ReviewHealth expectations : an international journal of public participation in health care and health policy2019
Patient stakeholder engagement in research: A narrative review to describe foundational principles and best practice activities.
Review in Health expectations : an international journal of public participation in health care and health policy, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 174 papers, 3 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
174 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- What makes patients engaged: a meta narrative review and multilevel perspective on patient engagement.BMC psychology · 2026Pooled it
- Patient and Public Involvement in Pharmacoepidemiological Research: An Environmental Scan of an Emerging Area.Pharmacoepidemiology and drug safety · 2025Pooled it
- The benefits, challenges, and best practice for patient and public involvement in evidence synthesis: A systematic review and thematic synthesis.Health expectations : an international journal of public participation in health care and health policy · 2023Pooled it
- Patient Engagement in the Design and Conduct of the HOPE Trial: Addressing Chronic Pain in Hemodialysis Patients.Clinical journal of the American Society of Nephrology : CJASN · 2025Trial
- Lessons Learned From Beta-Testing a Facebook Group Prototype to Promote Treatment Use in the "Connecting Alaska Native People to Quit Smoking" (CAN Quit) Study.Journal of medical Internet research · 2022Trial
- Trial
- 'It reshaped how I will do research': A qualitative exploration of team members' experiences with youth and family engagement in a randomized controlled trial.Health expectations : an international journal of public participation in health care and health policy · 2021Trial
- Perioperative education for patients undergoing colorectal stoma surgery: A scoping review.International journal of nursing studies advances · 2026Review
- Valuing student voices: a qualitative study on fair recognition and compensation practices for student partners in mental health research.Research involvement and engagement · 2026Article
- Developing best practices for engaging and involving palliative care patients in research in sub-Saharan Africa.Research involvement and engagement · 2026Article
- 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
- From carbon reduction to care quality: a stakeholder-informed agenda for decarbonizing care homes.The Gerontologist · 2026Article
- Sisters impacting the SISTER diabetes study: partnering with a Patient Advisory Group across the research continuum.Research involvement and engagement · 2026Article
- Multinational stakeholder engagement to inform future development and refinement of the EuroQol toddler and infant populations (EQ-TIPS).The European journal of health economics : HEPAC : health economics in prevention and care · 2026Article
- Evolving Roles for Patients as Partners in a National Kidney Health Research Network: A Qualitative Study.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- What Matters Most: The Top 10 Child and Adolescent Cancer Research Priorities in Australia.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- The next phase in Long COVID research: addressing the ethical challenges in trials of disease-modifying treatments.EClinicalMedicine · 2026Review
- A practical step-by-step approach for patient and public involvement in eHealth intervention research: Lessons learned from three case projects.Internet interventions · 2026Article
- Putting FUN into involvement: feedback user needs in the design of a mobile phone app for people with long-term conditions.Research involvement and engagement · 2026Article
- Strategies for engaging individuals with traumatic brain injury and cognitive impairment in virtual research settings.Research involvement and engagement · 2026Article
114 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
12 authors.
Funding
Abstract
backgroundHealth 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.
objectiveThe 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
resultsWe 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
conclusionsEngaging 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.
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.