ReviewHealth expectations : an international journal of public participation in health care and health policy2020
Evaluating the "return on patient engagement initiatives" in medicines research and development: A literature review.
Review in Health expectations : an international journal of public participation in health care and health policy, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 94 papers, 7 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
94 citing papers in PubMed, 7 syntheses or guidelines pooled it.
- Identifying Common Patient-Oriented Priorities for Child and Adolescent Health Research and Care: A Systematic Review of Priority Setting Partnerships.Health expectations : an international journal of public participation in health care and health policy · 2025Pooled it
- Evaluation of research co-design in health: a systematic overview of reviews and development of a framework.Implementation science : IS · 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
- Patient and Patient Group Engagement in Cancer Clinical Trials: A Stakeholder Charter.Current oncology (Toronto, Ont.) · 2021Guideline
- Promising Patient-Engagement Practices Used by National Research Networks at the US Veterans Health Administration: Perspectives of Veterans, Staff, and Research Leaders.Learning health systems · 2026Article
- Patient Engagement Activities and Infrastructure Among US Veterans Affairs National Research Networks.Journal of general internal medicine · 2026Article
- Using Partner-Driven Maximum Variance Sampling to Form a Lived Experience Panel: Step-by-Step Tutorial.Journal of participatory medicine · 2026Article
- What are the characteristics and impacts of a patient-led conference? A qualitative study.BMJ open · 2026Article
- "Truly having a conversation with each member about their needs": accessibility considerations for the engagement of people with lived and living experience and caregivers in mental health and substance use health research.Research involvement and engagement · 2026Article
- Patient partnership in primary health care systems of the future: a structured priority setting exercise.Research involvement and engagement · 2026Article
- Making room for patients in economic evaluation: a commentary on current capacity and future directions.Research involvement and engagement · 2026Article
- Development of a Patient and Carer Advisory Board to Co-Design Health Services Research for the Quality of Care of People With Dementia.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Barriers and solutions for healthcare professionals to involve patients as partners in oncology research: Project RISE.Future oncology (London, England) · 2026Article
- Methods of Engaging Interest-Holders in Healthcare Evidence Syntheses: A Scoping Review.Cochrane evidence synthesis and methods · 2026Review
- Prioritizing patient-centered research in adult congenital heart disease and pregnancy: Findings from Phase 3 of a multiphase national initiative.Pregnancy (Hoboken, N.J.) · 2026Article
- Authentic content as an effective mechanism for embedding patient voices in health innovation: a hypothesis and conceptual framework.Frontiers in health services · 2026Article
- Navigating uncertainty together: a participatory mixed-method study of counseling services for couples living with multiple sclerosis.Frontiers in public health · 2026Observational
34 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
14 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundShowing how engagement adds value for all stakeholders can be an effective motivator for broader implementation of patient engagement. However, it is unclear what methods can best be used to evaluate patient engagement. This paper is focused on ways to evaluate patient engagement at three decision-making points in the medicines research and development process: research priority setting, clinical trial design and early dialogues with regulators and health technology assessment bodies.
objectiveOur aim was to review the literature on monitoring and evaluation of patient engagement, with a focus on indicators and methods. SEARCH STRATEGY AND INCLUSION CRITERIA: We undertook a scoping literature review using a systematic search, including academic and grey literature with a focus on evaluation approaches or outcomes associated with patient engagement. No date limits were applied other than a cut-off of publications after July 2018. DATA EXTRACTION AND SYNTHESIS: Data were extracted from 91 publications, coded and thematically analysed. MAIN
resultsA total of 18 benefits and 5 costs of patient engagement were identified, mapped with 28 possible indicators for their evaluation. Several quantitative and qualitative methods were found for the evaluation of benefits and costs of patient engagement. DISCUSSION AND
conclusionsCurrently available indicators and methods are of some use in measuring impact but are not sufficient to understand the pathway to impact, nor whether interaction between researchers and patients leads to change. We suggest that the impacts of patient engagement can best be determined not by applying single indicators, but a coherent set of measures.
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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.