Dr. Paul Fortin of Laval, Quebec, was appointed an ARC Scientist by the ARC Board in December of 2011. Thus began his journey to build Arthrite-Recherche Canada, centered at Laval University. Dr. Fortin is a rheumatologist with a distinguished career as a scientist. He has pioneered research on several diseases, but particularly on Systemic Lupus Erythematosis (SLE or lupus). He currently holds the SARDs Canada Research Chair, a seven-year position investigating scleroderma, lupus, dermato/polymyositis and Sjogren’s syndrome. Dr. Fortin is clearly a pioneer in lupus research in Canada, having headed up the Canadian Network for Improved Outcomes in Systemic Lupus Erythematosus (CANIOS), the pan-Canadian research team devoted exclusively to lupus research.

Dr. Fortin has a unique opportunity to advance the genetic understanding of rheumatic disease, as the population in his region is very homogenous, tending to stay in the area for generations. New models of care will be under consideration as there are just 12 rheumatologists serving a population of approximately 1.8 million people in the Laval region. In fact, 1300 patients are currently on the wait list to see a rheumatologist, which is a stimulus to find innovative solutions to providing quality care for those with arthritis.

CAB member Lianne Gulka has been involved with Lupus-related activities and research for 13 years through the BC Lupus Society and has brought this wealth of experience to her work at CAB and ARC. Over this period she has witnessed Dr. Fortin’s “rock-star” contribution to lupus research, and heard Dr. Fortin speak passionately about lupus research and clinical practice.

Dr. Fortin met with ARC Consumer Advisory Board (CAB) members Pam Monte, Lianne Gulka, and Sheila Kerr in March 2012 to discuss his vision for the Arthrite-Recherche Canada and to seek input in his early planning stages about the inclusion of consumers/patients in the process of research.

The CAB members explained their current volunteer roles and the road to the development of “expert consumers”. CAB members have been involved in research from inception through to dissemination, bringing the patient voice into the work. The discussion included:

•  Participating in research by bringing the patient perspective to research studies.
•  Writing plain language summaries in order to bring the research results to the public. These summaries are posted on the ARC website.
•  Writing a quarterly newsletter, The Arthritis Newsletter, for consumers about arthritis research and including stories about living with arthritis.
•  Using the newsletter, several social media platforms, and the website as their communication tools.
•  Hosting community educational events.

The unique role “expert consumers” play is having the insight of living with a disease and marrying it with the ability to engage with researchers and share this perspective with them. CAB consumers are mentored to understand the work of scientists, to become current with the current state of arthritis research, to cast research findings into “user-friendly” language, and to create useful ways to share research outcomes with the public. After our meeting, Dr. Fortin sent a message saying: “Next time I contact you, I hope it will be to announce who will be on our CAB in Quebec”.