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The Role of Patient Advisory Councils in Health Research: Lessons From Two Provincial Councils in Canada
Open accessAbstract
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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This appeared to be more successful at a project or institution level, where patient and family advisory groups within projects was an effective community-building model.
“This appeared to be more successful at a project or institution level, where patient and family advisory groups within projects was an effective community-building model [20, 41].”
From Supporting families and caregivers of children with disabilities through a parent peer mentor (PPM): experiences from a patient-oriented research network (2023) · cites this paper as [41]
In “Setting the Stage for Our PACs in Health Research” (page unavailable), council members say that sharing community and research-project activities helps build cohesiveness and connectedness. The paper also describes the provincial councils as examples of meaningful patient engagement. It does not say that advisory groups within projects or institutions were more successful than councils at other levels. (LLM, conf=0.82)
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References 16 · Cited by 33
Research works printed but not linked: 16
- 10.1007/s40271-018-0298-4 · DOI
- Fagan M, 2016, JCOM, 23, 219
- 10.1136/bmjqs-2015-004006 · DOI
- Wolfe J, 2017, A Report of the Beryl Institute Benchmarking Study State of Patient Experience 2015
- Garnett R, 2017, Can Fam Physician, 63, e102
- Lemire F, 2015, Can Fam Physician, 61, 384
- 10.1007/s11606-015-3450-z · DOI
- 10.1186/s12961-018-0282-4 · DOI
- 10.1186/s13023-018-0969-1 · DOI
- 10.1001/jama.2014.11100 · DOI
- 10.1093/intqhc/mzy009 · DOI
- 10.1111/hex.12090 · DOI
- 10.1111/hex.12635 · DOI
- 10.1016/j.jval.2016.10.003 · DOI
- 10.1186/s40900-016-0051-x · DOI
- 10.1186/s40900-017-0067-x · DOI
Metadata
- Authors
- Warren, M., Leamon, T., Hall, A., Twells, L., Street, C., Stordy, A., Majumdar, K., Breault, L., Fiest, K., Rasiah, J., Santana, M., & Etchegary, H.
- Affiliations
- NL Support Unit, Newfoundland and Labrador, Canada
- Memorial University of Newfoundland (CA)
- NL Support, Newfoundland and Labrador, Canada
- AbSPORU, Calgary, Alberta, Canada
- Alberta Health Services (CA)
- University of Alberta (CA)
- University of Calgary (CA)
- Corresponding author
- Etchegary, Holly
- ORCID
- Venue
- Journal of Patient Experience
- Publisher
- SAGE Publications
- Published
- 2020-03-23
- Volume
- 7
- Issue
- 6
- Pages
- 898-905
- ISSN
- 2374-3735 (ISSN-L)
- 2374-3743
- PMC
- PMC7786741
- OpenAlex
- W3013591218
- Cited by
- 33
- References
- 16
- Citations by year
- 2026: 6 · 2025: 8 · 2024: 7 · 2023: 6 · 2022: 3 · 2021: 2 · 2020: 1
- FWCI
- 3.13
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- Journal of Patient Experience (publishedVersion, cc-by-nc)
- PubMed Central (publishedVersion, cc-by-nc)
- PubMed (publishedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Topics
- Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Community Health and Development
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Keywords
- patient advisory council, patient engagement, health research, governance structures, council composition, research priorities, health policy, Newfoundland and Labrador, Alberta
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