CoChat
Sign Up
Cited by 285Mental Health and Patient InvolvementHealth Policy Implementation ScienceCommunity Health and Development

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

Open access
Boivin, Antoine, L'Espérance, Audrey, Gauvin, François‐Pierre, Dumez, Vincent, Macaulay, Ann C., Lehoux, Pascale, Abelson, Julia·2018·Health Expectations
DOI 10.1111/hex.12804PMC PMC6250878
Open this paper in CoChat — free accountOpen PDF

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.

The claims and statistics of this paper haven’t been checked yet.

Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.

A few free checks a day · papers already verified open instantly · results are public

Integrity signals

Registry

Crossref · 10.1111/hex.12804

Cites

32 of 32 references verified0 citation errors · 0 not checkable

Statistics

Claims the paper makes

The claims and statistics of this paper haven’t been checked yet.

Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.

A few free checks a day · papers already verified open instantly · results are public

Claims other papers make about this one

Each is checked against this paper’s own text: does it say what the citing paper says it does?

  • Review findings of empirical studies in PPI show that short-term, individual-level outcomes were more represented in the literature.

    “This is consistent with review findings of empirical studies in PPI whereby short‐term, individual‐level outcomes were more represented in the literature. 43 , 91 , 92”

    From A systematic review of theories, models and frameworks used for youth engagement in health research (2024) · cites this paper as [92]

    The Results (Assessment of the tools; page unavailable) say that tools evaluating PPI outcomes most commonly focused on perceived, self-reported impacts, which supports a related emphasis. But this is a review of evaluation tools, not a finding about outcomes represented in empirical studies, and the passage does not establish that short-term, individual-level outcomes predominated. (LLM, conf=0.78)

    Experimental — accuracy not yet measured

Self-check

Percentages, sums and reported differences re-computed from the paper’s own numbers.

The self-check needs the paper’s full text.

Cites

Flagged first, then by citations

2 of the 34 references couldn’t be matched to a known paper.

Research works printed but not linked: 3

  1. [5]Coulter A. Engaging Patients in Healthcare. Berkshire, UK: McGraw‐Hill Education; 2011.
  2. [6]Abelson J, Montesanti S, Li K, Gauvin FP, Martin EL. Effective Strategies for Interactive Public Engagement in the Development of Healthcare Policies and Programs. Ottawa, ON: Canadian Health Services Research Foundation; 2010: 1‐ 52.
  3. [25]Trochim WM. The research methods knowledge base. 2006 [cited (version current as of October 20, 2006); 2nd Edition. https://socialresearchmethods.net/index.htm. Accessed March 15, 2017.

Cited by

Sorted by citations

Related

Authors
Boivin, A., L'Espérance, A., Gauvin, F., Dumez, V., Macaulay, A. C., Lehoux, P., & Abelson, J.
Affiliations
  • Centre d’excellence sur le partenariat avec les patients et le public (CA)
  • Center of Excellence on Partnership with Patients and the Public (CEPPP) Montreal QC Canada
  • McGill University (CA)
  • Université de Montréal (CA)
  • McMaster University (CA)
Corresponding author
Boivin, Antoine
ORCID
Venue
Health Expectations
Publisher
Wiley
Published
2018-07-30
Volume
21
Issue
6
Pages
1075-1084
ISSN
  • 1369-6513 (ISSN-L)
  • 1369-7625
DOI
10.1111/hex.12804
PMC
PMC6250878
OpenAlex
W2887442678
Cited by
285
References
34
Citations by year
2026: 23 · 2025: 28 · 2024: 63 · 2023: 51 · 2022: 39 · 2021: 37 · 2020: 24 · 2019: 16 · 2018: 4
FWCI
3.66
Type
journal article
Language
en
Open access
Licence
Locations
  • Health Expectations (publishedVersion, cc-by)
  • Europe PMC (PubMed Central) (publishedVersion, other-oa)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
Funders
Canada Research Chairs
Topics
  • Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
  • Health Sciences › Health Professions › General Health Professions › Health Policy Implementation Science
  • Health Sciences › Health Professions › General Health Professions › Community Health and Development
Keywords
patient and public engagement, assessment instruments, research engagement, health system decision-making, patient involvement, citizen participation, scientific rigor, tool development, usability
MeSH terms
Decision Making, Delivery of Health Care, Health Priorities, Health Services Research, Humans, Patient Participation, Surveys and Questionnaires, Program Evaluation, Quality Improvement

About these checks

Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.

Statistics and arithmetic are recomputed, not judged.

Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.

What counts as a claim ›How we measure confidence ›How we check this ›

Are you an author, or do you see a problem with this page? Request a review