explicitly. I don’t think we talked about the importance for healthcare institutions to engage communities in the process of care. And by engage, I don’t mean outreach. Reach out. There’s this idea that we do outreach, and outreach is a one-way thing. You tell people what to do. Engaging is bringing the community into what you’re doing and helping them design the services that we are providing. I think it’s a very powerful thing. And Janice and I took this participatory research collaboration as a powerful example of how we can continue doing that. The other thing that. When I say again what Janice was talking about the training.

Cultural humility Jamila Xible: We, the medical profession, are very hierarchical, which is the importance of training. I’m a trainer in cultural humility. And I feel like that can be applied in many ways to improve.

Health Hats: A trainer in cultural humility. I love that.

Jamila Xible: Yes. So cultural humility. Yeah. It’s a whole thing. It’s a concept developed by a couple of doctors in California. And I was very lucky that I was trained by one of those doctors that developed the concept.

Health Hats: I’ll include something about cultural humility in the show notes. Next, Janice and I spoke about hierarchy in health delivery systems and the role of PAs, Physician Assistant, soon to be Physician Associate. What do PAs do?

Physician Assistant, Physician Associate Janice John: We deliver care. And, in a context so I, in addition to leading a clinical team, I also within the context of Cambridge Health Alliance, have been the chief PA for several years for primary care. And so, I’ve hired a team now of about 40 PAs. And many of them were born and raised in our communities, and the PA education was a much more accessible model to deliver care and not just culturally humble care, but culturally concordant care. And so, we have several Haitian PAs, and most of the greatest gaps in chronic disease management exist in our Haitian community. Several complex factors contribute to this. But the amount of trust between our community members and several of these Haitian Creole-speaking. But born and raised PAs from our communities, they’re able to bridge trust in a way that many of the rest of us may have a harder time doing. And so, I think that our profession, the profession of PA physician associates. What we have is our professional identity is as a team member. Teaming is 100% kind of our core identity. And I think that makes us ready to partner with patients, partner with communities. Partly because our training isn’t necessary to lead our training, it’s to partner with. And so, yes, hierarchy is prevalent in medicine. Unfortunately, it can be toxic and harmful at times and contribute to some of the traumatization and re-traumatization that exists both within teams and as it pertains to patient care. And it is also true that shifting our orientation to how we engage with patients moving from that hero model and to helper mode can be an incredible bridge.

Barometer for inclusion and engagement 32:59 Health Hats: As I’ve said before, my barometer for community engagement considers severely marginalized communities – whatever that means – like those without brick-and-mortar homes, those living in jails and prisons, those with rare diseases, and children with disabilities. How do lessons learned, principles, and initiatives apply to these communities? In episode #150, Kirsten Meisinger, also from Cambridge Health Alliance, spoke about the public health foundation of CHA. I took the opportunity to ask Janice about CHA’s engagement with the homeless community.

Janice John: I am not as connected to homeless care within Cambridge Health Alliance as I was when I was in Boston. Boston Healthcare for the Homeless is another incredible organization. And you should talk to team members from over there. They’re doing incredible work. And I think that the way they have approached care for, really quite a few decades at this point, is to design for the margins. And so, what they very much do, and they really have a lot figured out, right? So, they have consumer advisory boards. One of their consumer advisory board members is on their board. They do a lot within their delivery service delivery model to go to where the patients are. So, whether that is on a street and street medicine or to shelters drop-ins et cetera, their main hub is on Albany Street and Mass Ave in Boston, where just the greatest number of homeless patients at homeless people stay. There’s a shelter right behind. And then people, unfortunately, staying on the streets because that’s where we’re at right now with the closure of one of the biggest shelters in Boston. I think that the model of really going to where patients are and working to deliver care. I think that we talked about this a little bit before. What would we need to do? What we’re doing at CHA is if we could figure out how to transition more of our care to communities where community health workers are inviting clinical teams in that. I think that the payment model doesn’t align with that right now. And we’re a public system trying to stay afloat and continue to provide care. But I think that would be a total paradigm shift.

The complexities of community engagement Health Hats: Thank you. Jamila, I’ll give you the last word. If there were two things that you wanted listeners or readers to leave with from this conversation, what are those two?

Jamila Xible: The work that we do is complex. We’re working with people; we’re working with care; we are working with the healthcare industry. I feel like we’ve put a lot of thought into it, and unfortunately, we still don’t see the ideal situation, right? Ideally, everybody would be as healthy as possible in resources would not be a problem. And I feel like many people think that there’ll be one answer to what we do. But it’s not. It’s complex. It involves a lot of professionals. It involves teams, and it’s difficult because you include teams from different areas. It’s complicated not only time personalities. It’s complicated. I think that’s what I feel like for us in the field, and I talk about me. Some days, I feel like it’s one step forward and two behind, but yeah, I feel lucky that we in Massachusetts. I feel lucky that the communities we serve have had very progressive voices, not only within our house health healthcare system but also in the community itself. And that interaction is precious. And that’s what keeps bringing us to innovation and to change, to keep putting us in the right direction.

Health Hats: Thank you. Thank you both. This has been great. I appreciate it. Thank you so much. I have a feeling this is not the last time we’ll chat. Thank you for taking the time and sharing with us.

Jamila Xible: Yeah. Thank you, Danny.

Reflection I learned much today about the fabric of community engagement. I’m impressed with how Cambridge Health Alliance weaves the threads of community engagement with the warp of its public health mission. (Woven fabric lingo -warp and weave). I’d never heard of cultural humility. I love the two-way street of education and hiring for the diversity of community health workers and leaders. I’d expect a return on investment if the goal is community health and rapid response to crises. Do you know of other examples of sustained community engagement in healthcare research, delivery, entrepreneurship, or funding like CHA or PCORI? If you do, let me know and introduce me to someone who might be a guest on Health Hats, the Podcast. My next guest will be Talya Myron Schatz, a consultant, and researcher at the intersection of medicine and behavioral economics. We’ll speak about medical decision-making. Thanks for joining us. Onward.

The post Sustained Community Engagement-Rousing, Nimble, Complex #155 first appeared on Danny van Leeuwen Health Hats.

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Revisit 2019 travel to Spain with disabilities. A guest in other people’s lives. Differentiating between sound and noise. Heightening senses, expanding voice.

Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post.

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Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here

Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)

Proem.. 1

Taking stock 02:41. 1

A guest in other people’s lives 03:20. 1

Glad I’m not him 03:59. 2

Mobility enhancers rule! 05:25. 2

Gazing past our navels 08:04. 3

Differentiating sound and noise 10:02. 3

Reflection 11:17. 3

Please comments and ask questions

at the comment section at the bottom of the show notes
on LinkedIn
via email
DM on Instagram or Twitter to @healthhats

Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger

Web/social media coach, Kayla Nelson

Inspired by and grateful to Ann Boland, Linda and Mike DeRosa, Mary Lawler, Kate Higgins

Sponsored by Abridge

Links https://en.wikipedia.org/wiki/Camino_de_Santiago

Maria Xenidou LinkedIn

Impact Learning podcast

Ame Sanders LinkedIn

State of Inclusion website

State of Inclusion Podcast

The Podcasting Fellowship

Related podcasts and blogs

Camino de Santiago. Pilgrimage of sounds.

Days 6-12 Camino de Santiago. Rejuvenated, inspired, not yet peaked

About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this.

To subscribe go to https://health-hats.com/

Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines.

The Show Proem In May 2019 my wife, a couple of friends, and I went to Spain to hike the Camino de Santiago pilgrimage. Full disclosure, they hiked I road in taxis, in my electric wheelchair, and with canes. Now the same crew and two others are planning a trip in April 2022 to hike the Portugal Camino, God willing, and the creek don’t rise. I thought I’d reprise the three episodes associated with the Spain adventure over the next couple of months to get myself back in the groove. Although the six of us have known each other for more than 55 years, have traveled together in various assortments and conditions including hitchhiking, foreign and domestic, we are all close to or over 70 with various aches, pains, and disabilities. Two years after the Spain Camino I am less mobile and less cocky, but all still rarin’ to go. Plus, if not now, when? This episode, #19, was first aired May 3rd, 2019, six months into my now three-year podcasting journey. No sponsor yet. Less music. Again, still risk-taking and curious. Let’s drop in on this flash from the past.

Taking stock Hey there, glad you could join me. I’d like to pause and take stock of the past six months and look a bit to the future. We’re in the middle of a series with Young Adults with Complex Conditions Transitioning from Pediatric to Adult Medical Care. I’ve published 7 episodes in this series. I’m taking a brief break on the series and traveling to Spain. While we’re here together I’ll look back at the series, talk about Spain, and reflect on my patient/caregiver activism journey.

A guest in other people’s lives First, I cherish the opportunity to be part of intimate moments in people’s lives. In my career as a practicing nurse, I thought I had license to be nosey. I was a guest in other people’s lives. People are often amazing. They face complicated and frustrating challenges, jump hurdles, find help, and relieve boredom with humor. This inspires me. It fuels my fire. It gives me perspective. I’ve got it good. No, I’ve got it great. I’ll tell you a quick story here.

Glad I’m not him When I was an aide at the Detroit Rehabilitation Institute, I was working the evening shift with a man in his 30’s who had had a gunshot injury to the neck. He was quadriplegic (no abilities below the neck). He was headed down the hall learning to navigate his motorized wheelchair with his mouth stick. He couldn’t swivel his neck. Coming toward us was a man in his late 40’s who had had a severe stroke. He was hemiplegic (no function on his left side). He was learning to mobilize in his wheelchair using his right arm and leg. He was listing heavily to the side and visibly drooling. His 20 something wife dressed as for a dinner date was trailing behind looking thoroughly disgusted. My guy glanced over as he took his mouth from the joystick and said, “Glad I’m not him.” Gotta love perspective and appreciate what you do have.

Anyway, is this series we’ve heard from a young adult in high school and in college and a parent. I have 2 interviews completed with people in their 30’s, already through their transition, as well as other people in professional support roles for those young adults.

Mobility enhancers rule! OMG, I’m going to Spain for two weeks. I first went to Europe when I was 17. I hitchhiked from London to the Lake District, to Amsterdam, Paris, then Scandinavia. I went with my sister’s boyfriend who ditched me. It was my first experience I was alone for 2.5 months. I had a great time. I only spoke English and met lots of people – native and fellow travelers. People took me into their groups, their homes, their lives. I mostly slept outdoors or in hostels. My wife and friends are veteran hikers who annually hike for a week or two – the Grand Canyon, Brice Canyon, and more. This year it’s the Camino de Santiago pilgrimage in Spain. I don’t hike. I’ve always stayed behind. But, Spain? Forget it. I’m going. Ed, a colleague at the Agency for Healthcare Research and Quality, introduced me to a travel agent in Madrid that he and his disabled father used for the hike a couple of years ago. This agent took my wife’s hiking itinerary and booked us wheelchair-accessible rooms and a driver for me. I’m ecstatic. Mobility enhancers rule!! I will be recording the trip and will share it here in future episodes. Stay tuned.

Now a word about our sponsor, ABRIDGE.

Gazing past our navels Next, what am I doing with my life? My mission is to empower people as they journey toward best health. Best health = peak capacity. Getting the most out of your genetics, your circumstances, and your abilities. Such wide-open possibilities and opportunities. My primary vehicle is my presence: my varied experience, my words, and my heart. As an extroverted person of privilege, I seek and share what works for people and what doesn’t. I find tables of healthcare governance, design, operations, and learning to sit at and I give voice while working to open doors for others to join or replace me. Others with different experiences and skills. These past couple of years I’ve focused on informed decision-making along the health journey, communication and dissemination of research and learning, pain management and reducing opioid use, and transitions of care for people with complex and chronic conditions. I’ll continue these efforts as I am able. Recently, I’ve been inspired to home in on health equity and building the capacity to learn and grow (inspired by my new podcasting friends and colleagues, Ame Saunders of State of Inclusion fame and Maria Xenidou of Impact Learning fame. You can find links to their podcasts and work in the show notes). Neither of these inspirations are health care focused. There’s a lot, we in healthcare can learn from gazing past our navels.

Differentiating sound and noise This leads me, finally, to the experience of podcasting and learning the craft of podcasting. Learning podcasting from Seth Godin and Alex DiPalma’s Podcasting Fellowship has supported me as I fine tune contributions to you. I have entered and enriched a world-wide nurturing, challenging, informative network of citizen experts. I’m already full of myself. This community appreciates me, cheerleads for me, seeks my wisdom, and gently points out where I can grow and improve. As some of my abilities diminish, my senses and voice expand. I can better differentiate sound and noise. I can use sound to listen more deeply. Just as two canes and an electric wheelchair maximize my mobility, the podcasting journey strengthens my voice and my presence. Hang on!

Reflection Well, this 2019 episode holds up pretty well in spite of some setbacks and bumps in the road. The charge I felt from completing our part of the Spanish Camino continues to this day. Elation that I could do it! I am not my disability. My disability gives a tint to my spectacles (both definitions of spectacles: drama and vision). I better take my electric chair into the shop and make sure the nuts and bolts are tight. I no longer use canes, rather cane crutches. They take more space. I can’t walk as far and I can carry less. Adapting, adapting, adapting. Onward!

The post Sound and Noise. Senses and Voice. A Reprise. #19 & 154 first appeared on Danny van Leeuwen Health Hats.

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Coaching, critical to my success in life, art, politics, advocacy. Still need to do my own work & make choices. Listen to a session with one of my coaches, Jan Oldenburg.

Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post.

| Please support my podcast. CONTRIBUTE HERE |

Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here

Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)

Proem.. 1

The start of a business relationship 03:19. 2

Managing the swirl of me 05:50. 2

Coaching as a parent of a teen 07:21. 3

Advice, reflection, self-reflection, shades of grey 09:56. 3

First, build trust 11:02. 3

New position, new relationships, new levers 12:51. 4

Measurable outcomes of a strategic plan 16:24. 4

Changing roles at PCORI 17:02. 5

Vanilla management training. No nuts 20:08. 5

Clarifying personal mission, priorities, goals 24:26. 6

Staying in touch with, leveraging, advancing my constituency 26:27. 6

Capable of a delicate balance? 29:22. 7

Rare Disease as an inequity 30:15. 7

Keeping a pulse on Board effectiveness 32:23. 7

Leadership role on the Board 34:00. 8

The rest of my life 39:11. 9

Reflection 45:42. 10

Please comments and ask questions

at the comment section at the bottom of the show notes
on LinkedIn
via email
DM on Instagram or Twitter to @healthhats

Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger

Web/social media coach, Kayla Nelson

Rumours of Light image used by permission from Sue Heatherington @theWaterside Quiet Disruptors

Inspired by and grateful to: Christine Goertz, Sharon Levine, Nakela Cook, Mike Herndon, Tanisha Carino, Kara Ayers, Connie Hwang, Luc Pelletier, Caryl Carpenter, Dorothy Cucinelli, Peter Tetrault, Tim Sullivan, Cynthia Meyer

Sponsored by Abridge

Links Related podcasts and blogs

Legacy and Succession Planning for the Seasoned #141

Chiropractic – Operating at Peak Performance

Retirement – Micro-stepping with Mini-goals

About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this.

