There is growing evidence to support the value of patient engagement in research and healthcare activities. Case studies from drug and device development, academic research, and other healthcare sectors cite the impact of engaging expert patient partners in the design, conduct, and dissemination of research, discovery, and delivery initiatives. Encouraged and facilitated by entities like the Patient-Centered Outcomes Research Institute (PCORI), academic and clinical professional societies are beginning to adopt more patient-engaged strategies as well, like the inclusion of patient representatives at annual meetings and scientific conferences. In 2017, the Arthritis Foundation is partnering with the American College of Rheumatology (ACR) to pilot an Arthritis Foundation Patient Representative program (#AFPatientReps), bringing a cadre of ten highly involved, engaged patients to attend and participate in #ACR17, the ACR/ARHP annual meeting.
In addition to attending sessions at ACR, these AF Patient Reps will participate in a number of meetings and gatherings where they’ll have the opportunity to interact with clinicians and researchers to share insights on the value and practice of patient engagement in research. The Patient Reps attending have a wide array of patient engagement experience, ranging from those who serve as expert patient partners on research studies, to a patient panelist at an FDA Patient-Focused Drug Development meeting, to patient participants on drug discovery advisory boards.
One of our San Diego Patient Reps, Stacy Courtnay, who lives in Atlanta, Georgia, was diagnosed with Rheumatoid Arthritis at the age of 25. She has experienced first-hand the challenges of this disease but now reports that she is doing well and is able to enjoy time with her husband and ten-year old son. Stacy credits modern medicine—and her healthy diet and exercise—for her keeping her relatively pain free. Stacy is currently serving as an expert patient representative on the Arthritis Foundation’s Rheumatology Learning Health System project. Through this project, she has been able to turn a negative thing—her diagnosis—into an opportunity to contribute to the healthcare and research enterprise. Stacy says that “it is an honor to represent patients struggling with rheumatic diseases and to help guide researchers and clinicians to develop a collaborative environment, helping patients have the best health possible.”
Another of our Patient Reps, Taylor Gray, is from Farmington Hills, Michigan and is currently a sophomore at Michigan State University. Taylor was diagnosed with Juvenile Arthritis at just 16 months of age but has found inspiration to fight back through her and her family’s involvement with the Arthritis Foundation. Taylor is involved in the joint ACR/Arthritis Foundation initiative to bring the patient voice into the clinical practice guideline development process. She sees patient engagement in research activities as a way to take charge, noting that “it is such an important factor when it comes to research because it is up to us, as patients, to use our voices and fight for the care that we need.”
This dynamic and sophisticated group of Patient Reps will help to publicize the value and promise of patient engagement and even help establish “next steps” for those clinicians and researchers seeking patient engagement strategies and opportunities. We look forward to a busy, informative, and highly engaged—patient engaged—meeting!
Visit our booth at #ACR17 to learn more about our patient engagement efforts, and be sure to browse our online tools and resources to get the tools you need to conquer arthritis!