Volunteer offers personal experience and scientific knowledge

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Jennifer Boyle not only understands the pain of living with arthritis—intimately—but she is also familiar with the pain experienced while applying for research grants.

That’s because Jennifer is a trained researcher with a PhD in cartilage tissue engineering, who is living with psoriatic arthritis. She also gives back, putting those research skills to use, volunteering hundreds of hours to The Arthritis Society’s Ontario Division and to the arthritis community at large. “I love volunteering – I love being able to give back to the community I am actually part of,” she says.

When she was a teenager, her doctor said her hand pains were “just growing pains.” Two years later she was diagnosed with rheumatoid arthritis. Then, after developing a skin rash, her diagnosis was changed to psoriatic arthritis. Twenty-three years later, Jennifer is not only living well with arthritis, she is the recipient of the 2013 Ontario Volunteer Impact Award from The Arthritis Society – Ontario Division, and a key member of the Consumer (Patient) Advisory Committee for the Ontario Best Practices Research Initiative (OBRI).

This collaborative research organization was developed to improve the treatment and outcomes of Ontarians living with rheumatoid arthritis through gathering long-term information on therapies, clinical practice and healthcare utilization in the real world.

For Jennifer, her diagnosis triggered a journey into the field of arthritis research. But after she earned her PhD at the University of Toronto, Jennifer developed a rare medical condition that prevented her from returning to her scientific work. So she started volunteering with The Arthritis Society in 2008, where she was able to work at her own pace on projects like literature reviews, peer-to-peer mentoring, and research presentations. She has also summarized the evaluations of The Society’s annual Training Program in the Evaluation of Inflammatory Arthritis; its Getting a Grip on Arthritis workshop for health care professionals, as well as the Ontario Rheumatology Association’s workshops. Her work significantly expands the capacity of the research team in The Society’s Ontario office in terms of program evaluation.

Jennifer is an integral part of the OBRI Consumer Advisory Committee, which held its first patient information session in October. “We had a patient-focused day to help demystify the process – to let them know what happens with their data and how that in turn helps the community,” she says referring to the data that patients voluntarily contribute to the OBRI for the organization’s population-based research to improve treatment outcomes for people with arthritis.

The OBRI exists through the cooperative efforts of patients, researchers, rheumatologists and allied health care professionals: including nearly 60 rheumatologists and 3,000 rheumatoid arthritis patients in the province of Ontario, as well as The Arthritis Society as a close partner. Founded in 2005, OBRI partners with several other organizations; The Best Medicines Coalition, The Ontario Rheumatology Association, The Canadian Rheumatology Association, Canadian Arthritis Patient Alliance, Institute of Clinical Evaluative Sciences (ICES),Canadian Spondylitis Association, and the government.

Jennifer spreads her time across many organizations, performing research- and patient-focused volunteer work. “Volunteering, for me, is all about advancing care – finding out what works best to treat people with arthritis,” she says.

“I’m volunteering to ensure that the funding is there to further this important research, and to let other patients know that they are not alone. Arthritis can be very isolating,” Jennifer says.

And, Jennifer has made an impact – and some great connections – as one of the most outstanding volunteers at The Arthritis Society, helping to serve the 1.8 million Ontarians living with arthritis, through a variety of educational programs. One of those Ontario-specific programs is the Arthritis Research and Education Program (AREP), which provides education and also direct OHIP-covered therapy services. Jennifer recently used AREP to access an Occupational Therapist who fitted her with hand splints.

Jennifer’s experience and knowledge have been a powerful aid in facilitating the projects undertaken by OBRI and The Arthritis Society, and help to ensure that people living with arthritis are front and centre in this community of care.