The Arthritis Newsletter

Spring 2016

From Volunteer to Research Trainee

By 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.

That being said, academia is very demanding and I have a long road ahead of me. I’m going to graduate with my Master’s degree this year, after which I’ll start my PhD, and then I’ll have to complete a post-doctoral fellowship. Then I can start looking for a permanent position at a research institution.

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.

I’m also mentored by Dr. Antonio Aviña-Zubieta and Dr. Mary De Vera. They’re both such innovators in health research – it’s very inspiring. I’ve also recently started to do some work alongside Dr. Linda Li, Canada’s leading expert on patient-oriented knowledge translation. I’m excited to apply what I learn from her to my own research program someday. Lastly, I have many wonderful mentors from APAB, including Lianne Gulka (my lupus “big sister”), Sheila Kerr, Nadia Prestley, Gordon Whitehead, and Alison Hoens. Over the years, they have shown me that there is nothing that cannot be conquered.

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.

How are you involved in the INFORMED research study?

I am a co-investigator on the INFORMED study, meaning that the funding agency recognizes me as a formal member of the research team. This means that I share responsibility for the conduct of the study as well as providing my specific expertise when needed by Dr. Mary De Vera (the study’s Principal Investigator).

What has it been like to contribute to INFORMED?

Working as part of the INFORMED team has been incredibly rewarding, both professionally and personally. Dr. De Vera is always very open to hearing my perspective as a patient and she works hard to make sure my ideas are reflected in our work. For example, she invited me to help design the topic guide for the INFORMED focus groups. Together, we did a lot of brainstorming and came up with a product that was so valuable in guiding our data collection – to me, that’s true patient collaboration.

Representing Young Adults with Arthritis

You bring a young adult perspective to APAB. Is that challenging? Do you believe there is a role for you?

There’s definitely a role for me. I’m very passionate about raising awareness that arthritis is not just an “old person disease” and joining APAB as a young adult gave me the opportunity to do exactly that. For example, shortly after joining the newsletter committee, I started a column called “Arthritis Under 30” where I wrote about topics like attending university, going away for spring break, and eating well on a student budget – all through the lens of somebody living with rheumatic disease. I also discussed various resources available to those living with a chronic condition, such as scholarship opportunities.

Engaging Patients in Research

What areas are you researching now?

My current research focuses primarily on gout. We don’t have much data on the burden of gout in Canada, so a lot of my early work has focused on laying that foundation using administrative data. I am also interested in a variety of other topics in gout research, including understanding the long-term impacts of commonly used gout medications, as well as the study of innovative models of patient care across different health systems.

Do you think it’s important to include the patient perspective in this research? If so, how will you involve patients?

It’s essential! I hope to continue to work with APAB as well as other patient groups, both nationally and internationally. The INFORMED study has also given me a foundation in qualitative research methods, which I think is another great way to capture the opinions and priorities of patients from community to inform future research.

What advice do you have for other patients who want to get involved in research?

ARC has many opportunities for participating in research. Each newsletter updates the studies that are currently recruiting patients. Who knows where the journey will take you. To read more about current research going on at ARC please visit ARC’s current research page.

The Arthritis Newsletter

From Volunteer to Research Trainee

Involvement in the INFORMED Study

Representing Young Adults with Arthritis

Engaging Patients in Research

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