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It IS About Us
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Scientific Study Title:
It IS About Us
Research Category
Tags
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Linda Li
Senior Scientist, Implementation Science, BSc(PT), MSc, PhD, FCAHS
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Jenny Leese
MA, PhD, Post-Doctoral Fellow
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Alison Hoens
Knowledge Broker, MSc, BScPT

Why do this research?

Reason For 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.

Methodology

Execution of Research

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.

Related Publications

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.

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