The Role of Patient Advisory Councils in Health Research: Lessons From Two Provincial Councils in Canada

• Published in: Journal of Patient Experience
• Main Authors: Warren, Mike, Leamon, Toni, Hall, Amanda, Twells, Laurie, Street, Catherine, Stordy, Allan, Majumdar, Kakali, Breault, Lorraine, Fiest, Kirsten, Rasiah, Jananee, Santana, Maria, Etchegary, Holly
• Format: Text
• Language: English
• Published: SAGE Publications 2020
• Subjects: Feature; Canada; Newfoundland
• Online Access: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7786741/; https://doi.org/10.1177/2374373520909598

This article describes two patient advisory councils (PACs) in Canada in order to contribute to the limited evidence base on how they might facilitate patient engagement in health research. Specifically, members of PACs from Newfoundland and Labrador and Alberta describe their councils’ governance structure, primary functions, creation and composition, and recount specific research-related activities with which they have been involved. Key challenges of these councils and facilitators of their use are also presented. Finally, members from both councils recount lessons learned and offer suggestions for others interested in advisory councils as a mechanism for patient engagement in any health research project. Members believe patient engagement can result in better quality research and encourage decision makers and researchers to utilize patients’ valuable input to inform health system changes and drive priorities at a policy level.