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  • What We've Learned
It IS About Us
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Why did we 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 did we do?

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 (https://arthritisresearch.ca/our-team/arthritis-patient-advisory-board).

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.

The Research Team

Co-Principal Investigators

  • Linda Li, (https://arthritisresearch.ca/linda-li/) BSc(PT), MSc, PhD, FCAHS, Senior Scientist, Implementation Science, Arthritis Research Canada (University of British Columbia)
  • Jenny Leese , MA, PhD, Post-Doctoral Fellow, Arthritis Research Canada Trainee (University of British Columbia)

Knowledge User Co-Principal Investigator

  • Sheila Kerr, Member, Arthritis Patient Advisory Board
  • Alison Hoens , BScPT, MSc, Knowledge Broker, Arthritis Research Canada (University of British Columbia)
  • 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

Who Funded This 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.

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