To subscribe go to https://health-hats.com/

Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines.

The Show Proem Want to be a fly on the wall of a year-end session with my professional coach, Jan Oldenburg? You can hear the good, the bad, and the ugly of my process to hone and strategize my professional and personal work. Why would I share a coaching session? Is this TMI (Too much information) too private? Does it make me vulnerable? In last week’s podcast, Matthew Hudson emphasized that you reveal something about yourself with the questions you ask, the problems you try to solve. Frankly, I am a bit anxious about sharing this, but you already know that I have little guile. I wear my life on my sleeve. I try not to say stuff I wouldn’t want on a billboard, but I’m not perfect at that. I reveal this session so you might sense how important coaching can be anytime in your life. Early in a career, as a leader, in health, art. I’ve been fortunate to have many coaches over the years, some paid, some pro-bono. Here are a few: Lynn Hubbard, Caryl Carpenter, Luc Pelletier, Dorothy Cuccinelli, Tim Sullivan, Peter Tetrault, and my current coaches, Jan Oldenburg, Jeff Harrington, and Kayla Nelson. As you’ll hear in the conversation with Jan, the output of coaching is up to me. I need to do the work. The choices are mine. This session is audio and video recorded with a transcript. You can find the video of this episode on YouTube with links on my website show notes. By the way, I thought this would be the least edited episode I’ve ever produced. True for the audio and video, not so much for the transcript.

The start of a business relationship Danny van Leeuwen: Jan Oldenburg, you know that I love you.

Jan Oldenburg: I love you, too, Danny.

Danny van Leeuwen: I appreciate our relationship as it’s developed over the years. At first, we were human curious, and then we started doing projects, sat on teams together, provided counsel to each other, and strategized in several different forums. It was always rich. When I was appointed to be on the PCORI Board of Governors, I was both full of myself enough and smart enough to know that I was the right person to be selected. I’m good at what I do. There was no way I would reach my potential without help and regular counsel. I immediately thought of you.

Jan Oldenburg: I’m honored.

Danny van Leeuwen: Thank you. So, we developed, and I insisted that you were very generous and excited and would have done this work pro bono for me, with me. I insisted that we have a business relationship. Part of that is because you got to walk the talk. We insist that people need to be paid for their work. And then there was another not so noble motivation: people with whom you have a business relationship will naturally be more responsive because they have a business relationship. I wanted that. So, we’ve met over fifteen months, pretty much monthly. And for me, I think the most important thing that’s happened is recognizing that I needed a filter between my brain and my mouth.

Jan Oldenburg: I have that problem, too, actually. So, I really understand that.

Managing the swirl of me Danny van Leeuwen: It’s good to say, okay, wait a minute, before I go off half-cocked, let’s just chew on this with somebody else, with Jan and clarify, clean it up, focus. Yeah. And so that’s good. And then I think it’s bringing all of the various threads that I’m involved in. So, just as I am not multiple sclerosis, I am not PCORI board. I am Danny van Leeuwen, and I have my fingers in many pies and am working on lining that stuff up with life pace. How much energy do I want to be putting out in total, in what buckets and what issues, and balancing all that? So, that’s my introduction. What I’d like to do here are two things. I would like to give you a chance to just talk about coaching and your feelings, approaches, and philosophy, and if you want to apply any of that, you can say anything – the good, bad, and the ugly about me is fine. And then let’s do a year in review.

Coaching as a parent of a teen Jan Oldenburg: Perfect. Coaching is an interesting role for me. I hope this won’t offend you, but I think this applies whether it’s coaching you or coaching my adult children. One of the things that has been a critical lesson for me in building a relationship with my adult children is figuring out that they don’t want me to fix their problems. They want me to be a sounding board. And whatever advice I am trying to give them, it’s not the point of the exercise. The point is about helping them figure out what they want to do, their instincts, and where they want to go. I bring that, frankly, hard-won lesson, and they will tell you; I still struggle with it. But that’s one of the things I’ve tried to bring into this relationship that this isn’t about it. If I’m doing the job well, it’s not about collaborating to solve the problem. It’s really about my being an echo and a witness and a sounding board for you to figure out where you want to go. And that’s not the easiest part of it for me, quite honestly. Cause I also like to solve the same kinds of problems. But it has been wonderful for me to be able to watch you. And frankly, your focus and resilience in approaching who and what Danny is at this moment in time. And his roles and, if anything, helping you to hone that a little bit more or tune it up, or think about the ways, what you really want to accomplish in each of these forums and how you can best accomplish that. And I hope that’s how it’s felt to you.

Advice, reflection, self-reflection, shades of grey Danny van Leeuwen: Yeah. It does. I think that being a reflection is important. So, hearing back, you do a lot of, ‘this is what I’m hearing you say,’ Sometimes it sounds right. And sometimes it doesn’t. I do like your opinions or advice, ‘if it were me, I would do, I might do this.’ I find that helpful. I, in no way, feel like that’s okay, then I’m going to do it. Cause I’m just not like that. I think we are people who are not black and white. We are people with many grays, and that gray is in and of itself gray has so many tones, and it’s where to try next.

First, build trust Danny van Leeuwen: I feel like another thing that happens is the follow-up of okay, what did we start with? We started with trust, building trust with my new colleagues. I was in a new role. I wasn’t a merit reviewer. I wasn’t chairing or co-chairing an advisory panel. I was a board member, and that is a very different seat, and it has different power, obligations, and leavers. And I felt like that setting the first task of building trust. I remember the first management job I ever had was as a nurse manager of an ICU. I was an ER nurse and paramedic, and the ICU Manager left. The nurses came to me and knew me because of the advanced cardiac life support course I set up and taught. They came to me and said, we want you to be our manager. I’m like, you guys are crazy. I’ve never been a manager. I never worked in the ICU. Like how silly can that be? And they said we’ll teach you the ICU and you’ll be a fine manager.

Jan Oldenburg: What a gift, actually.

Danny van Leeuwen: So, I went to my boss, the chief nurse, and told her what happened. She said, ‘put your hat in the ring.’ So, I did, and I got the job, and oh my God, it was different.

New position, new relationships, new levers Danny van Leeuwen: I’ll tell you two stories about how it was different. The first story was that within the first week, I realized that there were a lot of urinary tract infections amongst the staff. They weren’t taking a break to go to the toilet. There was one other male nurse, and the rest were females. And I was like, folks, we are smart people. We can figure out how to take breaks to go to the bathroom. I know we’re busy, but we are smart, and we can do this. And I went to my boss and said, I can’t believe this was my first management problem.

Jan Oldenburg: No kidding. So many layers of kind of irony about that, right.

Danny van Leeuwen: Yeah. And then the second was that I unilaterally ended visiting hours because it just made no sense to me that people, family members, could only come and see their family from seven to nine pm. Like where did that come from? But, being full of myself, I just did it, and, oh, they were so regretful that they had sponsored my elevation to this position. They thought I was nuts. And thankfully, the medical director was a hundred percent behind me. And my boss, who got lots of complaints, was very helpful strategizing, okay, now what are you going to do? How are you going to handle this? Do you want to back off and whatever? Which I didn’t. And we figured it out.

Jan Oldenburg: Question for you, Danny. The next time you were presented with something similar where you knew there would be staff and patient impact in opposite directions, perhaps it happened right away. Of course. So how did you handle it?

Danny van Leeuwen: I introduced it; I built the coalition. We figured out how to do it together. The next thing was that every physician had their own equipment. We had to maintain a stock of all sorts of brands of the same thing. When I got hired, the ICU was a loss leader. I said to the CEO, rather the chief nurse, which probably got me the job, that there is no way I am leading a loss leader unit. Forget it. It doesn’t have to be that way. So not only did we end up with one line of everything, but we also upgraded all the invasive technology, all the monitors, everything. And we broke even. That just took two years. Thankfully, I had a wonderful medical director because I couldn’t do it by myself, I couldn’t have done any of that, but anyway, I don’t know why we got down this thread.

Measurable outcomes of a strategic plan Danny van Leeuwen: Okay. Those were some pretty formidable accomplishments: elimination of urinary tract infections, visiting hours, equipment and monitors, breaking even like that. I don’t know if I ever have had those kinds of outcomes. Those are dramatic.

Jan Oldenburg: Those are dramatic. They’re clear, and they’re measurable. They are both human-centered and good for the organization. They hit all the chimes.

Changing roles at PCORI Danny van Leeuwen: If I think about this first year of PCORI, being on the Board, I don’t know that I can say those kinds of things. On the other hand, I feel like we started with trust, and I think part of the trust I was managing was that I was no longer a detail person in the role. I was not that much of an opinion person. But the role is different, and I’m not in operations. And even though I had relationships with many people at PCORI through my doing. I did all sorts of reviews because being Health Hats, they could check off all kinds of boxes with me and, and depending on what they needed, I’ve worked across the continuum of care, behavioral health, physical health, so I have expertise in a lot so that they could use me a lot. I met many people. And then, I led an advisory panel for four years, and then I was on another one for a year. I knew a lot of people, and I had relationships with those people, and I would communicate with them very occasionally. It’s not like I worked in the same office with them. We spoke monthly or every couple of months – quite a bit. Being on a board is really different. So, I felt like the first part of trust was making it clear that I appreciate the dilemma, the change, the difference. I think some of the stuff we talked about was that I had this long-standing, regular communication with X. That’s just not that appropriate, maybe with her boss, maybe at the director level. Then just being free to have calls with the chair or the executive director and saying, this is interesting or concerning me. Here’s what I would do left to my own devices. And I just want to make sure. Let’s talk about the right way to do this in my role on the Board, that’s supportive of you and the staff and not becoming an additional problem.

Vanilla management training. No nuts Jan Oldenburg: And I think we talked about that a lot. And I think it reflects on your story about going from being a staff nurse to being the manager. There are changes at each level along the way. So, I got a lot of management training when I first started, but I didn’t get training on how to be a middle manager,

Danny van Leeuwen: which is like night and day difference.

Jan Oldenburg: Even being a manager, it took a long time for me to start appreciating. That, that it wasn’t me getting the compliments. It was my staff getting the compliments, and I got the shit.

Danny van Leeuwen: And that’s the job. You have to own it.

Jan Oldenburg: And that’s the job. You have to figure out how to take pleasure from that. And then when you go from management at whatever level, to be on the Board, it’s the same kind of a sea change. And you have to do precisely those same kinds of thoughtful pondering about is this appropriate or not? How far, how deep can I go? How much of this is my role? And I think you did that thoughtfully and frankly enlisted the support—the rest of the Board, not just the leadership of the Board, but your colleagues.

Danny van Leeuwen: Yeah. I had a mentor on the Board who I made good use of. I’m thinking about when I had a C-suite job, which is very different from middle management, which has served me well here because, frankly, I didn’t do too well in it. I had excellent staff, and the team did outstanding work, so the function that I was leading was mature. But dealing with the culture of the C’s, the various chiefs; oh, my goodness, I was not that good. Eventually, I got canned, which also made me realize how different I see the Board job. I served the Board, which taught me how much work it is for staff to serve a Board. I do know that I am heard on these board meetings. We’ve talked about this. Like, how do you recognize being heard? I feel like it isn’t two or three meetings, sometimes one where something I said or commented on has a life. Now I think some of it had been worked on for quite a while, but I speculate it gave it a little more juice.

Now a word about our sponsor, ABRIDGE.

Clarifying personal mission, priorities, goals Jan Oldenburg: Well, Danny, one of the things I think I have been impressed with, as I have looked at, what you’ve been doing over the course of this time is that. You were very clear when you started about the set of goals you had for being on the Board, and you do a check-in with yourself very regularly. And with me on, how am I doing against those goals? How do I know if I’m doing enough, the right things, if they’re moving forward at an appropriate pace? I think you maintain that laser-like focus on what really matters about your role in this particular institution and what you want to make sure it happens as a result. And I strongly believe it’s one of the reasons you are effective and being heard.

Danny van Leeuwen: If I were to think about those things, it has to do with equity in the research process. Not so much research on equity because other people are going to take care of that. Yes. To me, it’s that there’s equity in the research process. I think it’s. Community partnerships with researchers and the caregiver focus. It isn’t just patients; it’s patients and caregivers—attention to caregivers needs to be there. There isn’t a constituency for caregivers. There is for providers like there is for patients.

Staying in touch with, leveraging, advancing my constituency Danny van Leeuwen: And then I think leveraging the existing PCORI resources, like the Ambassadors and the Advisory Panels, are diamonds for PCORI. And so, I attend as many of those as I can because I want them to know that somebody on the Board cares about what they’re doing is essential and a little tangent. So, one of the things that you and I talk about and appreciate in the coaching is that I’m really aware that I’m this person with limited mobility sitting in this tiny little eight-by-ten entryway of my flat, which has turned into my office. And I’m losing my train of thought. How, what are the levers, what do I have here? I feel like I have a friend who is completely chair bound has mostly mouth head neck, and she’s an engineer, and she designed her chair. She can do amazing stuff in her chair but take her out of the chair, and she’s a fish out of water. I don’t know if that’s an appropriate thing to say, but you get the meaning. I’m aware that I still have levers, and I feel like you have to use them. And one of them is an appreciation since I came up in PCORI as a patient-caregiver stakeholder. I know the benefit of the advisory panels and the ambassadors. And I think about how do I, we elevate that voice. I’m very fortunate; I think we’re very fortunate that the staff, the people who staff those panels, are pretty darn good at bringing the panels’ thoughts forward and incorporating that in their design thinking. They are focus groups. It’s very powerful. But I think, I don’t know, but I think the Board should just so appreciate this. I’m not sure they do.

Capable of a delicate balance? Jan Oldenburg: But, yeah, I think it’s also one of the interesting things for you that you’ve managed well, but it’s also part of the value that you bring, which is for, first of all, the delicate balance is attending those meetings without being intrusive on their process without having…

Danny van Leeuwen: Keeping my mouth shut.

Jan Oldenburg: Getting in the way of work that they’re doing. I have a great appreciation for how difficult that can be. But you do it well. And then, part of your role is to amplify what they are doing and amplify it in the context of board decision-making and strategy.

