Episode 70: The Future of Shared-Decision Making & E-Health in Rheumatology Starts with YOU! Revisit to the Table

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. 

 

SHOW NOTES

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

 

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