SynthesisBMC health services research2014
Patient engagement in research: a systematic review.
Synthesis in BMC health services research, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to 2 registered trials, which are not on this map. Cited by 980 papers, 6 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.
A Patient-centered Approach to Urinary Incontinence and Quality of Life in Children and Adolescents With Spina Bifida
Community Members as Reviewers of Medical Journal Manuscripts
Who cites it
980 citing papers in PubMed, 6 syntheses or guidelines pooled it.
- What makes patients engaged: a meta narrative review and multilevel perspective on patient engagement.BMC psychology · 2026Pooled it
- Beyond the hospital gown: a systematic review of the common characteristics and design challenges of patient clothing across healthcare departments.Frontiers in health services · 2026Pooled it
- Patient and public involvement and engagement (PPIE) in Otolaryngology research: a systematic review of randomised controlled trials.European archives of oto-rhino-laryngology : official journal of the European Federation of Oto-Rhino-Laryngological Societies (EUFOS) : affiliated with the German Society for Oto-Rhino-Laryngology - Head and Neck Surgery · 2025Pooled 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
- Patient and Public Involvement in Pharmacoepidemiological Research: An Environmental Scan of an Emerging Area.Pharmacoepidemiology and drug safety · 2025Pooled it
- Pooled it
- Can a Public and Patient Involvement (PPI) Informed Participant Information Leaflet (PIL) Improve Trial Recruitment, Retention, and Quality of Decision Making? Results of a Randomised Controlled Double-Blind Study Within a Trial (SWAT).Health expectations : an international journal of public participation in health care and health policy · 2025Trial
- The impact of a patient advisory board on a clinical comparative effectiveness trial: a comparison of patient and researcher perspectives.Journal of comparative effectiveness research · 2025Trial
- Enhancing translation capacities of COVID-19 researchers through interdisciplinary collaboration: empathy, awareness, and action.International journal of qualitative studies on health and well-being · 2026Article
- Article
- Valuing student voices: a qualitative study on fair recognition and compensation practices for student partners in mental health research.Research involvement and engagement · 2026Article
- Patient engagement in protocol development for rare disease clinical trials: a framework.Research involvement and engagement · 2026Article
- Embedding Consumer-Led Research in a Comprehensive Cancer Centre Alliance: A Mixed-Methods Evaluation.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Development of a Women's Empowerment Nurse-Led Group Intervention for Benzodiazepine and Z-Hypnotic Deprescription in Primary Healthcare: Results of a Co-Creation Process.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Engaging Parents in Healthcare Interventions to Improve Paediatric Patient Safety: A Scoping Review.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Patient Engagement Activities and Infrastructure Among US Veterans Affairs National Research Networks.Journal of general internal medicine · 2026Article
- Bridging Lived and Expert Experience: A Qualitative Study Exploring Lived-Experience Experts' and Researchers' Experiences of Public Engagement in Cancer Research.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Cocreation of a Digital Psychological Intervention to Improve Mental Health Among Survivors of Breast Cancer (SerenApp): Protocol for a Usability and Pilot Randomized Controlled Trial.JMIR research protocols · 2026Article
- Using Pre-Study Patient Interviews to Refine Electronic Patient-Reported Outcomes in Clinical Research of Ustekinumab Induction for Ulcerative Colitis (SIRIUS Study).Advances in therapy · 2026Article
- Questions for more insightful and useful analyses of barriers and facilitators to public involvement and engagement in health research: a critical narrative review.Research involvement and engagement · 2026Review
920 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
17 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundA compelling ethical rationale supports patient engagement in healthcare research. It is also assumed that patient engagement will lead to research findings that are more pertinent to patients' concerns and dilemmas. However; it is unclear how to best conduct this process. In this systematic review we aimed to answer 4 key questions: what are the best ways to identify patient representatives? How to engage them in designing and conducting research? What are the observed benefits of patient engagement? What are the harms and barriers of patient engagement?
methodsWe searched MEDLINE, EMBASE, PsycInfo, Cochrane, EBSCO, CINAHL, SCOPUS, Web of Science, Business Search Premier, Academic Search Premier and Google Scholar. Included studies were published in English, of any size or design that described engaging patients or their surrogates in research design. We conducted an environmental scan of the grey literature and consulted with experts and patients. Data were analyzed using a non-quantitative, meta-narrative approach.
resultsWe included 142 studies that described a spectrum of engagement. In general, engagement was feasible in most settings and most commonly done in the beginning of research (agenda setting and protocol development) and less commonly during the execution and translation of research. We found no comparative analytic studies to recommend a particular method. Patient engagement increased study enrollment rates and aided researchers in securing funding, designing study protocols and choosing relevant outcomes. The most commonly cited challenges were related to logistics (extra time and funding needed for engagement) and to an overarching worry of a tokenistic engagement.
conclusionsPatient engagement in healthcare research is likely feasible in many settings. However, this engagement comes at a cost and can become tokenistic. Research dedicated to identifying the best methods to achieve engagement is lacking and clearly needed.
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.