Rare Disease as an inequity Danny van Leeuwen: Exactly. An example from this week is the Rare Disease Advisory Panel. Somebody said, I think it was the co-chair, that rare disease is a community of disparity. I am not saying that right, but we tend to believe that there are disparities with people of color. There are disparities; inner city, homeless, rural, Native American when we think about the universe of disparities, so I don’t know the word for it. Communities of disparity are not the right words, but they want PCORI to be thinking about rare diseases as those kinds of communities. You and I have had conversations where I try to introduce that if we’re thinking about disparities and equity, my barometer is what are we doing with the homeless and the incarcerated populations? Like those are my barometers. I’m going to add rare diseases because of that discussion with the rare disease panel. I thought it was a brilliant frame.

Jan Oldenburg: Yes. And it’s certainly clear that there are communities that have even between rare diseases. They’re in disparities in how much attention they get in whether they have a celebrity that’s helping them, helping raise awareness. How much money is devoted to it, and how much pharma thinks they can profit from it? All of those things create unevenness is right,

Danny van Leeuwen: not a word, but right. Yeah. Whatever. It works. It might not pass in Scrabble, but it works.

Keeping a pulse on Board effectiveness Danny van Leeuwen: The other thing, the last area I would say is that I, when you and I first met, we talked about trust and then, where I put my energy and that, the requirement was that I am one board committee. I’m on three, and one of them is governance, which is not considered a sexy committee, and there are only three board members on it. And I think it’s a vital committee. And I know you agree because one of the projects we did together was a governance project, and we learned quite a bit in that project. And so, I marry my quality management background and think that the board needs a dashboard of themselves, of their work, and a dashboard that’s related to the national priorities. At this point, I am ready to do the work to figure it out, to be part of figuring it out. And I say that because I’m a board member. And I say that because this has been my life work. So, I’m good at it. If I wasn’t a board member, you could hire me to do this, and you would get what you want. But I’m a board member.

Leadership role on the Board Danny van Leeuwen: And so it’s I’m, I’m looking forward to a conversation scheduled next month with that I’m having with the board chair and co-chair, and I think they’re going around in there just having their periodic checking in which I appreciate that they’re doing. And, as you and I do, we think about what two things I want to accomplish in whatever meeting I’m prepping. And so this is one, and so everybody who’s listening, here’s the inside track on Danny’s coaching and thinking about PCORI and those of you who are in PCORI and thinking about this, you’re like, getting this view into Danny’s brain. Enjoy. I think about growing into more leadership roles on the PCORI Board, in a committee or workgroup, or whatever. I’m good at leading, love PCORI, and am committed to it. And I have the time. That’s a pretty nice offer.

Jan Oldenburg: Where would you want to take it?

Danny van Leeuwen: As when I’m first thinking about introducing myself. I have interests, which I try to be clear about. On the other hand, I tell the Board Chair and the Executive Director that I am their pawn. I’m a Renaissance person. I wear a lot of hats. I can do a lot of stuff. So, they should use me. That’s the most important thing. They should use me where they need me. Now, if they don’t know or want to think about it, I would like to be in a leadership role in the EDIC (the Engagement, Dissemination, and Implementation Committee) because that’s where my heart and soul are. That’s what I’m doing there. But the Board is rich with experience and skill and politic, so there’s not a wrong decision they can make. They have a lot of talent to use, and they know more about people’s experiences, time, and interests. I feel like my thing is just to be out there that I’m available. And here’s what I’m interested in. I can tell you have a thought here.

Jan Oldenburg: One of the challenges of being a Renaissance person is that you can do nearly anything. Part of it is choosing where you want to expend your precious energy. You’re correct to say I am your agent; use me as you will. That has been important to building trust. But you also are a limited resource. And so, balancing that with thinking about how you have the impact that you want in the areas you wish to is delicate, but I think you’ve established enough trust that you can be at least somewhat more forceful about the places where you think you’d be more effective or where your goals most converged with the organization’s goals.

Danny van Leeuwen: I’ll say two things to that. One of them is that if I were to have picked the three places to be, it would be the three places they put me. So that’s number one. So, kudos to the chair and co-chair. The second is that we’re in a place where I’m not sure where we’re going and how we’re reorganized. And what we’ll be like, permanent groups, what will be temporary workgroups. And I don’t know what they’re thinking about. I sit at the tables where strategy and governance come up. So, I have something to say about them, and I’m in touch, but I was going to say I’m not a decision-maker. But, I am. Anyway.

The rest of my life Danny van Leeuwen: I want to shift before we end. I want to shift because one of the things that I think is important about you and my relationship as coach and coachee is because we don’t just talk about my career life. I’m surprised isn’t the right word. I’m grateful that you pretty much every time we talk, you make sure that there are a few minutes about the rest of my life. I have some consulting gigs, my podcast, and play music. And I’m a person with disabilities who has work to do to stay mobile. That’s a lot. I appreciate that you bring that up. One of the things that we’ve accomplished this year is that even though I went through a period of way more disability for two and a half months, being a mess and not being able to play music just killed me. No, it didn’t just kill me; it was really annoying. I had some hopeless moments.

Jan Oldenburg: Yeah. It was heartbreaking.

Danny van Leeuwen: To think that I wasn’t going to be able to play anymore. Oh man, that was a bitter pill, but now I am playing more than ever and loving it. I’ve made some adjustments. I have declined some work. One of the things we’ve talked about is the alignment of everything, and especially the alignment of PCORI, podcasting, and my consulting gigs. As a result, I’m doing very little pro bono work because, hey, people are paying me. I’m buying the equipment I need and having more time to play music, which I enjoy. Plus, my rule has always been when my wife says she wants to do something, the answer is always, ‘yes, give me a minute. I’ll be with you.’ That’s really important, a key to my happiness.

Jan Oldenburg: I’m so glad that you brought this piece up, Danny, because one of the things that I have been, I have watched in awe I think this year is your personal resilience in the face of the challenges that your health has brought. And your continuing problem solving around how to do it, how to do it. And. Yeah, again, it comes in part with clarity of focus about what brings you joy and what you need to maintain that. But it’s also about the mindset that says I’ll take till I get this. And it’s, it’s part of the way that you are always positive. You’re always seeing a way through, or when you are feeling negative, you don’t let it be the permanent home you live in. But it’s also a mindset. That’s so much about possibilities and faith that there are possibilities, which then part help part link creates them. And that’s been a joy to watch and, and then honor to be a witness to because you are amazing.

Danny van Leeuwen: Thank you. This went longer than I expected, but this is our usual session length, everybody. This is usual. We book an hour; we take an hour. We don’t do it that often. As I said, we do monthly, and it feels like enough. And it helps me. Again, continue focus. Self-reflection is so critical. My podcast episode with Matthew Hudson is about the embedded researcher. Matt ends with, I asked him, what do you want to leave people with? And he ends with the importance of self-reflection and then supporting each other with our blind spots and strengths. It’s brilliant, just brilliant. I love that ending. Anyway, Happy New Year. I am so grateful to you and our personal and business relationship. I look forward to the possibilities. I gave you no opportunity to talk about yourself. Someday we’ll do that.

Jan Oldenburg: We’ll talk about legacy someday.

Danny van Leeuwen: Okay. Good. I would do that. All right. I’m delighted that I don’t think I need to edit this. I think I will just do a one-minute introduction and an ending and just put it out there. The funnest thing we’ll be thinking about is the title.

Jan Oldenburg: Oh yes, absolutely. And I’m dying to know what you end up with. So, it’s been my pleasure, Danny, not just this hour, but the time we spend together, it’s a high point of my month.

Danny van Leeuwen: All is well, great. Thank you so much.

Jan Oldenburg: Happy holidays to you, too.

Reflection What did you think? Was it curious, boring, enlightening, motivating? Frankly, I was a bit anxious about sharing this with my PCORI colleagues. But if not them, who? I am who I am. Huge thanks to Jan Oldenburg for going along for the ride. Happy holidays, dear listeners and readers. I appreciate you and your contributions. I’m grateful for your support. I look forward to another eventful year, although a little boredom would be great at this point. Onward.

The post Coaching for Peak Performance and Best Health – 2021 #153 first appeared on Danny van Leeuwen Health Hats.

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Embedded researcher, Matt Hudson. Partnerships, self-reflection, values, equity. Treat illness in service of community prosperity. An instruction manual.

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Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here

Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)

Proem.. 1

Introducing Matthew Hudson 00:41. 1

Introducing an embedded researcher 02:58. 2

Skillset of an embedded researcher – like a musician 05:31. 2

Embedded researchers in the community 06:57. 3

Employing, partnering with a researcher 09:10. 3

Permission versus commitment to act on research 13:26. 4

Implementation science. Just do it. 14:56. 5

Embedded researcher as steward 17:20. 5

Research in the context of care delivery. Individual health, organizational health. 18:18. 5

Workforce context 20:16. 6

Continually learning what works 24:40. 7

Music, again 31:05. 8

Do we see the questions through the same lenses? Buffing out the scratches 32:29. 8

Reveal something about yourself, not easy 36:39. 9

Self-reflection, values, and health equity 38:36. 10

Partnership: engage with blind spots and strengths 42:40. 10

Reflection 45:05 11

Please comments and ask questions

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Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger

Web/social media coach, Kayla Nelson

Rumours of Light image used by permission from Sue Heatherington @theWaterside Quiet Disruptors

Inspiration from and gratitude for Geri Baumblatt, Russell Bennett, Meghan Berman, Jennifer Canvasser, Kristin Carman, Tracy Carney, Gwen Darian, Karen Fortuna, Crispin Goytia-Vasquez, Alma McCormack, Alan Richmond, Brendaly Rodriquez, Beverly Rogers, Thomas Scheid, Lisa Stewart, Freddie White-Johnson, Neely Williams

Sponsored by Abridge

Links Learning Health Systems by Matthew Hudson, General orders for the embedded researcher: Moorings for a developing profession.

Patient-Centered Outcomes Research Institute Advisory Panel on Patient Engagement

PCORI Patient Engagement Toolkit

Related podcasts and blogs

Community Engagement – Harmonizing to the Same Tune #150

Continuously Learn What Works #148

Communities Advancing Equity through Shared Measurement

About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this.

To subscribe go to https://health-hats.com/

Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines.

The Show Proem These days, several interests swirl through my mind and heart: disparities and equity in healthcare, community-research partnerships, and continuous learning about health. Swirling sounds too pretty and neat. Perhaps it’s smearing through my mind and heart – murky and messy.

Introducing Matthew Hudson Recently, I read a commentary in the journal, Learning Health Systems by my friend and colleague, Matthew Hudson, entitled, “General orders for the embedded researcher: Moorings for a developing profession.” When I reconnected with Matt to congratulate him on his article and further explore the possibilities of embedded researcher, I realized that he thinks deeply about the whole smeared mess. I invited Matt to join us.

Matthew F. Hudson, Ph.D. M.P.H. has over twenty years of experience conducting and teaching research in health care and academic settings. He has served on multiple private and federal research review committees prioritizing patient-centered outcomes research and health care organization science. Matthew also partners with other stakeholders to develop hospital-based programs educating patients about research design. He and his colleagues’ efforts encourage patient engagement across the research continuum-from research question design to results dissemination.

Health Hats: Matthew, thank you so much for joining me. I appreciate it.

Matthew Hudson: I’m honored to be here.

Introducing an embedded researcher Health Hats: Would you please introduce yourself and include the journey you went through to write that excellent article about the embedded researcher.

Matthew Hudson: Sure. Sure. Again, thank you very much for the invitation. It’s always great to speak with you. For everybody else, my name is Matthew Hudson. You also call me Matt, and I currently work in a health system in the Southern portion of the United States. Professionally speaking, you could describe me as an embedded researcher. When I use the term embedded researcher, I describe someone possessing a research background. That’s typically someone with some sort of academic or research degree, but not always. But that person would immerse themselves in a health system or some type of clinical setting. And they do that to collaborate with patients and healthcare providers to investigate problems people face in actual world clinical practice. And I help them figure out ways to perform better in whatever way you would define better. But when you become embedded in a health system, you realize that the people you work with grew up and are from a different culture and neighborhood than you. And of course, I’m speaking literally, but I’m also speaking figuratively. Because to the latter, my education didn’t look the way that a doctor or nurse’s education looked. We learned different things, and we learned them in different ways. Some hospitals value that other skill set that I might bring, and they asked me to help figure out how to solve problems in assisting clinicians in figuring out how to provide care in what can be a real black box for both patients and providers. You can easily minimize or just plain forget the importance of maintaining the wellness of a community. You have to be equally invested in figuring out how to encourage prosperity in a community and not just treat illness for a small group of patients. So, I’ve been challenged to retain that perspective, being embedded in a health system, and there’s no instruction manual, at least not that I’ve found for how to work as an embedded researcher.

Skillset of an embedded researcher – like a musician Matthew Hudson: Now, there are a set of skills that people expect embedded researchers to know and to apply, but that’s not the same as teaching one how to be an embedded researcher. So, for example, if somebody asked you how to be a musician, I don’t know that you would say you have to understand how to apply major and minor scales. And you have to know how to execute a chord progression or plug in your guitar. Those are all competencies. They don’t tell you how to be a musician. And right or wrong, when you say the word musician, there’s an image that comes to mind. And it’s not entirely somebody playing a scale. It’s it comes a part of their way of being. It’s a vocation. It’s a way of living your life. And it seems to me that people assume that you can tell what a better researcher is by what they do. And what I would argue is you have to dig deeper to understand embedded research, and you have to think critically about who embedded researchers are. And there’s no instruction manual that I know of to teach someone how to be that. So, I just provided in that article some general thoughts about how to live imbedded research as a vocation, for better or for worse.

Embedded researchers in the community Health Hats: So, I love this idea. I had experienced when I worked at Boston Children’s that there was an embedded researcher in the nursing department. So, she was a nurse researcher who built a bridge between the patients, the clinicians, and the system and helped formulate the study question design and execute the study. And she was familiar with a lot of different cultures, both internally and externally. And I thought that a lot of what she did was bridge-building, bringing her expertise to bridge building. But as I’m thinking about one of the things I like about this is the. I just spin off into other things. Like the other day, I was talking to a friend who told me about one of her colleagues who was a first responder in his community. And he was a researcher. That was his vocation, and his volunteer work was as a first responder in his community. And so, he found himself developing into an embedded researcher in the first responder community. And I want to talk to him some more about that experience. But the point that I’ve been thinking about with your work, your writing, is how can a health system afford it and have it be part of their business plan to have an embedded researcher, and they see its value. And I sometimes wonder about how that can happen to communities. However, we might want to define the community.

Employing, partnering with a researcher Matthew Hudson: Let me back up and clarify one of your assumptions. And one can assume that quote health systems can afford to utilize an embedded researcher. Now, theoretically, that’s true, but practically speaking, that may not always be the case. There are many different models that one can use to quote embed researchers in clinical practice. It’s not uncommon that a clinical enterprise assumes no financial responsibility for bringing in an embedded researcher. The clinical enterprise, quote, merely provides a host environment where an embedded researcher works. But they may not necessarily support them in terms of a salary.

