SRFP075: Patient Expertise in Research Collaboration (PERC) - Advancing patient engagement in primary health care research
Maggie MacNeil, PhD; Rebecca Ganann, PhD; Vivian Ramsden, PhD, BSN, MS, RN, MCFP (Hon.); Ron Beleno, BSc; Claire Ludwig, MA, RN; Joan Barker
Context: Patient-oriented approaches to research are prioritized in Canada and internationally, but fewer studies exist examining patient-oriented research in primary health care (PHC). A primary health care system better-informed by patient-oriented research is more responsive to the needs of Canadians receiving primary care every day. In 2016, Ontario’s Patient Engagement Resource Centre (PERC) - PHC was established. With a shift leadership in 2020, PERC engaged in a collaborative exercise to strategize how to best achieve PERC’s aim to strengthen capacity in patient-engaged research in primary health care in Ontario and beyond. Objective: This project describes the collective process of working with an eight-person Advisory Board of people with lived and research expertise (who have experience and/or cared for someone with a life-limiting or chronic condition managed in primary health care) to re-imagine PERC’s mission and vision. Study Design: Participatory approach to strategic planning for engagement in PHC research. Setting: Virtual engagement of community-based Advisory Board members. Population studied: Ontario-based adults who have experience and/or cared for someone with a life-limiting or chronic condition managed in primary health care. Outcome measure: The Patient Partner Engagement Evaluation Tool was supplemented by qualitative analysis of quarterly meeting minutes to determine perceptions of Advisory Board members on engagement which will guide the mission, vision and activities of PERC. Results: Eight Advisory Board members participated in six meetings over the course of a year to guide the strategic direction of the PERC group. All meetings were attended by the majority of the Advisory Board. Meeting notes and survey results indicated a strong desire to acknowledge the expertise of the group and led to the re-naming of the group. Subsequent discussion was undertaken to consider a new logo, and branding of the website and social media of the group. The group also prioritized closer integration with the INSPIRE-PHC (Innovations Strengthening Primary Health Care Through Research) Network, recognizing the value of patient engagement in primary health care. Conclusions: Every group of patient partners have different aims, aspirations for impact and expertise to bring to research. Researchers can explore these differences at the outset of research projects to foster an environment that is conducive to authentic engagement.
Viv Ramsden
viv.ramsden@usask.ca 11/21/2021Maggie et al, looks great and has a wonderful story to tell.