Patient engagement in research occurs when patients meaningfully and actively collaborate in the research process – from setting research priorities and research questions to designing a study and disseminating results. Involving patients in research can ensure that research projects are carried out with patient priorities in mind. Although frameworks and models exist to guide researchers partnering with patients in the research process, most are created by researchers for researchers. In contrast, limited resources are available to facilitate patient engagement in research from the perspectives of patients.
The About Us project builds on the cumulative work and experiences of Arthritis Research Canada’s (ARC) Arthritis Patient Advisory Board (APAB). Founded in British Columbia by ARC, APAB is comprised of volunteer advocates with arthritis who bring their experiences and arthritis knowledge to health research at ARC. Since its inception in 2001, APAB has been involved in over 45 research studies.
To ensure the sustainability of APAB, other patient advisory boards, as well as various patient engagement initiatives, this project aims to address this limited resources by developing a comprehensive, user-friendly manual to support meaningful patient engagement in research from the patient perspective. The About Us manual will be developed from interviews with APAB members, exploring their experiences of engaging in ARC research. From the interviews, we can understand how patients conceptualize patient engagement in research, as well as understand the barriers and facilitators of engaging in research projects.
Eligible participants are past and present APAB members who have been engaged in research led by an ARC scientist. Participants will receive an email invitation letter to participate in the interview. We will co-own the data with APAB collaborators. Also, we will co-create the interview guide, as well as the manual alongside APAB collaborators.
Funded by The Vancouver Foundation
Reports from this project include:
It is about us! Patient engagement in health research. September 2016
Scientific posters presented about this project include:
Achieving Balance and Diversity in Patient Engagement in Research: Perspectives from Patients Presented at the Canadian Rheumatology Association Annual Meeting, Vancouver, February 2018
Partnering in Research: Maximizing Benefits and Minimizing Risks in Patient-Researcher Relationships Presented at the American College of Rheumatology Annual Scientific Meeting, San Diego, November 2017
It IS About Us! Patient Engagement in Health Research Presented at the Canadian Institutes of Health Research Inflammation in Chronic Disease Networking Meeting, Quebec City, February 2017
Scientific papers published about this study include:
“Adding Another Spinning Plate to an Already Busy Life”. Benefits and Risks in Patient Partner-Researcher Relationships: A Qualitative Study of Patient Partners’ Experiences in a Canadian Health Research Setting. Leese J, Macdonald GG, Kerr S, Gulka L, Hoens AM, Lum W, Tran BC, Townsend A, Li LC. BMJ Open. 2018;8:e022154. doi: 10.1136/bmjopen-2018-022154
Linda Li, Principal Investigator, University of British Columbia
Alison Hoens, Co-Chair, Arthritis Research Canada’s Arthritis Patient Advisory Board
Lianne Gulka, Co-Chair, Arthritis Research Canada’s Arthritis Patient Advisory Board
Sheila Kerr, Co-Chair, Arthritis Research Canada’s Arthritis Patient Advisory Board
Wendy Lum, Member, Arthritis Research Canada’s Arthritis Patient Advisory Board
Bao Chau Tran, MSc
Graham MacDonald, Research Assistant, Arthritis Research Canada
Jenny Leese, PhD Student, University of British Columbia