Health Hats: So, then they are grant-based. They’re generating income. So, our research through grants. How does that happen? What’s the business model?

Matthew Hudson: So how that happens can be in many ways. I’ll just throw out a couple. An embedded researcher has a home institution in an academic setting. And that their paycheck, however that paycheck is derived, comes from the university. And as part of the relationship between a university and a health system, a scholar from the academic institution may choose to be or solicited to be embedded in the clinical enterprise. The benefit for the clinical enterprise is that they now have an individual who has particular talents and skills that they can apply to clinical problems. The attraction for the scholar is that they now know that their research can be more readily translated into a usable product, where it’s not uncommon that scholars’ research interests lack a practical application.

Health Hats: Yes. Implementation science.

Matthew Hudson: I want to be very careful about that because I don’t want to disparage it. Because the academy provides generalizable truths about human behavior that are gravely advantageous for informing clinical practice. There are also instances where both the researcher and the clinical enterprise would benefit from a specific application of solving problems. And so that would be the attraction for an academician to engage a health system. There must be a financial investment in developing an infrastructure where an embedded researcher and the embedded research team can thrive. For example, you have to have the personnel to facilitate electronic health record data access. And you have to develop an enterprise that can educate the system, not just on the nuts and bolts of conducting research, but the philosophy of data collection and why data collection is essential to improving clinical practice. And simply shifting a misperception that research, however one thinks about it practically speaking, is merely nothing more than a book report. Simply seeing on a piece of paper is not the same as writing a book report. A significant amount of reflection and consideration is necessary to develop a tenable research project informing clinical practice. That can’t be a haphazard enterprise. The clinical enterprise must commit to improving practice, which can’t be done cheaply.

Permission versus commitment to act on research Health Hats: That’s very interesting the infrastructure part. I think the research question is vital to either the communities being served, or the patients being served, or the clinicians treating those communities or people. There’s the methodology. How is the research going to be done? What’s the science of it? There’s the recruitment of it and dissemination. And finally, what you’re saying that I appreciate is action. A reasonable likelihood that research will inform how people are doing the work together, making decisions, trying to get better.

Matthew Hudson: That there is a difference between permission and commitment.

Health Hats: Say more.

Matthew Hudson: One may permit research to occur in a system, go ahead and do it if you think you can. Whereas commitment is we value these insights, and we want to marshal resources and a culture amenable to generating this for a greater good. I would prefer to be in the latter circumstance where an organization has committed instead of simply permitting me to do research.

Implementation science. Just do it. Health Hats: Let me back up a step. In my seat on the Board of PCORI. One of the things that I try to bring up is that it’s odd that sometimes it takes work for researchers to be interested in implementing their findings. Sometimes we’re looking to recruit people who have researched to implement their findings. And that to me is a little bizarre, but I feel like you’re explaining that a little bit because that’s the commitment part.

Matthew Hudson: So, let me interrupt a second. Yeah, because I also want to clarify a statement that you made. The statement that I heard was that research is not typically interested in implementing their findings. Is that a fair paraphrase of what I heard? Okay. So, I would counter with the notion that there is an entire domain of scholarship called implementation science, which focuses on clarifying the steps that promote a systematic uptake of evidence and integration in the clinical practice. And so, there is a whole group of health service researchers who are infinitely committed to ensuring that information in evidence and interventions that are proven effective get rolled out in clinical practice. Now, digging deeper into your statement or your assumption, it would seem curious to know an effective intervention. Why is it that it’s so difficult to get it implemented? Does it relate to the organization’s affinity for the intervention relative to competing goals and demands? It’s a product of whether or how information gets diffused through a system. So simply having the truth doesn’t necessarily mean that other people know it or that it gets disseminated systematically to ensure everybody operates from the same premise.

Embedded researcher as steward Health Hats: Do you think the embedded researcher might have a leg up on that?

Matthew Hudson: I would say that an embedded researcher would be a prime steward of that.

Health Hats: Okay. I like that. Yes.

Matthew Hudson: Still simply because of their training and background. I alluded to that earlier. You correct me if I’m wrong because I know you are a nurse, and I will create a story. How were you trained as a nurse, right? Given such a diagnosis, you were taught to focus on diagnosing a particular patient, treating a specific patient. A specific care plan for a particular patient. But I will create a story that you weren’t readily trained in how the organization facilitated or impeded your ability to provide that care.

Health Hats: Oh.

Research in the context of care delivery. Individual health, organizational health. Matthew Hudson: And so, the way I grew up, one of my degrees has three foci. One is health care policy. What is the general what are the general policies or regulations? Both at a hospital’s level or a miso level facilitates optimal care. So, there’s health policy. Then there’s quality improvement. How do we get better at doing what we know we should be doing? Then the third is understanding medical decision-making. What are the social, psychological factors that mediate either a patient or providers’ predisposition to elect a care plan and stay true to that care plan? So, I have a background in thinking about all of these contextual factors relative to what you were trained to do to figure out the care plan and diagnosis. And someone like me is trained to think more critically about the influences and the context that allows the patient and provider to capitalize on the treatment plan. Does that make sense?

Health Hats: It makes sense. I’ve been a nurse for almost 50 years now. And I would say that my first, 15, 20 years was what you described, the art and science of individual care. And then, I discovered organizations, and it was understanding that I was operating in a context. And I was becoming more interested in organizational health. So, leadership and infrastructure and culture, and how that set a stage for individual care. Which is, I think, what you’re describing.

Workforce context Matthew Hudson: Right now, understand that at least my comments had been focused on what happens in this black box. We’ve observed that when an individual returns to a health system for the same condition, that is quite common due to nothing within the health system. The reason that they’re producing is because of factors that operate outside of the health system. And so, if a health system fails to consider or help address the factors that portend somebody needing the health system, they will set up a revolving door such that a person can never prosper. They will continually be exposed to illnesses that require treatment within the health system. Now that is tragic in and of itself, but why is it essential in this day and age? The reason is that we have a health care workforce that is aging and getting closer to retirement. So we have fewer health providers, generally speaking, to address a population of individuals that will increasingly require health or health care. So we are putting more pressure on the individuals providing care now more than ever. Those individuals providing care are, in fact, individuals. They are real people who have to endure a work environment’s stress. And so the health enterprise is becoming very concerned with workforce burnout, right? Yeah,

Health Hats: Especially with Covid now

Matthew Hudson: Without question, that’s an unforeseen circumstance that’s exacerbated the current concern regarding the proportion of patients that have to be cared for relative to the provider workforce. And ultimately, we’re concerned that the stress of the health enterprise will not be able to provide patients with the optimal patient-centered care they need. So, we have to start thinking critically about two things: maintaining people’s health and wellness outside of this black box. Secondly, we need to think critically about improving the workforce health of people within this black box, which requires a critical reflection on the organization-centric factors that mediate one’s capacity to execute their sacred charge of providing patient care. Typically, people within a health system have not been exposed to the education necessary to develop research around those topics. Because they just grew up thinking critically about the biomedical paradigm. They haven’t used these organizational frameworks to think through how that would influence care. And again, coming full circle, that is why some health systems reflect on their workforce and needs. And they say we don’t have people trained in domains of, for example, the value of clinical science, implementation science, or comparative effectiveness research. And we have to solicit individuals outside of our clinical environs with the hopes that they would be interested in lending their expertise to these clinical problems that we face.

Continually learning what works Health Hats: So, this is an excellent segue into this other concern that, I say other, but it just flows right into it. I’m interested in learning what works and that to me, learning what works is a continual process. And so, whether that’s on an individual level and so whether the individual is a patient or an employee, or a caregiver or it’s the systems trying to implement the findings of research and see does it work? And in what circumstances does it work in real life? And I’ve been thinking about this continual learning part. One of the things about research that I stumbled on is a beginning and an end to the research project. And it was for a particular group of people with specific circumstances and a specific setting, but we never really continue to learn. And I’ve tried to bring this up in many different forums over 20 years, and I’ve been pretty completely ineffective. And so, I’ve realized that I have this idea, and either the idea is not well-formed, or the idea is doesn’t fit into the black boxes that we’ve been talking about. So, I wonder what you think about this idea of continual learning and growing this body of evidence.

Matthew Hudson: So, let me take a shot at this. This is me, again, creating a story. The reason that you have been exposed to research projects that seem to have a beginning, middle, and end maybe because there wasn’t a sufficient consideration of the generalizable truth that we could extract from the specific line of inquiry. So, for example, let’s take something easy, smoking cessation, right? Let’s say that the trick is, or the not trick. I shouldn’t say that the aspiration is to reduce the number of individuals smoking. If you design a study specifically focused on that, you can either observe that you had an impact or you didn’t have an impact. And if your interest is myopic, that is, if your interest is exclusively constrained to whether somebody smokes or not, there’s a beginning, middle, and end to that, in theory. But if you’re trying to understand the generalizable truth about encouraging preventive behavior in the absence of illness, or if you’re trying to understand the steps toward adopting a healthy behavior. You’re trying to understand that, then the research will still live because once you solve the problem of smoking, there’s always another problem around the corner that you could apply these generalizable truths to. So, in the same way, we had to try to figure out how to encourage people to obtain a polio vaccination. We were struggling with the notion that there’s a way to reduce the evidence of polio. We have this, why is it that people do not avail themselves of the shot? And there are a couple of smart people who gleaned the generalizable truth that it has something to do with perceptions related to benefits of treatment, barriers of treatment, the susceptibility of disease, and the severity of a disease that informed this social, psychological wall called the health belief model. Now that health belief model could be applied and has been applied to mountains of clinical and population health and public health challenges. In that sense, the research has lived on. There is no end to it because they tried to understand the generalizable truth about human behavior in studying polio. Catch onto that. If you can hook yourself to that, regardless of the specific research question, your research will live on because no matter how successful we are in solving problems, there will always be another problem that will emerge. Whether it’s acquired immunity deficiency syndrome, COVID, or anything, any other tragedy that befalls our population. Then the idea is, and the trick is to glean the generalizable from the research that we undertake.

Health Hats: I appreciate that. Let’s take that story a little farther and say that there’s this generalizable truth, and does it work with HIV? Does it work with COVID? Does it work with measles? Continuing to ask that question and then building the pool of experience. Whether it’s systemic like vaccination or whether it’s individually related to smoking, did what we learned about smoking does that work on the reservation? Does that work with Gen X? Sure. It’s like continuing that.

Music, again Matthew Hudson: If I could extend this metaphor, there is a difference between learning a song and learning music. If you learn a song, you can only play that song, and you might get tired of that song. If you understand the musical theory that motivates that song, you can rearrange those notes to create a different composition. Consequently, the number of songs would be infinite. And so, the idea is to extract information that can be infinitely useful in an array of health service quandaries.

Now a word about our sponsor, ABRIDGE.

Do we see the questions through the same lenses? Buffing out the scratches Health Hats: Do you think I’m asking an important question, or am I asking the wrong question, or are there more questions?

Matthew Hudson: Oh, geez. I have a visceral reaction to that because it minimizes your insight. Okay. I want to start with the premise that the question you pose to yourself is important. That I accepted on its face, and it requires no justification or validation from me or anybody. Now I say that because of the context of our embedded research conversation, the charge of embedded research is not simply to avail them to the clinical enterprise for the sake of practitioners. It’s to be of service to patients. And as a patient-centered outcomes researcher, or one interested in that, I most certainly operate from the premise that the question that the patient poses is gravely important. It provides insight into what a person values, and I’m interested in developing research relative to what individuals value and what patients value. All right. So, I bristle at the fundamental question about whether you were thinking about this correctly or whether the question has any value. Now I’m going to buff out the scratches on that, and I’ll rephrase it. And I’ll say there may be a benefit to sharing your thoughts with another person to triangulate the question, right? This is the problem that I see. This is the question that I’m asking. Do you see the problem in the same way? Tell me how you see this problem. Yeah. Do you think that this is a problem? So, in that sense, your question to me is fair. Your follow-up questions are, do you see this as a problem? I am answering it from a sincere perspective of reflection, not as a point of evaluation where I’m the arbiter of right. I’m not judging your question. And so, I think that there is value in triangulating a question that you have. You seek out individuals both that you have something in common with and don’t have anything in common with, to ascertain whether they see this as a problem or if they see the problem being resolved through similar media. Does that make sense? And the reason that I’m spending time on this is that it’s not uncommon that one poses the question. How do you get patients, clinicians, and researchers to identify a research question correctly? We can talk about strategies to develop a research question, but before you get there, who’s a group to come to some agreement on the problem? Write in English. And that does not mean necessarily we 100% agree. We can say that this group feels that this reasonably represents the problem. Rather we described the problem. What is the research question we can craft relative to addressing this problem?

Health Hats: Yes. So, what you’re saying is in English, but I don’t really mean in English. What I really mean is in lay terms. Forget science, forget research, just what’s the problem? Then bring in expertise in terms of research to translate it into research terms and something that can be studied. And so now we’re back at, as you’re saying to the embedded researcher who that’s the mitzvah that embedded research serves.

Used by permission from Sue Heatherington @theWaterside

Reveal something about yourself, not easy Matthew Hudson: Now I want to interrupt you and back up because I said we have to define the problem, right? Yes. Now I don’t want to minimize what that means. Now, this is my opinion, editorial here. Yeah. But I think that to identify the problem; you have to reveal something about yourself. You become transparent about the way that you view the world. And one needs to be prepared for that to occur. You reveal something about yourself by what you identify as problematic or don’t identify as problematic, and how you frame it reveal something about yourself that you may or may not be ready to admit to yourself, much less to other people. And that is when you are home alone, looking in the mirror. Now, if you were doing that in a group of people, it can become particularly volatile, which is part of why this work is so difficult. It’s very difficult because it requires reflection that one may not be ready to address. And just because I said, first, you have to define the problem, and then you have to think critically about developing the research question. I didn’t want to skip over that. Argue is a developing the research question that could be pretty formulaic. I can talk about the research question. That’s defining the population, defining the outcome, defining the control, defining the intervention, and the timeline. I can spell all that out. But it’s the lead work that is particularly challenging, right? A problem that reveals something about yourself that we have to consider if we want to go into those waters seriously.

Self-reflection, values, and health equity Health Hats: I remember the moment that I noticed you, meaning I may have met you already. I may have whatever, but the moment where I noticed you. Okay, this is somebody I want to know more was I think you said something similar when we talked about health equity and systemic racism. And you were talking about self-reflection. And the challenge of self-reflection. And then I thought, okay, who is this guy, Matthew Hudson? So that’s so interesting.

Matthew Hudson: He’s a tortured soul.

