Episode 39: Patient Engagement in Research: the OMERACT Experience

This week Tiffany (axial spondyloarthritis) and Deb (rheumatoid arthritis) talk about their experiences - and which could be YOUR experiences - having your voice count in research initiatives.    New primary outcomes (endpoints that should be measured) in rheumatology trials where shared-decision making between doctors and patients are required...and patients were part of this historic decision. This was part of the international, collaborative of rheumatology stakeholders - OMERACT (Outcome Measures in Rheumatology).... and Deb and Tiffany were there and they want to tell you all about it!   Learn more about OMERACT.   AiArthritis projects referenced in this episode: Preparing Patients for Precision Medicine Trials (which includes development of a Shared Decision Making Tool). Learn more. Changing the World with Your Knee - our collaboration with researchers on the OMERACT Synovial Tissue group where we facilitate focus groups with patients to learn what they need to understand about these studies, which include participating in voluntary knee biopsies, in order to want to be part of the study. Learn more.   Pull up a seat - it's your turn at the table! AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis (AiArthritis).   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 ([email protected]).   Donate Today!  Thank you for your continued support of this show. If you would like to give to our cause, so all patients globally always have a seat "at the table", your gift would be appreciated.  Give today!