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

Author:

Warren Mike1,Leamon Toni1,Hall Amanda2,Twells Laurie3,Street Catherine4,Stordy Allan5,Majumdar Kakali5,Breault Lorraine6,Fiest Kirsten6,Rasiah Jananee7,Santana Maria8,Etchegary Holly9ORCID

Affiliation:

1. NL Support Unit, Newfoundland and Labrador, Canada

2. NL Support Unit and Primary Healthcare Research Unit, Memorial University, St. John’s, Newfoundland and Labrador, Canada

3. NL Support Unit, and School of Pharmacy and Clinical Epidemiology, Memorial University, St. John’s NL, Newfoundland and Labrador, Canada

4. NL Support, Newfoundland and Labrador, Canada

5. AbSPORU, Calgary, Alberta, Canada

6. AbSPORU and Department of Critical Care Medicine, University of Calgary and Alberta Health Services, Calgary, Alberta, Canada

7. AbSPORU Platform and Faculty of Health Disciplines, Athabasca University, Faculty of Nursing, University of Alberta, AbSPORU Platform and Departments of Pediatrics and Community Health Sciences, University of Calgary, Calgary, Alberta, Canada

8. Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada

9. Clinical Epidemiology, Faculty of Medicine, Memorial University, St. John’s, NL and NL Support, Newfoundland and Labrador, Canada

Abstract

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.

Publisher

SAGE Publications

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