Advocacy (Public Policy): Recent Episodes
AiArthritis Voices 360
Official Talk Show of the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis)
A revisit to the table with Deb Constien, Estela Mata, and Tiffany Westrich-Robertson as they continue discussing the dynamics of support - including needs of the patient as well as others in the patient's support circle. Building on Episode 43 and Episode 48, they start a support tracking tool to help patients and families/friends better assess their needs and how, together, we can work to address them! You're invited to help us continue developing this aid - find out how!
Read our guide for starting your own Support Network tool and submit ideas or suggestions for adding to it.
You can find, follow, and listen on Podbean, Spotify, Apple Podcast, or where ever you do podcasts. Please follow, rate, and subscribe to the show, then share it with someone. Be sure to check out our top-rated show on Feedspot!
Episode Timeline
0:55 - Welcome & Introduction by Tiffany Westrich-Robertson1:28 - Introductions to Deb and Estela1:45 - Founder of Looms 4 Lupus2:34 - Dedicated AiArthritis volunteer.3:35 - Mission of the show4:54 - Diverse support6:11 - Addition of the #360it to the episodes.8:35 - The impact of Juana's diagnosis11:08 - Supporting the support12:25 - Deb’s story13:40 - Communication plays a big role14:04 - Friends can be your primary supporters.15:40 - Deb shares a story about an early experience with her husband19:20 - Step One: Who is in your Support Network?21:28 - This leads to Step Two: Assign Roles.23:04 - Step Three: What are the needs of each person?30:23 - Step Four: Evolution of Needs33:26 - Learning curve for everyone38:32 - Deb addresses disease misunderstandings as a main cause of patient needs for support.40:46 - They discuss additional things to consider, such as learning more about the disease, symptoms, treatments, as well as considering various means of providing support.47:30 - Tiffany invites listeners to contribute to building this tool and using it.
In this episode, AiArthritis CEO and person living with Axial Spondyloarthritis - Tiffany Westrich-Robertson - and Dr. Lisa Zickuhr - rheumatologist from Washington University - continue the conversation around shared-decision making and its importance around patient-rheumatologist communication. They focus on a research project both are involved in, and that YOU can join! The project aims to explore patient-reported and rheumatologist-reported barriers to virtual care and, in turn, work towards developing shared-decision making guidance for rheumatologist to adopt in e-health situations.
They also took the opportunity to break out into a segment on COVID-19 and shared-decision making, This segment will be separated from the main show soon, available as it's own minisode, as a "360" spin off from our RheumyRounds and COVID-19 & AiArthritis episodes.
View Guide
00:54 - Tiffany welcomes listeners.
01:04 - Tiffany is the CEO of AiArthritis, one of the many patient co-hosts from around the world, and a patient living with non-radiographic axial spondyloarthritis.
1:30 - Tiffany is joined today by Dr. Lisa Zickhur, rheumatologist from Washington University Rheumatology and the school of medicine. Lisa also has an interest in education and helps train fellows, or “doctors in progress.”
2:41 - Currently Lisa is working with Tiffany and AiArthritis on a shared decision making project - especially in the virtual environment, which is the topic revisited today.
4:50 - Tiffany revisits the methodology of the show, explaining there are 6 steps to all the work done at AiArthritis and the talk show episodes fall into Step 2 or Step 5. Community input happens in Step 3, which we also circle back to after Step 5. Step 6 is when we create resources based on all the input.
5:31 - This is a Step 5 episode
5:50 - Lisa explains her experience in shared decision making and teaching rheumatology fellows.
6:46 - Tiffany revisits the first episode where we “put the topic of e-health on the table” after she and fellow patient Co-Host, Deb, attended EULAR 2018.
7:45 - Shout out to Dr. Auralie Najm, who was speaking at EULAR 2018 about e-health, where there was a debate that e-health was still at least a decade away from implementation.
9:01 - E-health is thrust upon us in 2020, around the time shared-decision making builds in popularity.
9:44 - Shout out to Dr. Al Kim, or Dr. Al, or “just Al”, also from Washington University, who also discussed patient-doctor communication in the original RheumyRounds series, which included addressing “Dr. Google”. But with COVID onset, patients stopped coming to office visits with knowledge and instead turned to their doctors for complete guidance.
10;31 - Lisa speaks from the doctor's perspective regarding early COVID challenges.
