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
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.
Jack Westfall
jwestfall@aafp.org 11/19/2021awesome work. so great to see more folks engaging patients and community members. very nice. thanks.