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

• Published in: Journal of Patient Experience
• Main Authors: Mike Warren BSc (Hons), Toni Leamon, Amanda Hall PhD, MPE, Laurie Twells BA, MSc, Phd, Catherine Street B.Pharm.Hons, Allan Stordy, Kakali Majumdar MSc, MSc Botany, Lorraine Breault PhD, R.Psych, Kirsten Fiest PhD, Jananee Rasiah PhD Candidate, MN, RN, Maria Santana PhD, Holly Etchegary BA, MASP, PhD
• Format: Article in Journal/Newspaper
• Language: English
• Published: SAGE Publishing 2020
• Subjects: Medicine (General); R5-920; Newfoundland; Canada
• Online Access: https://doi.org/10.1177/2374373520909598; https://doaj.org/article/653579b586b14a4d9e404d6624f15a35

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.