My Opinion Matters Too! What Makes Patient Partners Feel Valued in Patient-Oriented Research? Learning From Patient Partners who Experience Barriers to Engagement in Healthcare and Research
Kiranpreet Ghag, Davina Banner, Barbara Croome, Daisy Au, Nancy Clark, Maryam Dehnadi, Shayna Dolan, Ursula Ellis, Jessica Froese, Joyce Griffith, Russell Maynard, Shannon Freeman, Susan MillsBackground
In recent years, there has been an increasing shift toward more collaborative approaches to research, with greater inclusion of diverse patients and community members in the research process. However, further exploration is needed to understand the factors that contribute to research partners feeling valued within teams. Gaining this insight could help foster supportive environments that empower these individuals to meaningfully contribute their expertise.
Purpose
Our research aims to understand what makes patients and community partners, specifically those who experience barriers to engagement in research, feel valued in the patient-oriented research (POR) process.
Methods
We conducted semi-structured interviews with 37 participants located in communities across British Columbia, Canada. Participants were identified as patients, community members, knowledge users, and researchers engaged in POR. Here, we draw specifically on the insights of 14 participants who identified as patient or community partners. Data were analyzed thematically, and an intersectionality lens was adopted to sensitize the research to the complexities and interactions of diverse and overlapping social locations in research.
Results
Five themes emerged from our data analysis that focused on factors that make patient partners feel valued. These include: (1) building trusting relationships and communicating effectively, (2) respecting the patient partner’s expertise and recognition for their contributions, (3) working across diverse social spaces, (4) compensating and recognizing, and (5) taking a trauma-informed and culturally sensitive approach.
Conclusions
Optimal patient engagement is vital for knowledge generation, with the potential to enrich research projects and their related impacts. Our research highlights factors that should be considered for a productive knowledge exchange in the context of patient-oriented research with patients from diverse communities.