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Cited by 286Mental Health and Patient InvolvementCommunity Health and DevelopmentHealth Policy Implementation Science

Patient stakeholder engagement in research: A narrative review to describe foundational principles and best practice activities

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Harrison, James D., Auerbach, Andrew D., Anderson, Wendy, Fagan, Maureen, Carnie, Martha, Hanson, Catherine, Banta, Jim, Symczak, Gina +4 more·2019·Health Expectations
DOI 10.1111/hex.12873PMC PMC6543160
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Abstract

Background: Health research is evolving to include patient stakeholders (patients, families and caregivers) as active members of research teams. Frameworks describing the conceptual foundations underlying this engagement and strategies detailing best practice activities to facilitate engagement have been published to guide these efforts. Objective: The aims of this narrative review are to identify, quantify and summarize (a) the conceptual foundational principles of patient stakeholder engagement in research and (b) best practice activities to support these efforts. Search Strategy, Inclusion Criteria, Data Extraction and Synthesis: We accessed a publicly available repository of systematically identified literature related to patient engagement in research. Two reviewers independently screened articles to identify relevant articles and abstracted data. Main Results: We identified 990 potentially relevant articles of which 935 (94.4%) were excluded and 55 (5.6%) relevant. The most commonly reported foundational principles were “respect” (n = 25, 45%) and “equitable power between all team members” (n = 21, 38%). Creating “trust between patient stakeholders and researchers” was described in 17 (31%) articles. Twenty‐seven (49%) articles emphasized the importance of providing training and education for both patient stakeholder and researchers. Providing financial compensation for patient stakeholders’ time and expertise was noted in 19 (35%) articles. Twenty articles (36%) emphasized regular, bidirectional dialogue between patient partners and researchers as important for successful engagement. Discussion and Conclusions: Engaging patient stakeholders in research as partners presents an opportunity to design, implement and disseminate patient‐centred research. This review creates an overarching foundational framework for authentic and sustainable partnerships between patient stakeholders and researchers.

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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 [20]

    The Discussion (page unavailable) describes Patient and Family Advisory Councils at health-care institutions as a proposed effective model for patient engagement. The Results (page unavailable) also report that some articles recommended council subcommittees focused on research activities. The paper does not establish that engagement was more successful at the project or institution level than at other levels, or specifically evaluate the councils as a community-building model. (LLM, conf=0.82)

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Authors
Harrison, J. D., Auerbach, A. D., Anderson, W., Fagan, M., Carnie, M., Hanson, C., Banta, J., Symczak, G., Robinson, E., Schnipper, J., Wong, C., & Weiss, R.
Affiliations
  • University of California, San Francisco (US)
  • University of Miami Health System (US)
  • Brigham and Women's Hospital (US)
  • Christiana Care Health System (US)
Corresponding author
Harrison, James D.
ORCID
Venue
Health Expectations
Publisher
Wiley
Published
2019-02-13
Volume
22
Issue
3
Pages
307-316
ISSN
  • 1369-6513 (ISSN-L)
  • 1369-7625
DOI
10.1111/hex.12873
PMC
PMC6543160
OpenAlex
W2912530514
Cited by
286
References
6
Citations by year
2026: 27 · 2025: 54 · 2024: 53 · 2023: 51 · 2022: 39 · 2021: 32 · 2020: 20 · 2019: 8
FWCI
4.55
Type
journal article
Language
en
Open access
Licence
Locations
  • Health Expectations (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
  • eScholarship (California Digital Library) (submittedVersion)
Funders
Patient-Centered Outcomes Research Institute (Harrison #3455)
Topics
  • Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
  • Health Sciences › Health Professions › General Health Professions › Community Health and Development
  • Health Sciences › Health Professions › General Health Professions › Health Policy Implementation Science
Keywords
patient and public involvement, patient-oriented research, research collaboration, fundamental principles, trust, education and training, financial compensation
MeSH terms
Stakeholder Participation, Cooperative Behavior, Health Services Research, Humans, Patient Participation, Research Personnel

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