Health Hats: No. I thought it was brilliant. I appreciated it. It opened my eyes.

Matthew Hudson: I love that you appreciated that I think it reflects. It’s part of my personal charge. We always need to reflect on who we are for ourselves and how we present to the world. But also, professionally that I’m of the mind that what one chooses to study does not occur by accident. It is a product of the values they bring to the scientific enterprise. And I’m of the mind that science isn’t value-free. So, science can be subject to the same prejudices, biases, blind spots, and oversights. While I say that, I want to be clear that I’m not talking singularly about the real problems of institutional racism, provider racism, and provider bias. I’m also speaking about issues that I would consider to be in the domain of illusion. We genuinely think the world looks this way when really it is that way, whatever those ways are. We bring a naivete to the research enterprise that constantly requires me to question myself. To continually explore where might my blind spots be or identify this as a problem. What about me thinks that this is identified as a problem where that not so much and that’s the same is true of health systems. Philosophically, why do health organizations prioritize population health now instead of 60 years ago? One could argue that the reimbursement landscape is that if we are shifting from fee for service where an institution receives a modicum of compensation every time they execute a treatment, there may be less urgency to consider how to restrict the revolving door. If you realize now that you are receiving a payment to address this malady the first lap around the track, and if you fail, your health system incurs the cost. That forces a change in thinking that a health system might start to value things more at time two compared to time one. And so, I just try to keep all of that in mind as I try to develop and think through how to develop research in a learning health system.

Health Hats: Wow. So, let’s wrap this up.

Matthew Hudson: I regret that we have to wrap it up. I can talk to you forever.

Partnership: engage with blind spots and strengths Health Hats: This is good. This is really interesting. So, what do you think if If you wanted listeners to take two or three things from this conversation, what would you, what do you think are key? So we’ve talked about embedded researchers. We’ve talked about the problems. What do you think are the key things?

Matthew Hudson: I should be easily able to articulate a number of things, but I’m going to give you a stream of consciousness.

Health Hats: Sure. That’s great.

Matthew Hudson: I’m of the mind that patients, providers, that is, healthcare providers and researchers fundamentally, they are people, and they present to the enterprise with ignorance and brilliance. Good intentions and less than good intentions. All equally. It behooves stakeholders to face their limitations and face their prejudices for themselves before they engage in partnerships. And when they engage in partnerships to accept each other for both what they can provide and their blind spots. Our obligation is to try to correct each other’s blind spots. And augment the strengths. I think that’s what I would hope individuals take from some of our discussions today. And that we understand that embedded researchers are particularly charged with thinking through those issues in service of developing generalizable knowledge that can be easily applied in service of the patients and the communities that we serve.

Health Hats: Brilliant. Thank you.

Matthew Hudson: I don’t know if it’s brilliant, but I think.

Health Hats: Thank you. Thank you. This has been great. I appreciate I appreciate your time. And

Matthew Hudson: I’ve been honored to speak with you, and I love this podcast, and I just want to thank you for the opportunity. And I hope that it’s not the last time we see each other professionally or personally.

Health Hats: Yeah. Oh, I agree. I agree.

Reflection Did you get all that, kind listeners and readers? Let me take a stab at summarizing the wisdom shared by Matt. An embedded researcher collaborates with people and organizations to investigate problems important to them. They act as listeners, translators, connectors, resources, and stewards. They can open doors to the black boxes of research, care delivery, and life. They can be employed by universities or health systems.

Sometimes the research applies locally, sometimes in similar or diverse settings, or even to a different problem altogether. Some sponsors of research give permission to do the research, and some have a commitment to implement the findings – using the results in real life. Some researchers have expertise in implementing study findings, and some don’t. Embedded researchers are more likely to bridge the two.

Healthcare providers (individuals and institutions) can directly control some of the factors related to health and can’t control others. They can’t necessarily control policy, laws, and regulations. They can’t necessarily control wages, transportation, childcare, family caregiving. Institutions can affect workforce burnout. Embedded researchers can bring expertise about what they can’t control into institutions and research processes.

Research about specific healthy behaviors, such as stopping smoking, feeds a continual learning process about other healthy behaviors. Questions people ask about healthy living require no justification. All questions have merit. Looking at questions through different lenses can help refine the problem statement and lead to more useful research. Asking questions about health can be scary – it reveals something about you and me, the askers. We need a safe place and courage. Embedded researchers can facilitate that safe place for self-reflection.

Matt seeks to walk the talk of facing our strengths, limitations, biases, and blind spots to develop knowledge to serve patients and communities. Inspiring.

Phew, how’d I do summarizing? Thanks, Matt and thank you. Onward!

The post Embedded Researchers-Translators, Connectors, Stewards #152 first appeared on Danny van Leeuwen Health Hats.

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Turn-around. Interview of Health Hats by Craig Constantine entitled, Rich, about my podcasting process. A ton of work to keep it fresh. Ruthless editing.

Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post.

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Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here

Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)

Proem.. 1

Jumping into podcasting with both feet 1

Following my nose 04:35. 2

Ton of work, keeping it fresh and manageable 06:06. 2

Ruthless editing 07:55. 3

Process of telling a story 10:08. 3

Grateful for the podcasting communities 13:56. 4

Honoring different brains 15:48. 4

Reflection 18:49. 5

Please comments and ask questions

at the comment section at the bottom of the show notes
on LinkedIn
via email
DM on Instagram or Twitter to @healthhats

Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger

Web/social media coach, Kayla Nelson

Inspired by and grateful to Steve Heatherington, Ame Sanders, Tania Marien, Fred Guitierrez, Jane Beddall, Curtis Cates, Amanda Blodgett, Carole Blueweiss, Katherine Cocks, Karena DeSouza, Heidi Frei, Suzanne Jones, Catherine Lynch, Alice Merry, Matt Neil, Dawn Powell

Sponsored by Abridge

Support Health Hats, the Podcast financially

Related podcasts and blogs

Healthcare is Hilarious. Continuing Mets Saga. Hospital. Home.

Make a Ruckus Podcasting

Plenty of Poetry– Past and Present #143

Links Podcasting Community

Pod Buffet

About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this.

To subscribe go to https://health-hats.com/

Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines.

The Show Proem From time-to-time readers and listeners ask me about my process for podcasting. Recently, Craig Constantine, a crony in podcasting, interviewed me about my podcasting journey. Craig’s process is to record a 20-minute chat and publish it immediately without editing. For listeners, find a link to Craig’s episode in the show notes. For readers, go here. Why do I republish an already published episode? I learn from different styles of production. Remember that I co-published a couple of episodes in the past few months with Mighty Casey Quinlan’s Healthcare is Hilarious. I’ll let you know my observations in the Reflections at the end.

Jumping into podcasting with both feet Craig Constantine: Hello. I’m Craig Constantine.

Health Hats: Hi Craig, I’m Danny van Leeuwen. I’m also known as Health Hats, and I’m known as Health Hats because I am a person with multiple sclerosis. I’ve been a care partner to several family members’ end-of-life journeys. I’m a nurse, and I have led several Electronic Health Record implementations, and I’ve been in the C-suite of healthcare. So, I wear a lot of hats.

Craig Constantine: Figuratively for sure and literally. Before we pressed record, we got into the topic of how you see podcasting as being a very rich experience for you. All the things that you get from it. And then we started talking about audio, and you mentioned how podcasting as an audio medium blends several different things that you’re already passionate about. And I think it’s super important to know, like you, you’ve also done a significant amount of blogging, and we also talked about how that’s very unidirectional. I totally agree. I blog a lot, and it’s very one way. And I get on my soapbox way too often. Craig does not need a megaphone. Do you recall what your experience was? So, you have a musical background. You’re also a musician. And when you started podcasting and the first time you brought somebody else in and realized the power of having that second person engage in a conversation. Do you remember what that was like? And what sort of ideas came to mind from that opening?

Health Hats: My first episode was the anniversary of my son’s death. And I had this video, a VHS video that my boss at the time had videoed an interview with my son at my 50th birthday two months before he died. I scraped the audio off that video and then told stories about our experience together, especially in his last couple of years. I didn’t interview anybody in that first episode. But it was like, oh my God, I held my nose, I took a drink, and jumped right into the possibilities of audio. And I didn’t add music until a few episodes in. I have a musician cousin, and I was talking to him, and he created some pieces for me to use. And so that opened up my mind to the possibilities of music and, oh my goodness, I’m a musician.

Following my nose Craig Constantine: How did things become possible when you realize that you had, it’s almost like a cubeville, like a giant old office space where you have all these cubes. When you stand up, it’s like the whole everything is different. You just must go for it. When you stand up and look around, you suddenly realize that you had the space you were in. All these parameters are artificial. What is the thing that’s currently like when you’re creating your show? What’s something that you’re currently most curious about? Is it the other people? Is it the topics? Is it trying to succeed at a kind of communication?

Health Hats: Yes. I feel like it shifts. I’m in this business, healthcare, and am in this business about learning. And so, I follow my nose and whether I meet people who are, or I know interesting people. And so, it’s just the individual. My first kick was a series with young adults with complex medical conditions transitioning from pediatric to adult medical care. And I interviewed a series of people, the young adult, or was a young adult, a parent, and then the two of them together, and I did a series. Then I did a series about chronic pain. So, it depends.

Ton of work, keeping it fresh and manageable Craig Constantine: Do you okay. All right. You’re a smart guy, and you do it a lot, and you’re curious. So, one question I have is, yeah. How do you reign that there are only so many waking hours and you can only do so much stuff? So how do you reign that in? And I’m wondering if audio, oh, this has to fit in a podcast. Does that help you? I can’t do that. That’s a visual concept.

Health Hats: No, that’s never come up, but what has come up is that I did have 145 weekly episodes and 500 weekly blog plus podcast episodes. And just recently decided that each episode takes from six to 30 hours to produce. And so first, I went to alternating interview and on mic episodes, and then recently, I shifted to giving myself two weeks to produce the interview episodes. It was getting to be a lot, just a lot. And so, I appreciate being able to take my time on the interview episodes. And I can play more music. So that’s good.

Craig Constantine: The mistress du jour eats all my time, and I go way down the rabbit hole. Are there any other things like either systems or mindsets or processes that you use when you find a new possibility to figure out do I want to pursue this possibility versus continue? If you did a thousand episodes the way you’re going now, that would do a ton of good how do you decide whether just to keep doing what you’re doing or whether to go in a new direction?

Ruthless editing Health Hats: I don’t know. I just do it. That’s not the kind of thoughtfulness that I have. My thoughtfulness is more, what’s the story I’m trying to tell. Each episode could be about 20 different things. That’s just too much for listeners. What are the two or three that are important? And unlike you, who doesn’t edit at all, I’m ruthless, or I’m learning to be a more and more ruthless editor. And I like the editing process. I’m a person whose brain works that I will have forgotten the whole conversation when I’m done talking to you. When I finished reading a book, I had forgotten the book. And so, the editing process allows me to open my brain and store that information differently and appreciate what just happened. “Oh, I didn’t know that we talked about that.” It’s a new discussion. And I do at every episode. I do what I call an article grade transcript, which means that what I know is that at least half of my followers are not listeners they’re reading. And I respect that. I started doing transcripts, but audio transcripts are not that interesting. We talk circular in fits and starts. It’s not that readable. I do edit for readability, which has a bonus for me. My work is I have developed quite the library of material that, I had the, we’ll have a consulting gig, and there’s something that comes up well, I’ve already done that, and I can just pull that. I have the material, whether the product is written, auditory, or video. I’ve already done the work much of the time, which is helpful.

Process of telling a story Craig Constantine: Glad to hear you talk about its written side because that’s something I’ve started. Like I’ve done one out of hundreds of conversations that I have transcripts for. I suspect that I would get better at it. The more I do them, the more I think that’s a brilliant way to think about how to integrate the learning. It’s tough when you’re recording; Only half of your mind is in the conversation. If you listen to it again while editing, that’s one way to hear it, to be exposed to it a second time. But I’m curious about, so if you’ve written many articles, what are you thinking when you look at that transcript, and you’re trying to change it into readable materials. You’re going to change the voice entirely. What are you thinking as you’re looking at that raw transcript? Do you imagine the reader? Is that not interesting enough, or are you trying to make the whole thing a coherent story? Like how does that process work?

Health Hats: That’s a good question. My process is every episode has what I call a proem, which is like a preface, and a reflection. Which is me introducing the episode and then reflecting on the episode. So, I finished the episode and then it’s time for me then some time goes on because I have quite a queue and I’ll go back, and I’ll listen to the raw file, and then I’ll write, I’ll start to write the proem, or I might start writing it and even before I listen.

Craig Constantine: Because it falls out of your head?

Health Hats: And it falls out of my head. And it helps me then to shape what are, what is the story here? What’s my story here. Like, why do I care? Why did I even do this? And I’m a storyteller. So, I’ve got a million stories. So, I try to get a sense of why this topic, why this person, you know what touched a nerve in me? And then I do my editing. Then I go through it and try to break it up into pieces and give things temporary heading. And then that’s the way for me to be a ruthless editor because then I can take out sections. And then I go through it and then just put my editor hat on because I spent 15 years as an editor of a journal, and now, I’m on the editorial team of another journal. And so, I’m used to editing. And then I edit, just clean it up, remove the passive, and just make it crisper so that when a person reads it, they’ll want to keep reading it. So that’s like what I do.

Craig Constantine: Thank you for sharing that. It’s just me being selfish. That’s super helpful to help me find cause I’m like almost everything you’re describing. That sounds hard to do because I’ve tried to do it and I’m like, okay, keep, just keep doing it.

Now a word about our sponsor, ABRIDGE.

Grateful for the podcasting communities Health Hats: Well, the other piece of that is that I am in TPF2 (The Second Podcasting Fellowship). That’s been more than three years, and we have a weekly call where we talk all things podcasting and life. And then, I host an every other week critique group, where we critique each other’s episodes and do two every call every other week. And so that’s where I learn a lot about the art of this media with this small group of people with whom we’d been working for a lot of years. I see what they do and, with Steve’s group, I’m the only healthcare person, which is great. And everybody’s got such different styles. I steal stuff all the time, and they help me work through dilemmas and answer the questions you’re asking because they come up. Of course.

Craig Constantine: I’m just like so happy to hear anybody ever talk about doing the hard work of bringing there’s an experiential part to experiencing the people on the podcast when one is listening, and then there’s that other part where it says, okay, that’s great. But now, I want to get from that, I went to hang in my head new information, and I think the written form is better for that. Even people who say they’re an auditory learner maybe just haven’t encountered enough well-written material.

