SynthesisHealth expectations : an international journal of public participation in health care and health policy2018
Patient and public engagement in research and health system decision making: A systematic review of evaluation tools.
Synthesis in Health expectations : an international journal of public participation in health care and health policy, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 160 papers, 10 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
160 citing papers in PubMed, 10 syntheses or guidelines pooled it.
- Evaluation of research co-design in health: a systematic overview of reviews and development of a framework.Implementation science : IS · 2024Pooled it
- Public participation in decisions about measures to manage the COVID-19 pandemic: a systematic review.BMJ global health · 2024Pooled it
- A systematic review of theories, models and frameworks used for youth engagement in health research.Health expectations : an international journal of public participation in health care and health policy · 2024Pooled it
- Towards conceptualizing patients as partners in health systems: a systematic review and descriptive synthesis.Health research policy and systems · 2023Pooled it
- Tools for assessing health research partnership outcomes and impacts: a systematic review.Health research policy and systems · 2023Pooled it
- How are health research partnerships assessed? A systematic review of outcomes, impacts, terminology and the use of theories, models and frameworks.Health research policy and systems · 2022Pooled it
- Evaluating health service outcomes of public involvement in health service design in high-income countries: a systematic review.BMC health services research · 2021Pooled it
- Identifying evidence of effectiveness in the co-creation of research: a systematic review and meta-analysis of the international healthcare literature.Journal of public health (Oxford, England) · 2021Pooled it
- Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot.Health expectations : an international journal of public participation in health care and health policy · 2019Pooled it
- Patient and public engagement in research and health system decision making: A systematic review of evaluation tools.Health expectations : an international journal of public participation in health care and health policy · 2018Pooled it
- Patient involvement in developing a patient-targeted feedback intervention after depression screening in primary care within the randomized controlled trial GET.FEEDBACK.GP.Health expectations : an international journal of public participation in health care and health policy · 2021Trial
- The Challenge of Public Participation in European Hospitals: A Portuguese Case Study.Portuguese journal of public health · 2026Article
- Codesigning a pharmacist-led transition of care program in the emergency department: a qualitative participatory study.International journal of clinical pharmacy · 2026Article
- Evaluation of the Implementation and Contribution of Patient Partners on a Steering Committee at a University Hospital in the Province of Québec, Canada.Healthcare (Basel, Switzerland) · 2026Article
- A qualitative descriptive study to explore evaluation and effects of partnered rehabilitation research in Canada.Health research policy and systems · 2026Article
- Reducing tokenism in patient and public involvement by integrating the Gothenburg person-centred care framework, relational bridges and impact log - a co-produced position paper.Research involvement and engagement · 2026Article
- Frameworks to Evaluate the Quality of Public Involvement in Health and Social Care Research: A Scoping Review.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Theorizing How Context Influences School-Based Interventions That Support Children's Weight Management: Co-Producing a Refined Logic Model.Journal of participatory medicine · 2026Article
- Co-creating discovery in basic science: Challenges and opportunities in patient-partnered research for rare liver disease.Canadian liver journal · 2026Article
- Deliberations on Government Spending Priorities: Listen to the People.Journal of general internal medicine · 2026Article
100 more citing papers are in PubMed but not listed here.
Corrections and comments
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Authors and funding
7 authors.
Funding
Abstract
backgroundPatient 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.
objectiveSystematically review and appraise evaluation tools for patient and public engagement in research and health system decision making.
methodsWe 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.
resultsIn 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.
conclusionA 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.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.