11:07 - Tiffany and Lisa talk continue discussing how shared decision making has evolved and now “it’s everywhere.” And it’s why it’s so important right now.
12:25 - Doctors aren’t all still great at shared decision making and it’s good practice for patients to learn how it works and how to engage in it.
13:02 - AiArthritis already has several projects, including this new one with Lisa and Washington University, underway. Learn more at www.aiarthritis.org/initiatives or sign up (FREE) for AiArthritis Voices to stay informed of all opportunities we have: www.aiarthritis.org/aiarthritisvoices.
13:46 - They are also creating tools to help teach patients, fa
14:09 - Lisa talks about another project just completed around e-health, which was to take general telehealth competency guidance and revise it to be more meaningful in rheumatology virtual visits (and for use by rheumatology fellows in training). Some were specific to shared decision making. Tiffany was the one patient representative on the panel of twelve.
17:30 - Lisa tells the audience about the new project Washington University is working on with Tiffany from AiArthritis, along with Catherine McCarthy from the Veterans Hospital and Emma Nolan-Thomas who is a medical anthropology student (and person living with Sjogren’s Syndrome), which aims to identify the best shared decision making practices in virtual rheumatology encounters.You can get involved by signing up at www.aiarthritis.org/initiatives.
19:29 - Tiffany further explains a methodology originally developed by AiArthritis, where patients - trained as professional focus group moderators help facilitate the research. This is incorporated into the Washington University project, with Tiffany as one of the moderators.
21:39 - Special shout out to Washington University for their work including patients as partners in their work.
24:39 - How to get involved in the Washington University project. These focus groups are underway. If spots fill up, you can still be part of the conversation with AiArthritis on this topic. Just sign up to learn more about this and our other research projects at www.aiarthritis.org/research.
26:32 - TIffany and Lisa break out to discuss the importance of continued shared-decision making as COVID-19 vaccination recommendations continue to evolve. They specifically cover the topic of the 4th vaccine for persons immunocompromised. This is going to become its own “360” spin off segment under our RheumyRounds series.
38:44 - AiArthritis has created a letter for patients having issues gaining the 4th dose to share with pharmacies. You can find this and other guidance at www.aiarthritis.org/covid19
41:00 - Tiffany and Lisa close out the episode. Tiffany mentions to visit us on social media at @IFAiArthritis all platforms, email us at info@aiarthritis.org, and please support the show with a donation on our website! www.aiarthritis.org/donate.
Find all our projects at www.aiarthritis.org/initiatives and make sure to sign up FOR FREE (all stakeholders) to our AiArthritis Voices program to learn about all our opportunities to be at the table! www.aiarthritis.org/aiarthritisvoices
Other links to information mentioned during this episode:
- American College of Rheumatology (ACR) January 2022 Townhall Meeting Notes: https://bit.ly/ACRTownhallAiArthritis
- Research Effect of Immunosuppression on the Immunogenicity of mRNA Vaccines to SARS-CoV-2, Dr. Al Kim - https://www.acpjournals.org/doi/10.Changing the 4th vaccine from 5 months to 3 months after 3rd: https://www.cnn.com/2022/02/04/health/cdc-immunocompromised-covid-19-vaccine-update/
Changing the World from Your Sofa! In this episode, Tiffany Westrich-Robertson (AiArthritis CEO) and Katie Simons (Senior Programs & Communications Manager) talk about the heart and soul of our organization - the volunteers! Meet five volunteers from around the world - Deb, Katie, and Leslie from the United States, Pooja from India, and Judy from Australia - hear from them just how much they've accomplished by joining our team and the impact they've helped us achieve! Learn more about many of our programs and ways YOU can get involved in 2022! Patient voices and all other stakeholders welcome! Learn more about the following programs mentioned in the episode:
- AiArthritis Voices
- AiArthritis Voices 360
- RheumyRounds
- A Community Team (ACT) - first immunology Innovation in Research winner, Celgene 2015
- A Community Team (ACT) II - utilizing data from atypical patients to justify when it's time to ensure treatment decisions are made by their doctors, who are ethically obligated to treat to the individual needs of patients.
- World AiArthritis Day
- Still's Disease Awareness Day
- Preparing Patients for Precision Medicine
- COVID19 - Actemra Shortage
- COVID19- Shared Decision Making
- Go with Us to Conferences
- NEW IN 2022 - Advocacy/Public Policy Creative Patient-Led Learning!