Honoring different brains Health Hats: No, we all have different brains. One of my sons is an auditory learner, and he’s been that way all his life. Still, he’s a prolific reader. Anyway, I think it’s amazing how different people’s brains are. And so, I feel I wear all these different hats, and my audience has many different hats, so I have people who identify as patients. I have people follow me identifying as caregivers, knowledge management professionals, clinicians, administrators, or policymakers. And I like to think about all those different brains and, I have this image of a shelf of bobbleheads above my screen where I see Mary Sue there’s Susan, there’s Michael. I’m picturing them. So, I make sure that I am talking to each of them—now, being a Rosetta stone of healthcare. I say on my lead that I know a bit of a lot of healthcare and not a lot about that much. But I try to speak to each of them. And that includes people who are readers, who I know are readers. I know that Sue is only reading me. She has no idea about the music that’s in the podcast. No clue because she’s just reading me, and she’ll never listen to my podcast. I just know. But hey, she’s been following me for seven years. And so, I honor her.

Craig Constantine: Yeah. I think there’s deep magic you’ve got there. I’m very intentional about thinking about what I’m doing in the audio part. Still, I feel that if I were more intentional about going back through and finding the pieces like you’re doing that would serve a written learner or a reader, that would help me as much as it would help the people who are readers. So, I think you’re absolutely onto something. And I am really glad you shared all that. I think that’s very helpful. I don’t know if I may also be out there listening, finds it helpful, but I find it super helpful. So, thank you as much as I hate to say it. That’s 20 minutes. I’m sure.

Health Hats: Here we go. Great. Thanks. Yeah. Thank you so much for sharing you. You’re doing a mitzvah here, so I really appreciate it all the work that you do. So, thank you.

Craig Constantine: I’m mostly crazy excited to see that people like. My greatest giggle fits happen. When people grab something I’ve created and then build do their own thing with it. Whoa, I didn’t expect them to do that. That’s how I know Lego blocks I threw up and it goes on the floor or on the table and people grab them. I’m like, yes. Okay. Lego, this is a win. Cool. Anyway, thanks for taking the time. I know how hard it is to schedule. Thanks, Danny. Take care of yourself.

Reflection For this episode, I’ve listened, transcribed, edited audio and written for about five hours over 3 days – much less than usual for me, more than zero for Craig. My software platforms include Zoom, Audacity, Descript, Auphonic, and WordPress. I’ll spend another couple hours on show notes, a video trailer on YouTube, and disseminating on various platforms, LinkedIn, Twitter, Instagram, a seven Facebook pages. I have help from Kayla Nelson, my social media and web coach, and Joey van Leeuwen’s music. I have a sponsor. One process is not better than another. It depends on topic, purpose, audience, intent, and inertia. Now you’ve seen a bit of how the sausage is made. Next time I’ll have an interview with Matthew Hudson about embedded researchers. Be well. Onward.

The post Telling Stories for Different Brains #151 first appeared on Danny van Leeuwen Health Hats.

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Dr. Kirsten Meisinger from the Cambridge Health Alliance engages long-standing community partners in telehealth usability with joy and grace. Deep.

Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post.

| Please support my podcast. CONTRIBUTE HERE |

Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here

Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)

Proem.. 1

Introducing Kirsten Meisinger 03:14. 2

Provider engagement, loving what you do 08:37. 3

Patient, provider, community engagement intertwined 10:51. 3

Telehealth, up in 60 seconds 12:12. 4

Long-standing patient experience partners 14:55. 4

When the world blows up 17:53. 5

Public health superpower 18:51. 5

Recognizing when it doesn’t work 22:42. 6

Leadership at many levels 25:12. 7

Equity. Giving people what they need. 27:41. 8

Key points 29:41. 8

Reflection 32:27 9

Please comments and ask questions

at the comment section at the bottom of the show notes
on LinkedIn
via email
DM on Instagram or Twitter to @healthhats

Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger

Web/social media coach, Kayla Nelson

Inspiration from Mary Ellen Cortizas, Neely Williams, Freddie White-Johnson, Joanna Siegel, Karen Martin, Kristin Carman, Libby Hoy, Dick Argys, Tania Dutta, Russell Bennett, Bonnie Engelbart

Sponsored by Abridge

Links Cambridge Health Alliance

CHA Facebook Page

CHA Healthy Now Blog

Katie’s Nutrition blog

Transforming Clinical Practices Initiative

National Collaborative for Health Equity (sponsored by NCQA)

Related podcasts and blogs

Apples-to-Apples? Person-First Engagement & Power Shifting.

Minister to Community Spirit

Systemic Disparities & Inequities in Maternal Health. Still?

About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this.

To subscribe go to https://health-hats.com/

Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines.

The Show Proem Lately, the industry chatter about patient engagement has increased. Clients ask me to advise about patient engagement. What is patient engagement? How can we increase patient engagement? Is patient engagement worth it? Where do we find people to engage? What’s the business case for engagement? As time passes, my thoughts and advice change, and, frankly, I find myself at a loss to advise, even though I say patient engagement is my passion. Engagement from whose point of view, to what purpose?

A person engaged in their health – Isn’t everyone engaged in their health? My symptoms affect me. I’m in pain. I can’t function as I’d like to. I’m sad. I’m anxious. I react. I manage, or I don’t. I can accept, deny, adapt. I suffer, I advocate, I overcome. Maybe it’s my parent’s health or my partner’s or my child’s. It’s all engagement. I’m engaged in my health.

A clinician engages in their patients’ health. My neurologist said he’s an expert in what works related to treatments and therapeutics for populations of people with Multiple Sclerosis, but he doesn’t know crap about me and my life. He wants to learn about what’s important to me and about my basic habits and circumstances – transportation, finances, culture, and spiritual values, family, hobbies, exercise, diet…. He’s engaged in my health.

A patient can engage by adhering to their clinicians’ prescriptions and medical plans? Indeed, a paternalistic and common view of engagement. I’m engaged when I follow all instructions, whether I understand them, can afford them, or can get to them.

Patients engaged in governance, design, operations, and learning about medical care delivery, policy, research, technology, and business. People at the center of care (patients, direct care clinicians, and the people that support them) sit at decision and learning tables like boards, advisory councils, departmental meetings, product design sessions, insurance company business meetings.

Lately, my focus has shifted to the engagement of communities. Neighborhoods, towns, virtual, diagnosis-based – any kind of community. Communities engaged in best health for their residents and members.

Introducing Kirsten Meisinger Let me introduce our guest, Dr. Kirsten Meisinger, an international expert on Patient-Centered Medical Homes and healthcare system transformation. She was National Faculty Co-Chair for the Centers for Medicare and Medicaid Services (CMS) initiative “Transforming Clinical Practices Initiative” (TCPi), an initiative that transformed over 140,000 US practices to value-based, patient-centered medical care. She was co-chair of the National Collaborative for Health Equity (sponsored by NCQA) and a member of the Expert Panel for the Health Care Homes initiative in Australia. Currently she is helping design and implement a national pilot for Primary Care in the Private Sector in Brazil. Kirsten Meisinger, MD is Director of Provider Engagement, Regional Medical Director, Medical Director of Sexual and Reproductive Health, and Operations Lead for Telehealth at the Cambridge Health Alliance (CHA). She cares for an active Family Medicine panel at the Union Square Family Health Center, an award-winning Patient Centered Medical Home practice that was selected as one of the top 30 Ambulatory care sites in the US by the Robert Wood Johnson Foundation in 2010.

Health Hats: Kirsten, thanks for joining us today. I appreciate it. I’m looking forward to this conversation. We met at the Patient Experience Conference. I was disappointed because I went to your session because I was really interested to hear about community engagement in the development of telehealth practices. You might have spent two minutes on that. Not that the rest of it wasn’t interesting, but that’s what drew me in. So, could you introduce yourself and tell me a bit about what it is you do?

Kirsten Meisinger: Sure. It sounds like what we are going to do now is just finish that conversation that is annoyingly started but never finished at that presentation. I am Dr. Kirsten Meisinger. I’m a family physician, and I have now been at the Cambridge Health Alliance for 22 years. What does that mean? That means that I am your family doctor, and I can take care of anyone in your family. And I do pretty much anything that comes up. You usually come to me first, and then we figure out together what makes sense to do next, which is fun, I have to say. Because it’s been so long, I have so many families my kids have grown up with, and they’re often at the same schools and having the same experiences. Many of my patients were not born in the US and don’t speak English. And I often don’t speak English, which is also really fun. I have learned Portuguese because of my job, and so many of my patients were not born in the United States, and I learned Portuguese as part of my medical practice. Because it was a lot easier, I realized, speaking your language than working with interpreters. So, I came into medicine speaking Spanish and a few other languages, but now speak Portuguese most of the time, which is excellent. I also have a lot of patients from Nepal, which I just love. So, I get this amazing cultural worldwide experience when I walk into my office every day. This has been part of the inspiration for the work I think we’re going to talk about, which is trying to understand how to best serve the patients that I care so deeply about and how to have a medical system that is not in any way familiar to them. And even if it is familiar to them, it often doesn’t make any sense. Help us serve them and not have them, I think, be sacrificed unnecessarily by so many of the things that I know you have experienced, I’ve experienced. And that’s very joyful. I think day-to-day. I’m quite a happy person, as it turns out.

Provider engagement, loving what you do Health Hats: You also are the Director of Provider Engagement. What does that mean?

Kirsten Meisinger: Engagement is kind of a funny term, but I think people have settled on it to mean, do you like to come to work? When you arrive, do you give your best? And in the service to a business, it strikes me as a funny paradigm, right? Like I have to show up to work. I must be confident. I don’t have to like what’s what is it, your business if I love what I do, but if you do find joy in work, if you find a job that is joyful and animates you, you do so much more. If you are passionate about it, if your passion and your work overlap, that is genuinely something that will produce amazing results. And in medicine, to me, it makes some sense. It is an honor to be trusted with the knowledge and information that my patients and I share. Honestly, I try to give pieces of my life to them, so it doesn’t feel one-directional when appropriate. And that kind of engagements that we have with each other can be measured in things like Likert scales, which are like, how engaged are you? Again, if you don’t explain what that means, it doesn’t ring true, but there are easy ways to measure how much you trust your doctor or care provider? How much do you respect your boss? So, engagement, I think, is an interesting and sometimes useful term to be the Director of Provider Engagement. All I’m trying to do is help the Cambridge Health Alliance medical institution understand what makes us tick, how do we break? Get the best out of ourselves? How does the organization help us become our best selves? Because we know that medical care is safer, higher quality. And honestly, again, more joyful when you have providers and staff, and patients who love being there have a good experience, feel psychologically safe, and can leave, hopefully, feeling stronger, more centered, and more empowered than when they came.

Patient, provider, community engagement intertwined Health Hats: So, are you suggesting that patient engagement, provider engagement, community engagement are like an EKG where maybe there are three leads where you’re looking at something central from different windows?

Kirsten Meisinger: I think that’s a very fair statement. And I might say there’s even more. They’re closer even than that. Because I believe they are the same. When people know whether and we don’t know with our thinking brain, we know with our limbic system, or I call it like the lizard brain. Like we know with our lizard brain, when a place is joyful, when you feel safe, when people there also feel safe, when they enjoy what they’re doing, you can walk into a place and there’s some weird energy in the air, and you just know. So, I would argue you create a safe, joyful community, or you don’t. And all of those three things will sing, and this is the same tune, but right. To slightly change your analogy, it’s the same song, but you might all have different parts, right? It should harmonize. That, I think that may be, feel closer to how I think.

Telehealth, up in 60 seconds Health Hats: Okay. So, let’s take this to the reason I wanted to go to your session, which is about how this engagement, whether it’s provider, community, or patient, influenced the trajectory of telehealth in this COVID world that we’re in?

Kirsten Meisinger: So, telehealth, I would say, is just the latest place that I have been doing this work, but I have to say, honestly, hands down the most fun. I love IT (Information Technology) people. They’re passionate and cerebral and just a joy for me. That’s just a joy. I like smart people, it turns out, and if you have a sense of humor, we’re going to get along great. So, bringing in all three members of that kind of triad we’re outlining is essential. If you’re going to be trying to make a place safe for everyone. And if you’re going to make it worth visiting you. It has always been one of those truisms, right? Everyone always says you have to involve what they call the end-user. And everyone thinks of the Apple Store because they have done such a wonderful job of taking a little rectangle and turning it into an obsession. And they had to do that with the people who were using it. I feel like any phone you buy, not like a cell phone, but like a landline phone, had no end-user input. Cause I cannot use those things. I cannot figure out the buttons I can barely listen to messages. Like I am a mess when it comes to landlines now, and I’m old. I had landlines. I had the rotary phones, but anyway. The idea then in healthcare IT, the idea just with televisits was, we had overnight to say, okay, whoa, stop coming in because no one safe around anyone else for a short time. It turns out, not a short time. We now have to do everything either over the phone or over video. That’s a considerable project. Fortunately for us, we had already been looking at how we communicate using our little rectangle computer, also called a cell phone or a mobile phone, because we’re all obsessed with these things. So, we’d already tried to figure out how. How can we get healthcare on that? How can I help you without you having to lose half a day and come to an appointment? Because that has always just felt a little disrespectful to me, and I am going as fast as I can in clinic. And I’m never going to get there on time because everybody never has. Doesn’t have enough time in the schedule in the first place. Like I can barely get through how your family’s doing in 20 minutes, much less actually what you need to leave feeling more empowered and healthier.

Long-standing patient experience partners Kirsten Meisinger: So, we already had patients by our side. We were already working with them, saying, please tell us your experiences, right? When you send an email, what happens when you call?? How can we get better? How do we improve? And I have to say, people are usually way too nice. You have to pull out of them any negative experiences. So, thank you, People. Thank you, human beings, for actually being lovely. But we can, over time, as you develop these relationships, right? They start to feel like they can tell you things because every time they tell you something bad, the only thing that happened was you thanked them, and something got better. Or you just thank them because we couldn’t make it better just to be fully transparent. So, when COVID hit, we could keep those relationships, which had also been virtual. It was so fashion-forward, and we were so clever right before COVID; you’re like, Oh, we’re going to do all these meetings just virtual. Isn’t it? Everyone was like, oh, I don’t know. And of course, now everything’s virtual, and we’re all okay with it. So, we had this infrastructure. It was fabulous. We just kept rolling, and we said, okay, help, what do we do? How do we communicate with you? What do you, where are you getting information about COVID, right? The world just blew up. No one knew anything. So, we quickly were able to find out that we are not just the future, the patients on our IT committee, we’re getting information, and our trusted community partners are getting information. So, because then, CHA has reached out to the significant numbers of people in our community for a decade. Meaning, there’s a very large group of patients that come to CHA from Brazil. A very large group of patients come to CHA from Bangladesh, from Nepal different parts of India, India is a big place. So, we have communication with the community agencies that are also coming up to try and help people as they change countries, languages, and healthcare systems. So, we just quickly pivoted and said, okay, where are you getting information? How do we help you? It turns out Facebook was a big thing. So, we just started doing sessions on there. CHA has a great Facebook page. If anyone is interested, it’s in many languages. If you would like to read about COVID in five different languages, that is the place for you to go. All those relationships came, I think, into play when we had almost no time to get these things done, and we’re just incredibly useful, right? The most efficient way to design something is to ask the person you’re designing it for, which we already had in place. We did a pretty good job. We wound up doing many of our visits over the telephone because it turns out it’s tough for people to download an app onto whatever they have in a different language. That should have been obvious. But we just used the tools that we had. Now we’ve used the same structure and committees and tried to move forward with a kind of video visit where you just push the link, and you’re boom into the video. So, like a Zoom, you have to download an application to get that link to work.

