CRAJ Winter 2025

Winter 2025 (Volume 35, Number 4)

Reflecting on My Place in the Rheumatology Community — and Asking You to Do the Same

By Dawn P. Richards

I’m privileged to have been invited to contribute a patient perspective to The Canadian Rheumatology Association Journal (CRAJ). This request gave me space to reflect on some of my other privileges. I am an uninvited settler living in Toronto—the traditional home of the Mississaugas of the Credit, the Anishnabeg, the Haudenosaunee, the Chippewa and the Wendat peoples. I own my own home and hold a PhD from a prestigious institution. I’m a white cis-woman. And, put simply, I’m lucky to be living well with my rheumatoid arthritis (RA). When I was diagnosed with RA nearly 20 years ago, I was working at the Canadian Arthritis Network. There I benefited from my connections in arthritis research and rheumatology—I had access to expert clinicians for a timely diagnosis and evidence-based treatment. These privileges provide me a platform today to reflect, and share my hopes/perspectives with you. As you read, I invite you to reflect on your own positionality in rheumatology and in the broader world.

In writing this article, I’ve thought about things my own positionality has afforded me—even living with inflammatory arthritis. First, living in a large city has helped me access care affiliated with a research institution. I have participated in research, and through research, had treatment options that otherwise wouldn’t have been available. My experience in research has also taught me how patients can contribute as partners in research.¹ As members of the research team, we bring views and perspectives and experiences that complement the learned experiences of others on the team. My professional work now sees me contributing to the research enterprise in Canada and beyond: helping people and organizations to engage patients as partners in research.

My positionality has brought me community through the rheumatology world in Canada and beyond. For a decade I’ve been part of the Steering Committee of the Canadian Arthritis Patient Alliance. I’ve also been a member of the Canadian Rheumatology Association Guidelines Committee, and have contributed to European Alliance of Associations for Rheumatology (EULAR) projects and other global rheumatology initiatives. I have observed a different side of healthcare and pharmaceutical policy in Canada, including all the imperfections and burdens heaped on patients at a time when we are already dealing with so much. I am learning about the inequities in rheumatology care—how for many people care is determined, not by the research evidence, but by their postal code, skin colour, and other socio-demographic factors.^2,3

This article is my way of asking others to consider who is not invited regularly into our spaces. Who is disadvantaged through no fault of their own in the rheumatology world? After 20 years, I am actively taking a step back from telling my story. Instead, I am holding space for others. I am declining invitations and suggesting others in my place. I am helping build capacity and mentoring other patient partners to contribute to research as partners, and to ensure their lived experiences influence research. I am attending fewer conferences and stepping off committees and research teams. This is my way of creating opportunities for new perspectives, different from mine, that aren’t well represented in these spaces.⁴ It doesn’t mean I am leaving the rheumatology community. I’m a member for life thanks to my combination of genes and environment. After two decades in this community, the least I can do to give back is to hold the door open for others.

Acknowledgement: Thanks to Dr. Clare Ardern for editorial review, and to Linda Wilhelm and Laurie Proulx for their reviews as well.

Dawn P. Richards, Patient advocate
Toronto, Ontario

1. Canadian Institutes of Health Research's Definition of Patient and Patient Engagement [cited 2025 October 28]. Available from: http://www.cihr-irsc.gc.ca/e/48413.html.

2. Pianarosa E, Hazlewood GS, Thomas M, et al. Supporting Equity in Rheumatoid Arthritis Outcomes in Canada: Population-specific Factors in Patient-centered Care. J Rheumatol. 2021;48(12):1793-802.

3. Thomas M, Barnabe C, Kleissen T, et al. Rheumatoid Arthritis Care Experiences of Black People Living in Canada: A Qualitative Study to Inform Health Service Improvements. Arthritis Care Res (Hoboken). 2024;76(4):470-85.

4. Abelson J, Canfield C, Leslie M, et al. Understanding patient partnership in health systems: lessons from the Canadian patient partner survey. BMJ Open. 2022;12(9):e061465.