Conference Follow Up: EULAR 2019 e-Health Panelist - Where is e-health research now that COVID-19 has forced its use?

Special AUTO Ball Series

AUTO Ball Special Series Episode 3

AiArthritis Voices 360 Full Episode 30

Air Date: May 31, 2020

Originally Aired on Facebook May 18th, 2020

Between May 16 - 20th, we took our AiArthritis Voices 360 Talk Show LIVE, to help teach more people who we are, what we do, and how we impact the lives of those affected by AiArthritis Diseases while honoring the 450 million people worldwide living with our diseases. It also served as the starting line for our 2020 fundraising efforts. 

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In this episode, Event Host, AiArthritis CEO and person living with AiArthritis diseases, Tiffany Westrich-Robertson, is joined by patient Co-Host Deb Majcher Constien from International Foundation for Autoimmune & Autoinflammatory Arthritis .  They continue their conversation on the importance of International Foundation for Autoimmune & Autoinflammatory Arthritis leaders attending conferences. At EULAR - European League Against Rheumatism congress in Madrid, Spain (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.


Aurelie Najm, rheumatology researcher with EULAR and OMERACT (Outcome Measures in Rheumatology) was a panelist in this session. As we met her already through OMERACT, and since began working with her on another project (Change the World with Your Knee - Synovial Tissue Studies), we invited her to come to our Talk Show and discuss updates to e-Health, especially now in the time of COVID-19.


Existing initiatives related to this episode include:

 

 


Learn more about the people "at the table" and other associated AiArthritis Voices 360 episodes below. 



LISTEN TO THE EPISODE THEN BE SURE TO TAKE A SEAT AT THE TABLE BY JOINING THE CONVERSATION! 

(Scroll down the page to learn how!)

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!

Get Involved in this Initiative

If you are a rheumatology professional or organization who would like to get involved in our efforts to educate the public, practitioners, and hospitals about the different types of arthritis, please contact tiffany@aiarthritis.org. 

Pull up your seat at the table

Now it's YOUR TURN to join the conversation!

What do you think about this episode?

We want to know what you think! By continuing the conversation with your opinions and perspectives - we all get a better understanding of the problems facing our community.  Better yet, through these conversations we can start working and developing solutions.


We mean it when say 360. Not only do we want your input anytime and anywhere, but we also are eager to see where the conversation will take us. So please, "pull up a seat at the table" and let's start talking!


Email us at podcast@aiarthritis.org, message us on social media (find us by searching for @IFAiArthritis)

Continue the conversation in our own AiArthritis Voices 360 Talk Show Group!

Pull up a seat and join the conversation on the topic from today and past episodes. You may even get an opportunity to talk directly with the co-hosts and any episode guests!

The AiArthritis Voices Program

Our AiArthritis Voices 360 Talk Show is just a piece of larger program - the AiArthritis Voices Program.


AiArthritis Voices is our 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.


If you want to get more involved, and see more of the opportunities we have for you (and all stakeholders) please check out the AiArthritis Voices Program. Unite with others around the world to talk, learn, and connect. 

Join AiArthritis Voices

Show Notes:

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



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!



Your Co-Hosts & Guests: Who is at the table this episode?

Tiffany Westrich-Robertson

Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues. For the last several years, she has continued her education in research, including becoming a professional focus group moderator, and translated this experience at our organization to develop award-winning, innovative projects that are taking patient engagement to next levels. 


Tiffany has served on several advisory boards, including those to advance patient voices in policy, clinical trials, and precision medicine. In addition to reviewing grants at PCORI and for the Department of Defense, she was the sole patient grant reviewer for the National Institute of Arthritis and Musculoskeletal and Skin diseases from 2015-2018. She currently participates as a Patient Research Partner for OMERACT (Outcome Measures in Rheumatology), co-leads our organizations' international effort to advance patient voices in rheumatology research (the ACTion Council) and has dedicated her professional career to developing other patients to utilize their voices to impact the future of millions.


Deb Constien

Deb has been living with Rheumatoid Arthritis for three decades and while she has experienced disability from it, she never lets her disease dominate how powerful her voice can be. 


She has been a key Representative (high level volunteer) for our organization for several years and often takes a leadership role in many programs and mission initiatives, including attending meetings as the voice of the organization. She is also a Platinum Ambassador at the Arthritis Foundation, as well as various other nonprofits, and has formerly and currently used her voice as a Patient Research Partner (Wisconsin Research and Education Network (WREN), OMERACT, Arthritis Power through CreakyJoints and more). She has represented her state of Wisconsin on Capitol Hill and at a local multiples times, and most recently was a key player in helping to pass step therapy legislation in her state.

Guest Co-Host: Dr. Aurélie Najm, MD, MSc, PhD applicant

Dr. Aurélie Najm is a clinician scientist in Rheumatology. She has a major interest in the synovial tissue research field, and is currently the co-chair of the EUropean League Against Rheumatism (EULAR) synovitis study group. She has contributed to many projects aiming at developing the synovial biopsy techniques or the standardization of synovial tissue analysis in clinical practice and research, including the OMERACT (Outcome Measurements in Rheumatology) Synovial Tissue in Randomized Clinical Trials working group. 

The possibility of designing patients tailored therapy based on many predictive features including tissue multidimensional analysis is among her main interests.

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