When the world blows up Health Hats: Okay. What I’m hearing is that you already had relationships on different committees in the organization. You had relationships with community organizations, and that you leveraged those existing relationships into sort of the urgency of the day.

Kirsten Meisinger: Yes, and directions. So again, right when the world is just blown up, you don’t know which direction to head. If you at least know who you’re heading towards, you can then right. They can at least call out. I call out, you can Marco Polo – try and figure it out. Which is precisely what it felt like. It felt a lot like Marco Polo. We’d be like, is that it? And they’re like, no, not yet. I’m over here. Oh, am I closer yet? You’re closer, but you’re not here.

Public health superpower Health Hats: Yeah. Oh, interesting. It is one of the things that come with it. It’s often about control when you talk to people about partnering with patients, caregivers, and communities, especially when you talk to the patients, the caregivers, and the communities it’s about control, it’s about power. It’s about a shift in power dynamics, which is hard, really hard. And so, what I’m hearing is that Cambridge Health Alliance already had a culture of sharing that power. So, you’ve been there for 20 years. This didn’t just happen fully birthed. What was the evolution that got to where the organization was comfortable and therefore could take advantage of that culture to manage this disruption?

Kirsten Meisinger: I think one of the big pieces that we were fortunate to have with us for now decades is that Cambridge is the Cambridge Health Alliance. The CEO’s job is the same as the Cambridge Public Health Commissioner. So, it’s the same. And what that means is that we have a superpower that most health organizations don’t have, which is we are responsible for the health of our community, whether you’re a patient or not. And so, in public health, I think people know a little more about public health now from COVID, but a lot of COVID didn’t get to be directed by public health, which is still shocking to me. What a missed opportunity in this country. Because the whole job of public health is to look at the greater good and say, what do we do for the people who live in this place to make sure that they are happier, healthier, and more empowered. It’s that kind of invisible work a little like primary care, right? So, if I do my job, nothing happens, you live to 90, you’re happy. You’re healthy. You feel great. See me every once in a while. That is my definition of success, right? That is never going to get a syndicated TV show. That is so boring. And how public health is even worse, right? If public health works, like you, never die of dysentery; it’s all these series of non-events. We are also a multi-specialty organization. We have hospitals that we have ERs, and we have those surgeons, and we have thoracic surgeons. We have all the things that you have when things go wrong. But our perspective, our viewpoint comes from the community, not from the medical system. And that makes all the difference.

Health Hats: That is huge. Oh, my goodness. That’s huge.

Now a word about our sponsor, ABRIDGE.

Recognizing when it doesn’t work Health Hats: Let me ask you a different question. The question I was going to ask you was how do you recognize success? But I think I’m more interested in how is it that it’s not working?

Kirsten Meisinger: So, let me take that on two different levels if it’s okay with you. Part of why we’ve always shared power is that you come in, and I patiently explained to you that you’re a complete mess. And here’s what you have to do, and you likely just nod and smile and thank me and go off and do whatever you’re going to do anyway. And because you’re tied to me in our primary care system, you do come back. Some people make an effort to get away, but it’s so much work to change doctors. You never really like most people don’t do it. Even if you have to dislike your doctor to change your doctor, and I say, doctor, because so many other health professions are not allowed to be PCPs (Primary Care Physicians). I’m hoping that’s changing. I’m hoping that we can let physician assistants, for example, become PCPs soon. And some nurse practitioners are, but they’re always supervised within the system. And what’ll happen is that you’ll come again next visit. It’ll probably not be when I asked you to, because you’re already resentful. And then I will compound my failure by lecturing you about how bad you are. This is what the medical system has set up as great medical care and people who genuinely care and want to make a difference in people. I quickly realize that this is not of a plan, not going to work, just to have high emotional intelligence. This is not ever going to work. So, you know that you’ve failed in the air, right? So, the person’s body language is collapsed, and they’re not happy that you’ve failed. When people are not getting better, and you’re working harder than they are, or you think you are, right. They’re not working at all because you haven’t helped them change in any way. That is how we know on the individual level, right on the one-on-one level, that we failed. When we failed in the community, people just don’t show up. You can have this wonderful event. You can put so much thought and planning into it. You’re so proud of yourself. You’re convinced that just, like putting in a few more hours of vaccine access, people are going to flood the hospital, and then no one comes. So, they’re a flip of each other.

Health Hats: People vote with their feet. Yeah. Yeah. Interesting. What should we be talking about that we’re not?

Leadership at many levels Kirsten Meisinger: I think your last question leads me naturally towards a feeling of equity and hierarchy. I tend to view the world and structures. I like structures. I like changing them, but I like making flat structures. I don’t like making structures that have a hierarchy. I have no affinity to hierarchy. I find the idea that a single person gets control over an entire organization or a nation or the opposite of what I think is the most effective way to get the best results in any given system. Not that leadership isn’t important, but I think there are leaders at so many different levels of organizations that you want to have; what you want as an organization that calls on the natural leaders, the people who will work harder for their internal motivated motivation and let them shine. And when you don’t, those very same people who are back to engagement are their biggest critics because they’re so profoundly disrespected and so deeply angry that they’re brilliance is going nowhere. They don’t want to. No one wants to feel like they’re failing all the time. And if you feel like you have a great way to succeed and no one’s listening, that is maddening. And that is that to me is all about equity, right? That is equity, quite frankly.

Health Hats: As I’m listening to talk, is that my view about leaders. My personal view about leadership, and I’ve been a leader in many different venues, is that the first job is to get crap out of people’s way so that they can be leaders themselves. And so, I think that looking at the energy behind engagement. Whether it’s clinician engagement or patient engagement, community engagement, whatever is that I like that uncovering the leadership wherever it happens and then leveraging that forward, which is a tricky dance because people have different motivations and different priorities and different expectations and different bosses themselves. Whether it’s in the family or the organization So yeah, the power dynamic.

Equity. Giving people what they need. Kirsten Meisinger: I would say any is not to derail you too much, but one of the things that unite people is a common purpose, right? And I think people confuse that with uniformity. So, one of the ways I’ve seen people become their best. And I view my leadership as actually helping, not just getting things out of the way for people. And I think it’s interesting. You would say that because you’re someone who’s going to go somewhere no matter, regardless, right? You’re either going to have to run them over, or people can help get things out of your way, but not everybody is like that. And so, my actual personal view of leadership is to help people achieve their goals as long as they’re aligned with the common goals that we’re all sharing. If you, and so I’ll just, some examples. So many of the providers at my practices have a sort of passion that they rate that brought them into healthcare. One of my providers has an incredibly well-known nutrition blog actually and is incredibly successful at that. And she brings that passion into her patient care. Part of my job is to make sure that part of her, that brought her here in the first place is not destroyed as part of, we’re not going to have it be the Borg and the sameness and right. But now that’s nice, but that’s not your future. You’re going to have to do it this way. Wait, other people actually can’t do much more than what they’re doing for whatever reason in their lives. And so, what I want to do then is allow them to have the space to have their life step forward and then have the job. They are in the backseat for a while. Because remember, we’re in this for the long game, right? All the people here, I’m hoping you will be here for 20, 30 years. So, if I need to give you a little space and you’re not moving, it’s not like I’m getting things out of your way. They can be in your way. You’re not going anywhere. You just have to hold your work almost in stasis while your life progresses. That’s also fine. So, to me, it is complicated. Just like you said, it’s incredibly complicated. And the basis of equity is that you give people what they need. You don’t give people the same thing because they’re not the same.

Key points Health Hats: Okay. Here’s how I want to end this, I think what you just said, if we were going to say that there are three things that we hope our listeners get out of this conversation. I bet that last statement you made about equity, getting people what they need, which is not the same for everybody, is one of them. I think that the public health view of the organization might be another one. So, do you agree with those two, and what one or two would you add?

Kirsten Meisinger: Oh, I think I agree. I think I might get even a little sillier and say public health and primary care are a superpower, and they’re just a silent superpower. And then I would, I think where we started right, is a deep love and respect. For the patients in patient care that without that, it’s not something worth having. And everyone in the office has an important part in that I often say we don’t know who patients are going to fall in love with. So let them fall in love just to get right. This is where I would say get out of the way.

Health Hats: It’s funny. I worked for a while at Boston Children’s Hospital. I led their patient family experience initiative. And one of the things that amazed me is I would spend some time in the lab. And there were some phlebotomists. People are sticking needles in these kids, who were their favorite person. That just totally blew me away.

Kirsten Meisinger: And to allow everyone to become that favorite person to someone is joy. That is what I hope to achieve someday. I think we’re pretty in love with each other at my cute little site at CHA, and we do genuinely care for each other and our patients. And I do think we have those moments of grace, and it is difficult. To maintain that even within a much larger, less friendly medical system. So, it does sadly feel a bit like a struggle every day, and you have these just unforgettable moments that keep you going

Health Hats: Well, thank you. This has been lovely. I appreciate your time.

Kirsten Meisinger: You’re very welcome. I appreciate you.

Health Hats: Be well, thank you. If there’s anything I can do for you, let me know.

Kirsten Meisinger: It is a pleasure to get to know you better. Thank you for the time. Take care.

Reflection The challenge of giving a serious nod to engagement is that few of us are prepared for success. Being super engaged in my health means that I’m the CEO of my health team and manage myself and my subcontractors well. It means I have a care partner who can step in when I can’t – a succession plan. It means that I do everything I can to operate at peak performance. All while I’m sick or disabled:( The clinician engaged in their patients’ health means that they solicit and accept their patients’ expertise, and they have the humility to admit how little expertise they have in non-drug, non-surgery treatment, or actually, much outside their specialty – like the reality of people’s day-to-day life challenges. Increasing community engagement in governance, design, operations, and learning leads inevitably to pressure for transparent price lists before service; seamless transition from one setting or clinician to the next; on-demand self-scheduling; patient and clinician-controlled health data sharing; easy, friendly telehealth; access to and payment for non-drug, non-surgery treatments; funding research about outcomes that matter to people, and on and on. Perhaps we need to be more specific about what we mean by engagement. And be prepared for what we wish for.

The post Community Engagement – Harmonizing to the Same Tune #150 first appeared on Danny van Leeuwen Health Hats.

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My son. Mike, died 19 years ago, age 26. Wasn’t born with a tattoo telling him how long he had to live. Blood, married, intentional families. Love & boundaries.

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Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here

Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)

Proem 2021. 1

Open Hearts 2018 03:27. 1

Love myself 2002 04:43. 2

He met a girl 2018 09:50. 3

Birthday wishes for the old guy 2002 11:44. 3

Spiritual health 2018 12:40. 4

Lifetime warranty 2018 17:19. 4

Not personalizing death 2018 19:32. 5

Leave me a sign 2018 27:53. 6

Reflection 2020 30:00 7

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Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger

Sponsored by Abridge

Thanks to these fine people who inspired me for this episode: Robert Doherty, Simon and Ruben van Leeuwen, Ann Boland, Anica Madeo, Andrea Condit, India Duncan, Lenore Nowicky

Links Related podcasts and blogs

Superpower: Accepting What Is #1 & #99

Best Spiritual Health, Dying

Deconstructing Grief

About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this.

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The Show Proem 2021 I wasn’t born with a tattoo on my ass telling me how long I have to live. Welcome to the third anniversary of Health Hats, the Podcast, episode number 149. On November 15th, 2018, the first episode honored my son, Mike Funk, who died on November 18th, 2002, nineteen years ago, age 26, of metastatic melanoma. Mike, a wise poet, found his best spiritual health in that last year of his life. Hence, the most memorable sentence in my life. I wasn’t born with a tattoo on my ass telling me how long I have to live. I’m grateful to have known Mike, my son, our brother, our friend.

I resurrect this episode to celebrate Mike and celebrate family – blood family, married family, intentional family. Mike was part of our intentional family. He was our son from other parents. Mike and I mused often about family especially in his final year. As you can imagine his intense feelings about his blood family and his intentional family colored those conversations. Ever the poet, we talked about the challenge of family as unconditional love, especially when you’ve been treated badly, neglected, abused, and left. We spoke about boundaries, unconditional love with boundaries, standing up for yourself, protecting yourself, setting limits.

On this anniversary of dying, podcasting, life, I’m celebrating my families, my supporters, listeners, readers, and compatriots. I miss Mike, my mom, Ruth, my Uncle Leon, my sister-in-law, Peggy, my friend Bob Doherty. The partial list grows longer as I continue to experience life. Yet, life is good. Gratefully, here you go, episode one, ninety-nine, and 149. Happy Thanksgiving.

Open Hearts 2018 Health Hats: In this session, I’ll share some tape of an interview with Mike a few months before he died. Bob Doherty conducted that interview and some thoughts and stories from me. One day, Mike and I were sitting at the kitchen table, talking about dying and superpowers. And Mike thought that he and I had the same superpower. We both accept what is. Not the ‘life sucks, what’re you gonna do’ variety of acceptance, but the ‘yup, here is impending death, how can we live our best lives’ variety.

Love myself 2002 Bob Doherty was interviewing Michael Funk. I’m sure you’ll be able to tell who is who.

Michael Funk: Yeah. I meant to just shoot questions, and we’ll just rap.

Bob Doherty: All right. Why don’t I ask you the same questions I want to ask other people. How did you meet this jamoke called Danny?

Bob Doherty: You had two awful go-arounds with cancer intervention recently. Then more bad news. Tough thing to take.

He met a girl 2018 Health Hats: Oh, man. That just makes me want to cry. Love myself. I remember when Mike was diagnosed with melanoma, we saw this ugly thing on his neck. We, I, knew it was bad. He had surgery to have it removed; some nodes came out, and a year of Interferon chemotherapy. Those were hard years for him. He felt like crap all the time. He was pretty freaked out. We were pretty freaked out after that, after the chemotherapy. Some time passed, and he pulled his life together after that, deciding to go to school, went to Geneseo in upstate NY, met a girl, and he was in love. It was wonderful. Then one day I got a call, ‘I’m numb on my right side.’ I thought, ‘Oh man, this isn’t good.’ Sure enough, he had a brain tumor, had surgery, and then he had a lung tumor and had surgery, then more brain tumors. I’m proud of us as a family. We pulled together and supported him and supported each other and coordinated his care. We had weekly phone calls where we would share about what’s been going on for the week and what are our upcoming challenges? What tests are coming up and doctor’s appointments and who’s going to take them and how are Mike and Betsy they feeling?

