Trudy Flynn - Dalhousie University
Tianna Magel, Canadian Institutes of Health Research Institute of Musculoskeletal Health and Arthritis
Trudy Flynn, Fibromyalgia Association Canada
Karen T.Y.Tang, Dalhousie University
Tucker Bottomley, Canadian Institutes of Health Research Institute of Genetics
Cassie Bruhm, Canadian Institutes of Health Research Institute of Human Development, Child and Youth Health Youth Advisory Council
Jillian Banfield, Canadian Institutes of Health Research Institute of Genetics
Hetty Mulhall, Canadian Institutes of Health Research Institute of Musculoskeletal Health and Arthritis
Dawn Richards, Canadian Institutes of Health Research Institute of Musculoskeletal Health and Arthritis
Isabel Jordan, Patient Partner
Introduction Patient Engagement is 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). Patient engagement is still a relatively new approach to research so there is often a lack of awareness on how to meaningfully engage patient partners on research teams and the potential benefits of doing so. Therefore, patient partners and three institutes within CIHR co-created and co-delivered virtual and in-person “101” workshops on patient engagement in research. The goal was to increase awareness on the importance of engaging patient partners in research, and how to do so meaningfully.
Methods Six patient partners, 1 Patient Engagement Facilitator, and 3 staff members of CIHR Institutes co-developed and co-delivered two educational ‘101’ workshops for researchers and trainees on Patient Engagement in Research in Halifax, Canada in June 2024. A panel of patient partner reviewers evaluated applications submitted to the workshop. Workshops were delivered over two consecutive days, one hybrid and one in-person. Each session of the workshop opened with patient partner introductions and the sharing of personal stories and experiences within a research team. This was followed by small breakout groups of 3-4 people, co-facilitated by patient partners, in which attendees were able to further discuss patient engagement. At the conclusion of the workshop, attendees and patient partners were asked to complete a survey to gather feedback on their experiences to shape future offerings of the workshop.
Results Of those who attended the workshop and completed the feedback survey (n=29), 18 (62%) attended in person; 14 (48%) self-identified as a researcher; 16 (55%) “strongly agreed” that they had “learned something new that will be useful in their future approach to patient engagement”; and 18 (62%) “strongly agreed” that “the interactive patient partner panel was helpful to their learning”. All patient partners involved in the peer review and workshop who completed the survey (n=5) indicated they were able to express their views freely, and “strongly agreed” (n=5; 100%) that the engagement initiative was a good use of their time and a collaborative experience.
Conclusion: These workshops and attendee feedback highlight that there is an appetite for learning more about the importance of patient engagement in research. For many trainees and researchers, this workshop was well received and was often their first exposure to any sort of formal education about patient engagement, often having previously thought that patient engagement and surveying patient participants were the same thing. A continued emphasis on patient engagement educational initiatives is needed to build capacity among researchers and ensure inclusion of patient partners across the research continuum.