Patient Engagement in Research Workshop: An initiative for Researcher education

Written by Trudy Flynn, Patient Partner and Tianna Magel, Project and Research Analyst at CIHR-IMHA
Edited by Hetty Mulhall

A recent review found that one of the key reasons researchers participate in patient engagement is to do “better research” (Pratte et al., 2023). Yet there is still insufficient awareness of patient engagement in academia which means that the research community is still falling short when it comes to meaningfully integrating patient perspectives. Less than half (36.5%) of the health researchers surveyed in a Canadian study agreed that patients and the public are being meaningfully engaged in research (Crockett et al., 2019). Begging the question: How can we increase awareness on the importance of meaningfully engaging patient partners in research?

Patient Engagement in research within Canada is not a new phenomenon, and has been defined by the Canadian Institutes of Health Research (CIHR) as patients being “actively engaged in governance, priority setting, developing the research questions, and even performing parts of the research itself” (Canadian Institutes of Health Research, 2019). The value of patient engagement is also not inconsequential and has demonstrated several benefits, including improved clinical and research relevance, continued engagement in care, and facilitation of knowledge translation initiatives (Domecq et al., 2014; Forsythe et al., 2019; McVey et al., 2023; Richards et al., 2024).

To effectively move the dial on patient engagement best practices, and in turn, do “better research”, increased educational initiatives are needed to raise awareness on the value of involving patients, not as participants (e.g., someone signing up to try a new treatment), but as members of a research team.

To address this issue, in collaboration with patient partners and CIHR institutes, we developed virtual and in-person 101 workshops on patient engagement in research. Therefore, the purpose of this blog is threefold: 1) to share our learnings from the workshop and peer review so that other organizations might use these approaches, 2) to flag the need for further education on patient engagement in research, and 3) to highlight the importance of patient partners as co-creators and co-facilitators of the workshop and peer review materials.

This is a long blog post, so we have broken it up into sections to make it easier to read. We have displayed each section in its own collapsible text box with a heading, to make it easier to keep track of where you are reading.