PCR022: Demonstrating the complexity of patient-partnered research in primary care: a snapshot of Patient-Partners

Gillian Bartlett-Esquilant, PhD; Jamie DeMore, MA; Roger Stoddard; Brenda Andreas; Ghislaine Rouly; Annick Beaudry; Alanna Baldwin, PhD; Mpho Begin, MSc, P.Eng; Karina Prévost; Lynne Mansell; Joan Cranston, BSc.P.T.

Abstract

Background: In Canada, we are still struggling to achieve the critical goal of enabling performant health care systems that moves research results to real-world impact particularly for primary care. To address this, we have created a primary care research network where patient partners are involved in all levels of decision making for governance, research, and innovation. For many researchers, however, it is unclear what primary care patient-partners 'brings to the table.' As the Pan-Canadian Patient Council of the Primary and Integrated Health Care Innovations Network, we wanted to provide insight into the richness of expertise and experience patient partners contribute.

Objectives: To provide an example of the characteristics, history and lived experience that patient-partners in a primary care research network represent and demonstrate the resource this presents.

Methods: As current council members, representing 10 provinces, we developed a survey of our demographics, personal history and experience in patient-oriented research using iterative, collaborative meetings. The answers to the questions provided “snapshots” for each of us. As a group, we worked with researchers to descriptively and thematically analyze the responses to provide insight and a description of primary care research patient partners.

Results: With 2 men and 8 women, we represented an average of 42.5 years of experience with health conditions (range 10-84 years) including cancer, genetic conditions, and multiple chronic diseases. On average, we worked with 4.7 different organizations each (range 2-9) on research topics covering the spectrum of primary care. Many of us acted as mentors for researchers and trainees. All of us were innovators and influencers with demonstrated leadership skills. A need for more diversity in terms of age and underrepresented minorities was noted.

Conclusion: Diversity of life experience, extensive exposure to the health care system and strong engagement with multiple organizations for primary care research characterized us as patient-partners. This lived expertise represents a significant asset for researchers. This work should encourage researchers to starting thinking about how to include primary care patient-partners as a crucial resource in health research.
Leave a Comment
Jack Westfall
jwestfall@aafp.org 11/19/2021

awesome work. so great to see more folks engaging patients and community members. very nice. thanks.

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

Congratulations to all! Thanks for sharing the Podcast clips which are awe inspiring. Are you writing a manuscript to go with this so that the story can be read around the world?

Jackie Bartlett
11/21/2021

Excellent poster on patient partners and what they can bring to the table. 

Gillian Bartlett
gillian.bartlett@health.missouri.edu 11/21/2021

I am extremely proud of our patient-partners that developed this...a manuscript...hmmm... what do you think Brenda et al ?

Gayle Halas
Gayle.Halas@umanitoba.ca 11/21/2021

Great poster - and so happy you've done this work! We (all of us in the 'research community') are still learning how to work together and work together well. I, personally, have felt much more fulfilled working with patient/public partners.

Emily Godfrey
11/22/2021

Thanks for bringing to light the value of having primary care patient partners in your work. Excellent poster!

Ann Macaulay
ann.macaulay@mcgill.ca 11/22/2021

Excellent - so important to have patient engagement. Great podcast clips. Agree with comment below - it would make a powerful article

Christina Holt, MD
holtc@mmc.org 11/23/2021

this is great - consider submitting to the Journal of Participatory Medicine https://jopm.jmir.org/about-journal/focus-and-scope

Andy Pasternak
avpiv711@sbcglobal.net 11/26/2021

Good work highlighting this

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