Sign up to volunteer at aiarthritis.org/volunteer ! Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow. JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
Rant Ahead! Together We Can Make Change
In this episode, AiArthritis CEO - and person living with axial spondyloarthritis - throws a topic on the table that everyone can relate to...ranting.
We all experience situations of frustration, when something we believe in, we want to happen, we wish could be different hits the point where we must vent. Sometimes that vent is to ourselves, other times it's public for all to see. We rant for support, to bring change, to be heard, or to get something off our chest. Regardless of the reason, sometimes it's just necessary.
Tiffany introduces two issues that are directly related to ranting. The first builds on years of wanting for Patient Organizations to be more accepted and involved at American College of Rheumatology (ACR) annual conventions.
Are you affiliated with a Patient Organization - anywhere in the world - part of the rheumatic or musculoskeletal disease community and interested in uniting with other groups so, together, we can work towards more inclusion in future ACR meetings? Then CLICK HERE to sign on. OR, if you are affiliated with a research collaborative group (research institute, databank, government) and would like to sign on to support increased Patient Organization participation in future conferences, you are also invited to sign. SIGNATURES REQUIRED NO LATER THAN DECEMBER 15TH, 2021!
A letter just for patients who want to have a voice in future advancement of a Patient Track at future meetings - this will be available in January 2022!
Then, Tiffany introduces a new initiative at AiArthritis - Caution: Rant Ahead! Realizing there is no where in our community for people affected with AiArthritis diseases to vent privately, we started a venting platform. Submit your rant, which will not be visible to others outside of our organization. Submit anonymous or leave your name and email, it's up to you. Rants submitted may be discussed on future episodes of this show, on social media, or if enough patients rant about the same issue then maybe even a project! Submit your own rant here: https://www.aiarthritis.org/rant Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow. JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
Pathway of Patient Engagement
This week join your patient co-hosts Tiffany Westrich-Robertson, Cheryl Koehn, and Maarten de Wit as they introduce us to the Pathway of Patient Engagement in Rheumatology Research. Tiffany is the founder and CEO of AiArthritis. Cheryl Koehn is the founder and President of Arthritis Consumer Experts - Canada’s largest patient organization. Maarten is the Chairperson for the Study Group for Collaborative Research for EULAR (European Alliance of Associations for Rheumatology).
Tiffany, Cheryl, and Maarten are all leaders of the ACTion Council - an organization dedicated to preserving the past and advancing the future in patient-involved rheumatology research. The ACTion Council consists of stakeholder groups from patient organizations, health charities, coalitions, non-pharmacologic researchers, government agencies/initiated programs, and industry. Between 60 – 75% of those invited to participate have engaged in research collaboration as patient stakeholders.
Today’s episode is about the Pathway of Patient Engagement in Rheumatology Research, the first deliverable produced by the ACTion Council. The purpose of the initial Pathway is to trace the evolution of patient engagement in rheumatology research, including identifying historical milestones, novel “firsts”, and tools. Then, as patient involvement continues to popularize and branch off into different directions, new entries can be added. New entries will be collected and added in the second half of 2021, and the Pathway will be updated bi-annually.
Tune in to this episode to learn why the Pathway is important, how it can be helpful to you as an AiArthritis stakeholder, and how to avoid tokenism when you want to participate as a patient research partner in rheumatology research.
Young and Invisible This week join your recurring patient co-hosts Katie Simons and Deb Constien as they discuss the experience of being diagnosed with arthritis as a juvenile and the importance of differentiating between the different types of AiArthritis diseases. Katie is the Senior Program and Communications Manager for AiArthritis and a patient living with inflammatory arthritis. Deb is a dietitian, an experienced patient advocate and ambassador for the AiArthritis community, and a patient living with inflammatory arthritis. They both discuss the complicated nature of identifying just precisely what their diagnosis is as adults who were originally diagnosed with a juvenile form of arthritis.
This episode will tackle subjects of particular importance to the AiArthritis community such as differentiation of disease types, early intervention, shared decision-making, Stills Disease Awareness, and the experience of living with an invisible illness. Life with an invisible illness can be particularly challenging for children and a
After you listen to this episode, we want to hear from you to keep the conversation going. If you were diagnosed as a young person, are you still using the initial diagnosis? Have you changed the way you describe your condition to others since becoming an adult or since the medical community changed the name of your disease? How do you feel about having an accurate diagnosis or about changing your diagnosis?
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
JOIN TODAY!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!