Background/Purpose: In April of 2015 I was a 29 year–old single mom diagnosed with rheumatoid arthritis (RA). RA wasn’t unknown to me; my aunt who battled RA forty years prior to me passed away the same week as my diagnosis. I felt lost, alone and afraid. Soon after I was also diagnosed with osteoarthritis (OA), fibromyalgia, anxiety and depression. Out of sorts and out of shape, I wanted to take charge of my health but with arthritis I found it difficult to know what would really help and to find information I needed. I decided to join Arthritis Research Canada’s Arthritis Patient Advisory Board (APAB) in 2018 to learn more about arthritis research and find answers to my concerns as a person living with RA.

Intervention: After joining the patient board for Arthritis Research Canada, I partnered with researchers whose focus was on how to get RA patients to be more active, a topic of particular interest to me. Two studies that changed my life were I-START (Improving Strength Training and Tailoring among people with Rheumatoid ARThritis) and OPERAS (On-demand Program to EmpoweR Active Self-management) which used a Fitbit and app designed to monitor RA symptoms.

Being involved with these studies gave me access to physiotherapists and kinesiologists who helped answer my questions and concerns about living with RA and wanting to exercise in spite of barriers like fatigue, pain and anxiety. Not only was I able to participate in these studies to understand how exercise would impact my RA, but I was also part of the planning, recruitment, data collection, analysis, and dissemination of findings for these projects.

Maintenance: I have now been on Arthritis Research Canada’s Arthritis Patient Advisory Board (APAB) for 5 years and am recognized as a leader within rheumatology research. I continue to attend the monthly meetings of the patient board and help welcome new representatives as they join. By further expanding my participation in research, for example on mental health, occupational therapy, and patient engagement in research, I am able to continuously learn and grow. I also am able to share the benefits by creating quality content for the larger arthritis patient community and general public. I use my social media channels to help promote research recruitment, dissemination, and patient education.

Quality of Life: Chronic illness is bumpy; medications only go so far. Exercise has been one of my main self-management skills navigating life with arthritis. Thanks to these studies and my participation in them, I am confident in my ability to exercise safely without exacerbating the underlying RA disease, and I have seen the benefits to my overall health, like losing 60 pounds, improving my strength, and reducing my RA symptoms.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/from-devastated-to-empowered-how-patient-engagement-in-research-changes-lives/