It IS About Us: From the Patient Perspective, how can Patient Engagement in Research be supported?
A report of preliminary findings was released in September 2016. To access, please click here.
Co-Principal Investigators:
Linda Li, Professor, Physical Therapy, University of British Columbia
Jenny Leese, PhD Student, Physical Therapy, University of British Columbia
Knowledge User Co-Principal Investigator:
Sheila Kerr, Member, Arthritis Patient Advisory Board
Study end date:
We anticipate that we will disseminate findings and resources by Summer 2017.
Why do this research?
Patient engagement in health research occurs when patients are actively involved in the research process in ways that are meaningful to them. At its heart stands the belief that people affected by research have a right to a voice in what and how research is undertaken, if they choose.
Support for patient engagement in research continues to grow. The compelling rationale is that, by engaging in research, patients can improve the quality of research, and thereby better inform the healthcare decisions of patients, health professionals and policymakers.
Little is known about how patient engagement in research works best in practice and what difference it makes. The majority of resources available to support patient engagement in research have largely been developed by researchers for researchers and patients.
If meaningful patient engagement is to be achieved, resources are needed to guide patients, researchers and research organizations in a practice of patient engagement in research that is based on in-depth understanding of patients’ perspectives.
What will be done?
The It IS About Us project is jointly designed by Arthritis Research Canada’s Arthritis Patient Advisory Board (APAB) and health researchers who have experience in engaging with patients in research.
Founded in 2001, APAB is a diverse group of volunteer advocates with arthritis who bring their experience and arthritis knowledge to research decision-making at Arthritis Research Canada. For more information about APAB, please click here.
We conducted in-depth interviews with 22 APAB members (past and present) to gain a detailed understanding of 1) their views and experiences of patient engagement in research, and 2) the barriers and facilitators to patient engagement in research from their perspectives.
Analysis of the perspectives shared by participants is ongoing. Based on our findings, we will develop user-friendly resources for patients, researchers, and research organizations to support patient engagement in research.
Who is funding the research?
Arthritis Research Canada is pleased to acknowledge the Vancouver Foundation for providing the necessary funding to make possible the It IS About Us resources. Arthritis Research Canada extends our heartfelt thanks to the Vancouver Foundation for their support of these important research resources.
Who is on the research team?
Alison Hoens, Knowledge User, Co-Chair, Arthritis Patient Advisory Board
Lianne Gulka, Knowledge User, Co-Chair, Arthritis Patient Advisory Board
Wendy Lum, Knowledge User, Member, Arthritis Patient Advisory Board
Bao Chau Tran, MSc, Co-Investigator
Graham MacDonald, Research Assistant, Arthritis Research Canada
Publication
Leese J, Macdonald G1, Kerr S, Gulka L, Hoens AM, Lum W, Tran BC, Townsend AF2, Li LC. ‘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. BMJ Open. doi: 10.1136/bmjopen-2018-022154. To access the publication, please click here.
