Disease Management: Recent Episodes

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AiArthritis Voices 360 Main, Full Episode 71

Air Date: March 6, 2022

This episode is a Step 5 - a revisit to the table - as outlined in our 6 Step Patient-Led Problem Solving Process.

A revisit to the table with Deb Constien, Estela Mata, and Tiffany Westrich-Robertson as they continue discussing the dynamics of support - including the 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!

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AiArthritis Voices 360 Main, Full Episode 70

Air Date: February 6, 2022

This episode is Step 2 – the first time putting it on the table – as outlined in our 6-Step Patient-Led Problem Solving Process.

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 rheumatologists 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 its own minisode, as a "360" spin-off from our RheumyRounds and COVID-19 & AiArthritis episodes.

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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

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AiArthritis Voices 360 Full Episode 68

Air Date: December 5, 2021

This episode is Step 2 – the first time putting it on the table – as outlined in our 6-Step Patient-Led Problem Solving Process.

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 Patient Organizations to be more accepted and involved at the 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 ARE REQUIRED NO LATER THAN DECEMBER 15TH, 2021!

A letter just for patients who want to have a voice in the 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 nowhere 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 anonymously 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!