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

Overview
Journal J Patient Exp
Specialty Health Services
Date 2021 Jan 18
PMID 33457517
Citations 8
Authors
Affiliations
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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.

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References
1.
Domecq J, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N . Patient engagement in research: a systematic review. BMC Health Serv Res. 2014; 14:89. PMC: 3938901. DOI: 10.1186/1472-6963-14-89. View

2.
Young K, Kaminstein D, Olivos A, Burroughs C, Castillo-Lee C, Kullman J . Patient involvement in medical research: what patients and physicians learn from each other. Orphanet J Rare Dis. 2019; 14(1):21. PMC: 6346573. DOI: 10.1186/s13023-018-0969-1. View

3.
Ramaswamy R, Reed J, Livesley N, Boguslavsky V, Garcia-Elorrio E, Sax S . Unpacking the black box of improvement. Int J Qual Health Care. 2018; 30(suppl_1):15-19. PMC: 5909642. DOI: 10.1093/intqhc/mzy009. View

4.
Lemire F . Patient and public engagement. Can Fam Physician. 2015; 61(4):384, 383. PMC: 4396770. View

5.
Kirwan J, de Wit M, Frank L, Haywood K, Salek S, Brace-McDonnell S . Emerging Guidelines for Patient Engagement in Research. Value Health. 2017; 20(3):481-486. DOI: 10.1016/j.jval.2016.10.003. View