Birthday wishes for the old guy 2002 Bob Doherty: What birthday wishes do you have for the old guy?

Spiritual health 2018 Health Hats: Oh, Mike, I just love you. This morning. I reached out to Bob Doherty, gave him a call to get his take on the experience he had interviewing Mike and being part of Mike’s illness and death. Bob was my boss, my colleague, and my friend. He did the video of Mike at my 50th birthday party.

Health Hats: Bob, what was your experience of Mike and his passing?

Bob Doherty: As the diagnosis for Mike became clear and abysmal, it became traumatic for everyone concerned, including Mike and his girlfriend. Danny was the caretaker, guiding Mike and providing him with some basic stabilizing parenting and love in a very inclusive and full way. Mike had moved into his home, took guidance from him, and improved his life in very critical ways. He moved away from any debilitating behaviors. He was a very free-spirited, energized guy with a bright mind. And now he always felt great confidence about his thinking and his life. So, it was marvelous. He was an ideal fellow. But Danny contributed to his functionality very basically, and Ann and his boys. That was interesting. Shortly before he died, Danny had a 50th birthday, and I interviewed him on that birthday. Within weeks after that, I put together a little video, 30 minutes video, which the family treasured, I just reviewed it today. Now I’m approaching the anniversary of his death of many years, I was struck again by his philosophical wisdom for a person of his age and his condition, which is soon to die. It was clear that was the direction. He was enthusiastic about life. He was hopeful about the moment, appreciative of all around him. He had a view of the world that was an older man’s view, value. He didn’t mention property or money; he didn’t even mention sadness. He talked about connection, contribution, appreciation of his life as it is exactly. He valued connection with all around him, including his girlfriend. It was rather startling to hear that again from a young person so well-formed philosophically or grasping life and how we would all like to. I think we all struggle with life’s meaning and direction, and he has a meaning down, which was appreciating each other, without any overarching religious, philosophical commitment that was in any way jarring. He just understood and appreciated his own and other people’s lives. So I consider that value, the value of Danny van Leeuwen and Ann and what they bring to the world and shared. Mike, by the way, was a wayward adolescent that arrived at Danny’s house. He said, I just liked the environment, so I never left. Danny was okay with that. Makes sense. So, like a fairy tale, there is a young and vibrant, thinking, and a bright guy having gotten to a point in his life of satisfaction. I’m now 74 years old, and I’m getting closer to it, but I’m not quite where he was, which is greatly appreciate every day. It was wonderful to know him. And that was nice to experience that love is transferable. That’s special.

Lifetime warranty 2018 Health Hats: So, some of the time, I think, Mike was just full of life. And some of the times, he just felt really miserable. He wrote a lot of poetry. Believe it or not, we had a lot of laughs. Some funny stuff happened. When we went to buy him a computer at Circuit City, this young salesperson wanted to sell them a lifetime warranty on the computer. Mike kept saying, ‘I don’t really want a lifetime warranty.’ The guy was young and determined. Mike finally said, I’ve got brain tumors, and I’m going to die in three months. I have no use for a lifetime warranty.’ Poor guy. The poor guy was mortified. We were hysterical. We appreciated that Mike was not the, ‘why me, oh my God, life is so unjust.’ He always felt, why not us? Why not him? Why not me? Why not? Whatever. I think it helped me when I got a diagnosis of Secondary Progressive Multiple Sclerosis. Mike and I both won a lottery we didn’t buy tickets for.

Now a word about our sponsor, ABRIDGE.

Not personalizing death 2018 Health Hats: So your wife Marianne died not that long after Mike died. I’m wondering about -, I know they’re very different experiences, but death is death. For not being a member of my immediate family, you were as involved in the experience of him being sick and dying as anybody. I’ve always wondered about how or if that may have affected how you experienced Marianne’s death.

Bob Doherty: Wow. I need to think a little more about it, but I think the experiences are identical in that death is death. Death is so stunning and final. My wife died from an aneurysm and it took 18 hours from the beginning of the event to her loss of life. It was quick, bang, tremendous instant change. But they were the same in that the ultimate result of grief and loss is an appreciation of what you experienced and being alive and connected to that person. And, in summary, is gratitude. And I have accomplished that with my wife, and with Mike. I, I was able to fortunate to never personalize the experience. Her death was her death. I didn’t wrap myself in cloth and ashes and feel sorry for myself. I was traumatized. I had to learn to live my life in an entirely different way. But somehow, I never felt resentful. And I watched Danny go through this process. He reached out for counseling help as Mike was sick and sicker. And I did the same within four days of her death. I was asking EAP for a referral to grief counseling, and I went to a group setting grief counseling. But throughout my experience, as heartbreaking as it was, and it was extremely heartbreaking, I never felt Danny shaking his fist at the sky or the gods or the world. And I didn’t either. So, there was a commonality there. We both didn’t personalize the loss as some injustice; we accepted life as it was going on. And we came very quickly to appreciate the power of the person that we love. So, there was that commonality. I also, I had an initial feeling on my right side. How can people just say driving around and shopping? Don’t they know that the world stops, I felt that with Danny. I remember one day, shortly before Mike died, there he was just trying to do the best he could in all areas. And he told me he was sorry about not being as attentive at work as he had been. I think we were out in the hall, or there was a bench there, and we sat down. It was outside the hospital, and Danny cried. It was appropriate to cry and, we sat there, and he cried a little. I might’ve joined him with a little quiet tear. There were just two men together coping with life as life was taking us. And I remember Mike’s funeral, a particularly sad event because he was so fricking young and vital. But his contribution to life can be seen on that video. It’s remarkable that a young man, particularly a guy with some rejection and his family of origin, managed to accomplish at this young age. So that’s how it was. We’re appropriately sad at the moment. We didn’t blame the world for a tragic life. We managed the way we best could. Our best was pretty damn good. I don’t think there’s much more to be said about it.

Health Hats: Oh, man. Yeah. What to say?

Bob Doherty: You’re crying again? We know how to live!

Health Hats: Yeah. I wouldn’t have given this up for anything. It was wonderful. The whole thing was wonderful. Painful. Wonderful.

Bob Doherty: Yes. Life is wonderful. It’s got some rough edges that’s for sure. Yeah. But for those of us that try to walk the earth and make it a little better. We know how to live.

Health Hats: Buddy, thank you so much.

Bob Doherty: Oh, you’re more than welcome.

Health Hats: I love you.

Bob Doherty: I love you too, my friend.

Leave me a sign 2018 Health Hats: Mike was a gift. I have to tell you one more story, a great story. Mike and I talked a lot about dying and what was it like, was there an afterlife? What would happen? He didn’t think there would be one, but he sure wondered. So, one day we’re sitting there, and I say, ‘Mike, this is totally weird, but if after you die, you could leave me a sign. Oh, my God, that would just be fabulous.’ So, it was about, I don’t know, three months after he died. Probably a little longer. He died in November. This was probably in the spring, and we were doing this work on our front stoop. The stoop was a big block of cement that had tilted. And so my wife was redoing the cement and building it up so that it was level. I was her cement mixer, and she was the stone worker. When she got done, I cleaned everything up and washed everything down and took a fresh piece of plastic out of a bag, and covered the wet cement so it could cure overnight. In the morning, I took the plastic off the cement, and there was Mike’s guitar pick sitting on top of the cement. I don’t know what it means. What really happened? But it was cool. God, it was cool. I still have that pick. Oh goodness. All right, Mike, this one’s for you.

Reflection 2020 Danny helped me love myself. I had to love myself to have a good relationship with him. That’s the most glorious thing anyone has ever said about me. Let’s celebrate gratefulness right now, together. Connection in a pandemic: priceless. Onward.

The post Family: Open Heart, Unconditional Love, Boundaries #149 first appeared on Danny van Leeuwen Health Hats.

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These three stories, my doctor and me, equity in health systems, care of children with severe heart problems, all contain a problem desperately needing fixing, choices – some based as research, others not – some action taken or no action. How can we continually learn from experience, share that cumulative experience to inform future choice-making and action?

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Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here

Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)

Proem.. 1

Underwhelming response to brilliance 03:41. 1

Pitches, no home runs 05:26. 2

Invoke curiosity without commitment 8:47. 2

Reflection 11:00. 3

Please comments and ask questions

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Credits Music, Mou’s Blues by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger

Web/social media coach, Kayla Nelson

Inspired by and grateful to Amy Price, Duane Reynolds, Matthew Hudson, Laura Marcial, Melissa Reynolds

Sponsored by Abridge

Support Health Hats, the Podcast financially

Links A framework for value-creating learning health systems

AHRQ About Learning Health Systems

Pregnancy and Fibromyalgia by Melissa Reynolds

Related podcasts and blogs

Accessible Yoga: Honor Your Body

Everyone-Included Research

Hardwiring Continual Learning

About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this.

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The Show Proem When first diagnosed with Multiple Sclerosis, my neurologist told me he was expert in treating groups of people (populations) with MS, but he didn’t know crap about me. His job was to learn about me, and my job was to learn about MS. I shared what was important to me in my life, and he taught me about MS and treatments. We slowly learned what worked for me in care and treatment and what didn’t and re-examine year after year.

In last week’s podcast episode, we chatted with Duane Reynolds from the Just Health Collaborative. He guides health systems in creating cultures of belonging, enabling a fair and just opportunity for everyone to achieve optimal health. I wonder what worked and what didn’t among the interventions his clients tried?

When I worked at Boston Children’s Hospital, I was fascinated by their Cardiology Department’s Standardized Clinical Assessment And Management Plans (SCAMPs) to promote, not require, care standardization. SCAMPs “offered a clinician-designed approach to promoting care standardization that accommodates patients’ individual differences, respects providers’ clinical acumen, and keeps pace with the rapid growth of medical knowledge.” In lay terms, that was similar to my neurologist. People are different. Understand them, their preferences, stay up to date with research, make a treatment/care choice, and document what worked and what didn’t. Re-examine. Continually learn.

Underwhelming response to brilliance I have introduced this idea of continuously studying the impact of choices made by systems, clinicians, and individuals in many flavors and contexts for more than 20 years. Continuously studying the impact of choices made seems like such a no-brainer to me—the most basic of basic. In self-absorbed moments, I even think it’s brilliant. However, the responses have been underwhelming, ranging from ‘of course, great idea,’ to a pat on the head, to nothing. Anecdotally, I’ve found that people who identify as a patient or caregiver almost always think it’s a great idea. My friend Melissa Reynolds in New Zealand, a Maypole for people with Fibromyalgia and Chronic Fatigue, teaches continual systematic learning of what works and what doesn’t for pain management and everyday parent functioning for individuals and then shares that out to her virtual communities. And round and round it goes. Many, but not most clinicians, say yes, “that’s how you can manage cook-book medicine.” Researchers and measure developers mostly have no response. It flies right by. Why? Is it the packaging, the audience, the methodology, inertia? Clearly, I’m missing something. What?

Pitches, no home runs I’ve tried various pitches. Here’s one: Sometimes I can look to science to say that if I take this medicine, have that procedure, change these habits, take those vaccines, I’m likely to feel better, function easier, prevent something bad, accomplish a goal in my life. But it might not. The studies tell me about populations, groups of people, not me specifically. I’m an individual with specific goals in life with a family, religious, ethnic, regional history. I make medical and health choices or don’t (a choice in itself). I want to know how my choices impact my outlook, health, function, and well-being? Was it as expected by the science or not? Wouldn’t rolling up that individual information inform us differently and continuously about value and where we should spend our tens or trillions of healthcare dollars and hours?

Here’s a different pitch: Many of us care deeply about health equity. Health equity is a puzzle of systemic, hyper-local, and individual issues and circumstances. How can we study the impact of interventions we experiment with to reduce inequities on individuals rolled up into communities, delivery systems, and regions? How can we answer the questions: Do systemic interventions really affect individual choices and circumstances? Could we shine a different light on value to society and people by continuously studying the impact of choices made?

Yet another pitch I’ve tried. Patients, caregivers, and their clinician partners make medical and treatment decisions every day. Some choose A, others choose B, C, D, E, F, and others don’t choose (itself a choice). Then what happens? What was the outcome? How did they fare? Did they get better? Did their function improve? Did their outlook lighten? Who made which decision, in what circumstances, conditions, and physical environment, living with which systems? What questions could we ask of a data set that included the choices we made?

Now a word from our sponsor, Abridge. Use Abridge during your visit with your primary care, specialist, or any clinician. Put the app on the table or desk, push the big pink button, and record the conversation. Read the transcript or listen to clips when you get home. Check out the app at abridge.com or download it on the Apple App Store or Google Play Store. Record your health care conversations.

Invoke curiosity without commitment I asked my friend and podcast guest, Amy Price, a researcher from Sanford and an editor of the British Medical Journal, about this.

Health Hats: I have two questions for you. One is, am I onto something? And number two is what’s step one.

Amy Price: Okay. I think you’re onto something, and I think it is a huge unspoken need. All right. I understand why you’re not getting traction. And I think the first step is to invoke curiosity without commitment.

Health Hats: Yes. I totally resonate with that. Yes.

Amy Price: Okay. So that, to me, that will be step one.

Health Hats: Okay. All right. And to me, the way I do that is to tell stories. And then see who thinks that’s a good story and then join with them to figure out what’s step two.

Amy Price: Because if they have an investment in the steps, then they will go farther.

Health Hats: Brilliant.

Amy Price: And then by having an investment in the steps, they have an investment in you. I find it’s helpful if I say I’m going somewhere. I’ll explain where that somewhere is. And then I say to people that are a little bit interested, do you want to come with me? Yeah. And then if I say, do you want to come with me, how much do they want to build? How much are they capable of building? And if they’re just coming with me, that leaves them the dignity, just to watch and support from the background. But if they have ideas, it leaves them, leaves doors open for them to bring innovations. I never really thought of that. It is the whole co-production. This is a prime question for co-production.

Reflection Invoke curiosity without commitment. Certainly doable, small, repeatable, iterative. What else can I learn? I’m scheduled to speak with Matthew Hudson about embedded researchers this week, and Talya Miron-Shatz, an Israeli researcher and author of Your Life Depends on It. What you can do to make better choices about your health in December. I will take the opportunity to speak to them about this idea. Perhaps I can corral my friend, previous guest, and informaticist, Laura Marcial, to muse with me as well. Stay tuned. Share your thoughts. Keep the faith.

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