ArticleThe patient2018
Patient and Family Advisory Councils (PFACs): Identifying Challenges and Solutions to Support Engagement in Research.
Article in The patient, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 42 papers.
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
42 citing papers in PubMed.
- Developing best practices for engaging and involving palliative care patients in research in sub-Saharan Africa.Research involvement and engagement · 2026Article
- Prevalence and Characteristics of Potentially Avoidable Interhospital Transfers.JAMA network open · 2026Article
- Building meaningful partnerships: engaging and co-developing a patient advisory council to inform the implementation of person-centred quality indicators in Alberta primary care.Research involvement and engagement · 2026Article
- The Value and Challenges of Stakeholder Engagement in Rehabilitation Learning Health Systems: A Qualitative Pilot Study of Rehabilitation Directors.Learning health systems · 2026Article
- Evaluating the Process of Patient Engagement: Insights from a Mixed-Methods Evaluation of a Cancer Center Patient Advisory Group.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Strategies for engaging individuals with traumatic brain injury and cognitive impairment in virtual research settings.Research involvement and engagement · 2026Article
- Article
- Patient and Family-Centered Care to Promote Inpatient Safety: An Exploration of Nursing Care and Management Processes.Nursing reports (Pavia, Italy) · 2025Article
- Development of a Tool to Measure Potentially Inappropriate Inter-Hospital Transfer (IHT): The POINT Study.Journal of general internal medicine · 2025Article
- Supporting consumer engagement in health research about chronic conditions: a scoping review of evidence-based resources.Research involvement and engagement · 2025Review
- Understanding Patient Perspectives in Treatment and Management of Care in Asthma.Patient preference and adherence · 2025Article
- Public and participant involvement as a pathway to inclusive dementia research.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Article
- Design for innovation: centering the patient voice in the development of trauma clinical guidance.Trauma surgery & acute care open · 2025Article
- Conducting Patient-Oriented Research in Pediatric Populations: A Narrative Review.Children (Basel, Switzerland) · 2024Review
- Quality Indicators for Transition from Pediatric to Adult Care for Youth With Chronic Conditions: Proposal for an Online Modified Delphi Study.JMIR research protocols · 2024Article
- Article
- Establishing a Research-Related Patient and Family Advisory Council for a Surgical Specialty.Journal of hand surgery global online · 2024Article
- Navigating meaningful engagement: lessons from partnering with youth and families in brain-based disability research.Research involvement and engagement · 2024Article
- Conceptualizing and redefining successful patient engagement in patient advisory councils in learning health networks.Learning health systems · 2024Article
- #HowNotToDoPatientEngagement: the engaging with purpose patient engagement framework based on a twitter analysis of community perspectives on patient engagement.Research involvement and engagement · 2023Article
Corrections and comments
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Authors and funding
13 authors.
Funding
Abstract
objectiveThe aim was to describe barriers to patient and family advisory council (PFAC) member engagement in research and strategies to support engagement in this context.
methodsWe formed a study team comprising patient advisors, researchers, physicians, and nurses. We then undertook a qualitative study using focus groups and interviews. We invited PFAC members, PFAC leaders, hospital leaders, and researchers from nine academic medical centers that are part of a hospital medicine research network to participate. All participants were asked a standard set of questions exploring the study question. We used content analysis to analyze data.
resultsEighty PFAC members and other stakeholders (45 patient/caregiver members of PFACs, 12 PFAC leaders, 12 hospital leaders, 11 researchers) participated in eight focus and 19 individual interviews. We identified ten barriers to PFAC member engagement in research. Codes were organized into three categories: (1) individual PFAC member reluctance; (2) lack of skills and training; and (3) problems connecting with the right person at the right time. We identified ten strategies to support engagement. These were organized into four categories: (1) creating an environment where the PFAC members are making a genuine and unique contribution; (2) building community between PFAC members and researchers; (3) best practice activities for researchers to facilitate engagement; and (4) tools and training.
conclusionBarriers to engaging PFAC members in research include patients' negative perceptions of research and researchers' lack of training. Building community between PFAC members and researchers is a foundation for partnerships. There are shared training opportunities for PFAC members and researchers to build skills about research and research engagement.
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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.