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

Watch a video summarizing this project, featuring project co-leads Barbara and Davina.

This video was created early in the research process.

Runtime: 3:00

Project Summary

As patient-oriented research evolves, it is important that we gain more understanding of the best ways to involve a diverse range of patients and community members, particularly those who may face multiple barriers to being part of research teams and projects, such as people living with complex medical conditions or who experience housing or food insecurity.

Our project has explored factors that support engagement and partnership in patient-oriented research. We have learned about the importance of building relationships and trust, and how different approaches may benefit or potential harm those involved.

Our team was co-led with patient and community partners, which we believe was critical to the success of this project.

Project Findings

We are working through four main objectives:

 

Reviewing the literature to understand what knowledge exists about patient-oriented research for patients and communities facing difficulties in participating.

With assistance from a UBC librarian, after screening, we have identified a sample of 180 documents. We are in the process of finalizing the key themes of best practices.

Interviewing researchers and patient or 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.

We have conducted 35 interviews. Analysis is almost complete and we will be working with our patient and community partners in January 2022 to interpret findings.

Synthesizing this knowledge (bringing this information together) to determine effective methods.

To be developed in collaboration with patient and community partners.

Developing tools that can support researchers and diverse communities in patient-oriented research and patient engagement activities.

To be developed in collaboration with patient and community partners.

This project is part of the Patient Engagement Methods Cluster.

Project Leads

Dr. Davina Banner, Co-lead
Barbara Croome, Co-lead
Dr. Sue Mills, Co-lead
Dr. Nancy Clark
Daisy Au
Russ Maynard
Ursula Ellis
Shayna Dolan
Maryam Dehnadi
Daman Kandola
Kiran Ghag
Joyce Griffith
Andreea Brabete
Dr. Harneet Gill
Jennifer Brown