Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2018 Dec;21(6):1075-1084.
doi: 10.1111/hex.12804. Epub 2018 Jul 30.

Patient and public engagement in research and health system decision making: A systematic review of evaluation tools

Antoine Boivin  1   2   3   4 , Audrey L'Espérance  3 , François-Pierre Gauvin  3   5 , Vincent Dumez  3   6 , Ann C Macaulay  7 , Pascale Lehoux  4 , Julia Abelson  8
Affiliations

Patient and public engagement in research and health system decision making: A systematic review of evaluation tools

Antoine Boivin et al. Health Expect. 2018 Dec.

Abstract

Background: Patient and public engagement is growing, but evaluative efforts remain limited. Reviews looking at evaluation tools for patient engagement in individual decision making do exist, but no similar articles in research and health systems have been published.

Objective: Systematically review and appraise evaluation tools for patient and public engagement in research and health system decision making.

Methods: We searched literature published between January 1980 and February 2016. Electronic databases (Ovid MEDLINE, Embase, Cochrane Database of Systematic Reviews, CINAHL and PsycINFO) were consulted, as well as grey literature obtained through Google, subject-matter experts, social media and engagement organization websites. Two independent reviewers appraised the evaluation tools based on 4 assessment criteria: scientific rigour, patient and public perspective, comprehensiveness and usability.

Results: In total, 10 663 unique references were identified, 27 were included. Most of these tools were developed in the last decade and were designed to support improvement of engagement activities. Only 11% of tools were explicitly based on a literature review, and just 7% were tested for reliability. Patients and members of the public were involved in designing 56% of the tools, mainly in the piloting stage, and 18.5% of tools were designed to report evaluation results to patients and the public.

Conclusion: A growing number of evaluation tools are available to support patient and public engagement in research and health system decision making. However, the scientific rigour with which such evaluation tools are developed could be improved, as well as the level of patient and public engagement in their design and reporting.

Keywords: evaluation instruments; patient and public engagement; quality improvement; research; systematic review.

PubMed Disclaimer

Figures

Figure 1
Figure 1
Number of references identified through the stages of the systematic review
See this image and copyright information in PMC

Comment in

  • Unpacking the potential of developmental evaluation in codesign work.
    Buettgen A, Micsinszki SK, Phoenix M, Mulvale G, Wyndham-West M, Park S, Bruce E, Fleisig R, Rogerson K, Murray-Leung L, Moll S. Buettgen A, et al. Health Expect. 2022 Aug;25(4):1186-1189. doi: 10.1111/hex.13456. Health Expect. 2022. PMID: 35894808 Free PMC article. No abstract available.

References

    1. Boote J, Wong R, Booth A. ‘Talking the talk or walking the walk?’ A bibliometric review of the literature on public involvement in health research published between 1995 and 2009. Health Expect. 2015;18:44‐57. - PMC - PubMed
    1. Richards T, Montori VM, Godlee F, Lapsley P, Paul D. Let the patient revolution begin. BMJ. 2013;346:f2614. - PubMed
    1. Barello S, Graffigna G, Vegni E. Patient engagement as an emerging challenge for healthcare services: mapping the literature. Nurs Res Pract. 2012;2012:905934. - PMC - PubMed
    1. Esmail L, Moore E, Rein A. Evaluating patient and stakeholder engagement in research: moving from theory to practice. J Comp Eff Res. 2015;4:133‐145. - PubMed
    1. Coulter A. Engaging Patients in Healthcare. Berkshire, UK: McGraw‐Hill Education; 2011.

Publication types

Grants and funding

LinkOut - more resources