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Study Finds People with Arthritis Participate in Research to Improve Health Issues Beyond Their Own
October 18, 2023 (Vancouver) Patient engagement in research brings the experiences of people living with arthritis to help others in similar situations and improve healthcare systems. Results of a new study show what motivated members of Arthritis Research Canada’s Arthritis Patient Advisory Board (APAB) to participate in research.
Patient experiences of people living with arthritis and chronic conditions touch many aspects of their lives and involve issues that healthcare often has difficulty addressing. This research, which re-examined existing data from a previous study on the lived experiences of 22 members of APAB, found that participants’ motivations stemmed largely from their desire to change their relationship with their disease.
Additionally, when most participants decided to engage in research, they did so without expecting it would help them directly but rather benefit future patients. Scientists in this study coined the term: “Civic Patienthood” to describe the ethical perspective that patient partners in research bring to addressing health problems on a larger scale, one that goes beyond themselves.
“We wanted to do justice to the depth and richness of the experiences of the patient partners we’ve worked with and spoken to,” said Graham MacDonald, who led the study at Arthritis Research Canada. “To do this, we felt we had to get to the root of why people volunteer their time and energy to give their voice to research projects.”
This study also found that supporting patient engagement in research requires infrastructure and resources to bring people together and make their voices heard.
To learn more about this study click here.
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ABOUT ARTHRITIS RESEARCH CANADA:
Arthritis Research Canada is the largest clinical arthritis research institution in North America. Our mission is to transform the lives of people living with arthritis through research and engagement. Arthritis Research Canada’s scientific director, Dr. Diane Lacaille is leading a team of over 100 researchers, trainees and staff whose life-changing research is creating a future where people living with arthritis have the knowledge and tools to triumph over pain and disability. Arthritis Research Canada is now conducting arthritis research from coast to coast with centres in British Columbia, Alberta, Quebec, and Nova Scotia and scientists affiliated with seven major universities: University of British Columbia, Simon Fraser University, University of Calgary, Université Laval, McGill University, Université de Montréal, and Dalhousie University. Arthritis Research Canada is leading research aimed at preventing arthritis, facilitating early diagnosis, finding new and better treatments, and improving quality of life.
For more information or to arrange an interview, please contact:
Victoria Rubio
Marketing and Communications Coordinator
Arthritis Research Canada
604-207-4010 or vrubio@arthritisresearch.ca
