Episode 29 Special AUTO Ball Series: Conferences and E-Health

This week join your patient co-hosts Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis and Deb Majcher Constien, AiArthritis volunteer and patient advocate, as they discuss the importance of AiArthritis leaders attending conferences. At EULAR (European League Against Rheumatism) Congress in 2019, Tiffany and Deb attended a session on the existing efforts to advance e-health so we could reach more rheumatic patients and, in turn, improve their health.

They are joined by Aurelie Najm, rheumatology researcher with EULAR and OMERACT (Outcome Measures in Rheumatology). Aurelie was a panelist at the EULAR e-health session and previously made another guest appearance on AiArthritis Voices 360 to discuss obtaining patient consent for participation in clinical research. Check out Episode 9 “Changing The World With Your Knee” for more information on Aurelie’s clinical research and how you can get involved in that project.

In this episode, Tiffany, Deb, and Aurelie will discuss the ongoing efforts of EULAR and AiArthritis to involve the patient voice in the development of new e-health apps and the variety of ways these apps could be utilized by both patients and clinicians to improve treatment outcomes. Aurelie will also explain the value of e-health apps in light of the COVID-19 pandemic. Stay tuned to the end of the episode for information on how you can help researchers develop the next generation of e-health apps to benefit the AiArthritis community. 

 

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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).

 

Show Notes: Episode 29  ”Conferences and E-Health”

 

00:52 - Tiffany welcome listeners and co-host, Deb Constein

3:30 - AiArthritis is transitioning away from the old IFAA acronym to make it more clear what the mission of the organization is to outsiders as we move into more spaces in the medical community

4:44 - Today’s episode is about attending conferences like ACR (American College of Rheumatology) or EULAR (European League Against Rheumatism)

5:27 - Deb was diagnosed with RA 37 years ago and is a registered dietitian so research and conferences are a passion for her

5:50 - Deb explains what she and Tiffany do at conferences 

7:44 - Deb gives an overview of some of the things she has learned from conferences like a session on e-health 

12:42 - Tiffany and Deb are joined by Aurelie to discuss her panel presentation from EULAR on e-health 

13:18 - Aurelie says that researchers realized there were a plethora of health apps, but none of them provided adequate information on how they could actually help patients or clinicians 

14:13 - Researchers discovered that rheumatology lacked the quantity and quality of health apps compared to cardiology or endocrinology and that patient voices were not included in the development process for e-health apps

15:28 - Half of panel respondents who had used e-health apps reported that they were not very useful 

16:00 - EULAR issued recommendations on how e-health apps should be developed to include patients in the development process and to secure patient data

18:42 - Aurelie discusses the stark differences between how researchers were envisioning using e-health apps before COVID-19 and how they are trying to use them now

22:43 - Aurelie explains some of the recommendations from EULAR for developing e-health apps

25:25 - Aurelie breaks down the two main barriers to developing and implementing useful e-health apps

29:43 - Deb shares responses she received from listeners about which e-health apps they use and like

30:29 - Arthritis Power is one app that many respondents enjoyed using

31:25 - Catch My Pain is another app used for tracking symptoms that was recommended

32:44 - Patients recommend apps when they have a direct benefit to their health

35:43 - EULAR findings are consistent with the responses Deb and Tiffany collected about patient experiences with e-health apps

37:00 - Aurelie expects the field of e-health to develop rapidly in response to COVID-19 needs

39:33 - AiArthritis wants to hear from you about what existing e-health apps you like to use and what you would like see developed in a new app

41:14 - Tiffany thanks Aurelie and Deb for participating in the conversation on e-health and conferences

42:30 - AiArthritis lost all of its sponsors when the in-person AUTO Ball was cancelled due to COVID-19, so we are asking all of our listeners to please consider donating any amount to support the organization so that we can continue working for you