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

Abstract

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.
Leave a Comment
Viv Ramsden
viv.ramsden@usask.ca 11/21/2021

Maggie et al, looks great and has a wonderful story to tell.

Maggie MacNeil
macnem18@mcmaster.ca 11/23/2021

Thanks Viv!

Jack Westfall
jwestfall@aafp.org 11/21/2021

Terrific project. Great poster and abstract. Thanks for sharing at NAPCRG

Diane Harper
harperdi@med.umich.edu 11/22/2021

Present your results in Phoenix next year! Thank you for sharing your work with NAPCRG!

maret felzien
maret.felzien@outlook.com 11/23/2021

I love the group name - "PERC" and clear involvement of patient expertise and collaboration.  True co-learning happening here.  Hopefully this relationship continues and grows. 

William R. Phillips
wphllps@uw.edu 11/23/2021

Elegant and effective poster on a great research topic. All very close to the heart of NAPCRG. The relatively small number of survey respondents suggests that valuable lessons might be learned by expanding the same study across different research programs in different communities. Also, I always wonder if the patients representatives we partner with are reflective of the non-volunteer members in the community. It would be intriguing to assess differences between community members, volunteer research partners, and the professional community representative. Excellent work. Hope you continue on this important line of inquiry. Thanks for sharing your work here at NAPCRG. - Bill Phillips

Arturo Martinez
arturo.martinez.guijosa@gmail.com 11/23/2021

Very clear and easy to follow posters. Evidence of long term relationship being build and patient partners. Excited to see the continued development and impact down the road.

Andy Pasternak
avpiv711@sbcglobal.net 11/28/2021

Great poster design- I'll be interested to see your results in PHX

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