Diverse Communities Facing Multiple Barriers to Engagement in Patient-Oriented Research

plain language summary

Health care services and organizations are working to better meet the needs of patients and communities. One way to achieve this goal is to involve patients in the research studies that help health care professionals make good decisions. This has become widely known as patient-oriented research (POR). As this kind of research evolves, it is important that we gain more understanding of the best ways to involve patients who face multiple barriers to being part of research teams and projects, such as those with complex medical conditions or people who experience housing or food insecurity.

This project aims to study patients and researchers who have participated in some form of POR to determine helpful and meaningful ways of engaging these patients/communities in research in British Columbia. We will do this in three major steps. The first involves reviewing the literature to understand what knowledge exists about POR for patients/communities facing difficulties in participating. The second step involves interviewing 30-40 research and patient/community participants who live in different places in BC, come from different backgrounds and communities, and who have different kinds of experiences being part of research teams. The third step involves bringing this information together in order to develop some tools that might help other researchers to partner with patients facing multiple barriers work together. Our POR study team will include patient/community partners and we will use their guidance to fully consider these complex issues and to help us undertake this research study.   

 Knowledge Translation Outputs

Publications in Progress

“My Opinion Matters Too! What Makes Patient Partners Feel Valued in Patient-Oriented Research?” Authors: Kiranpreet Ghag, Daisy Au, Nancy Clark, Barbara Croome, Maryam Dehnadi, Shayna Dolan, Jessica Froese, Joyce Griffith, Russ Maynard, Sue Mills, Davina Banner

this project is funded through