SynthesisJAMA network open2022
Patient and Family Representation in Randomized Clinical Trials Published in 3 Medical and Surgical Journals: A Systematic Review.
Synthesis in JAMA network open, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers, 1 of them a synthesis 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
23 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Pooled it
- The Design of a Patient-Centered Hierarchal Composite Outcome for a Multi-Center Randomized Controlled Trial in Metastatic Bone Disease.Current oncology (Toronto, Ont.) · 2025Trial
- Trends in patient and public involvement in health research 2000-2024.Research involvement and engagement · 2026Review
- Article
- Patient and public involvement in pragmatic trials with older adults: a multi-methods study of researchers' experiences.BMC geriatrics · 2026Article
- Article
- A meta-review of patient engagement, shared decision-making, and factors influencing equity-deserving populations' participation in clinical trials.Research involvement and engagement · 2026Review
- Who is the emergency care community? A qualitative exploration of stakeholder roles and relationships in engaged research within a South African provincial emergency care system.African journal of emergency medicine : Revue africaine de la medecine d'urgence · 2026Article
- Implementation strategies and outcomes of intravenous iron use for treatment of anaemia during and after pregnancy in low- and middle-income countries: A scoping review.PLOS global public health · 2026Article
- Operationalizing Trauma-Informed Principles to Build Safe, Inclusive, and Equitable Patient Partnerships in Pediatric Pain Research.Journal of pain research · 2026Article
- Experiences of Discharge Preparedness Among Patients with Chronic Heart Failure and Their Caregivers: A Phenomenological Study.Patient preference and adherence · 2026Article
- Recognition, remuneration and reimbursement of patient and public involvement partners in pragmatic randomised controlled trials. A survey of author practices.Research involvement and engagement · 2025Article
- Patient involvement in the design of ALIDHE: a study of ivosidenib + azacitidine in newly diagnosedFuture oncology (London, England) · 2025Article
- How are patient partners involved in health service research? A scoping review of reviews.Research involvement and engagement · 2025Review
- CONSORT 2025 explanation and elaboration: updated guideline for reporting randomised trials.BMJ (Clinical research ed.) · 2025Article
- Young-onset metastatic colorectal cancer: an opportunity and a vision for progress in cancer.Medical oncology (Northwood, London, England) · 2025Review
- Review of clinical trials and guidelines for children and youth with mucopolysaccharidosis: outcome selection and measurement.Orphanet journal of rare diseases · 2024Review
- Article
- An online evidence-based dictionary of common adverse events of antidepressants: a new tool to empower patients and clinicians in their shared decision-making process.BMC psychiatry · 2024Article
- Insights into epileptogenesis from post-traumatic epilepsy.Nature reviews. Neurology · 2024Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Importance: Patient and family engagement in research may improve the design, conduct, and dissemination of clinical research, but little is known about whether these stakeholder groups are involved in the design and conduct of randomized clinical trials. Objective: To characterize the involvement and role of patient and family representatives in the design and conduct of randomized clinical trials by reviewing randomized clinical trials from 3 peer-reviewed medical and surgical journals with high impact factors. Evidence Review: In this systematic review, the first 50 consecutive randomized clinical trials published on or after January 1, 2021, until September 30, 2021, from each of 3 medical and surgical journals with high impact factors were reviewed for patient or family involvement in trial design and/or conduct. The manuscript, supplemental data, and trial registry records were searched for trial design and governance structures. Two independent, blinded reviewers screened citations and extracted data. This study followed the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guidelines. Findings: Only 7 of 150 randomized clinical trials (5%) reported patient or family representation in their study design or conduct. Most studies with patient or family representation (n = 5) were from a single journal. Stakeholder involvement was mainly in the execution phase (n = 7), although in 2 studies stakeholders were also involved in the translation phase. Conclusions and Relevance: The findings of this systematic review suggest that patient or family involvement in the design and conduct of randomized clinical trials in the publications with high impact factors is lacking. We found that when patient or family groups are involved in research, the focus was mainly on the execution phase of research design. There is a need to increase stakeholder involvement in the research design, conduct, and translation of randomized clinical trials.
Indexed as
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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.