The Arthritis NewsletterSpring 2016
From Volunteer to Research TraineeBy Sheila Kerr
Over the past three years we have watched Sharan Rai evolve from a patient volunteer attending the Arthritis Patient Advisory Board (APAB) meetings to an Arthritis Research Canada (ARC) Trainee presenting her work. She is a champion for bringing the patient voice into the many research projects at ARC, from inception of an idea to dissemination of results and supporting other young adults with arthritis.
Sharan, when did you join APAB?
I joined APAB in the summer of 2012.
What made you join APAB? Did you already have the idea to become a researcher?
Not at all – that’s why joining APAB was life-changing for me! When I first joined APAB (during the summer before my senior year of university), I was looking for health and research-related extra-curricular activities to help my application to medical school. After I finished my undergraduate degree, I was very fortunate to be offered a position as a Research Assistant at ARC under the supervision of Dr. Hyon Choi. It was this position, combined with my experiences as a member of APAB that ultimately led me to pursue a career in health research.
What was your journey like from patient to researcher?
It’s been very rewarding – I really enjoy what I do. I think it’s an immense privilege to be able to ask research questions and have the resources and capacity to actually answer them.
Do you have mentors throughout this process?
Yes. I’m very grateful to be surrounded by so many supportive individuals at ARC. My primary supervisor is Dr. Hyon Choi, a world-renowned clinician-scientist whose research has informed much of what we know about gout today. To speak candidly, he accepts nothing less than everything you have to give; because of that, I’ve experienced many successes since joining his research team.
What skills and experiences at APAB did you gain that have helped your research training?
APAB fosters a very inclusive and supportive environment, which gave me the opportunity to contribute to a number of different projects and explore my interests. One of the first initiatives I got involved in was The Arthritis Newsletter (APAB’s quarterly electronic newsletter that is written by patients for patients). This reinforced how much I love writing and gave me a basis for communicating health research findings to the public.
Involvement in the INFORMED Study
What is the INFORMED study?
The INFORMED study is a qualitative research study that aims to understand patient perspectives on taking medications. There is a growing problem of “medication non-adherence” (a fancy way of saying “not taking medications as prescribed”) among patients with inflammatory arthritis, which can lead to poor health outcomes. Unfortunately, prior work aimed at improving this problem has generally been unsuccessful – we think this is primarily because the patient perspective was not incorporated into the research. Thus, we are using focus groups to better understand patients’ views and opinions on taking their medications, which will hopefully lead to effective strategies targeting this problem in the future.
Representing Young Adults with Arthritis
Engaging Patients in Research