PFAC Leadership ToolkitPatients. Leaders. Experience.

Evidence type • limitation • leadership use • anticipated patient benefit

Claims stay attached to their evidence strength.

This matrix separates federal requirements, implementation guidance, empirical findings, conceptual frameworks, and leadership recommendations. It prevents the toolkit from implying causal benefit where the evidence does not support it.

Current evidence-to-action map

What leaders can reasonably conclude.

Source Evidence type What it supports Evidence strength / limitation Leadership action Anticipated patient benefit Measurement connection
AHRQ, CMS Patient Safety Structural Measure, Domain 5: Patient and Family Engagement Federal structural-measure guidance Patient and family engagement is part of the structural approach to patient safety, including formal mechanisms for patient and family input. Authoritative requirement/guidance layer. It establishes expected structure, not proof that a PFAC causes better clinical outcomes. Assign executive ownership, document the engagement structure, and connect patient/family input to safety governance and follow-through. Anticipated: patient and family concerns have a defined route into safety oversight and improvement work. Structural attestation, safety-input tracking, action closure, report-back.
Lewis et al, 2025 Scoping study of 143 PFAC articles PFAC engagement ranges from approval to feedback to co-design; training and leadership are frequently cited success factors. Broad literature map across 143 articles, but only a small subset reported measured project outcomes and attribution was difficult. Do not equate PFAC existence with effectiveness. Specify engagement level, training, leadership support, work products, and measurement. Anticipated: a more operationally mature council is better positioned to contribute meaningful patient/family input. Engagement level, training completion, project count, outcome-measure availability.
Lewis et al, 2026 Quantitative U.S. survey, 203 respondents Greater leadership support was significantly associated with more meeting content, stronger measurement practices, greater decision involvement, and more policy/procedure input. Current national empirical evidence and validated survey design, but cross-sectional associations do not establish causality and convenience sampling limits generalizability. Make executive sponsorship and operational champion support explicit; require departments to bring substantive work to the council and measure follow-through. Anticipated: patient/family advisors have more meaningful opportunities to influence decisions rather than serving a ceremonial role. Executive-support rating, agenda utilization, policy input, decision involvement, measurement frequency.
Rramani Dervishi et al, 2026 Rapid scoping review focused on PFACs and patient safety PFAC participation in patient safety is feasible and potentially valuable, but approaches and evidence are heterogeneous. Useful current synthesis for safety application; heterogeneity and limited outcome evidence constrain strong causal conclusions. Define concrete safety functions for the PFAC and evaluate the process and outputs before claiming safety impact. Anticipated: patient and family safety concerns are incorporated more systematically into learning and redesign. Safety topics reviewed, recommendations made, actions closed, escalation pathways changed.
Leia et al, 2025 Scoping review of 43 studies on diverse PFAC recruitment and engagement PFACs can remain socio-demographically homogeneous and may overlook populations including people with disabilities, migrants, and people with lived experience of homelessness. Strong relevance to representation and access; scoping-review evidence identifies barriers/facilitators rather than proving a single recruitment strategy improves outcomes. Assess who is represented, who is missing, participation barriers, compensation, language access, disability access, geography, and recruitment channels. Anticipated: council input better reflects populations that may otherwise be excluded from health-system decisions. Representation profile, recruitment sources, participation barriers, retention, accommodation use.
Oldfield et al, 2019 Systematic review Patient, family, and community advisory councils provide formal structures for engagement across healthcare and research contexts. Useful synthesis of council structures and functions; heterogeneity and limited evaluation constrain outcome attribution. Define governance, representation, scope, decision pathways, and documentation before evaluating council contribution. Anticipated: patient and family perspectives enter improvement work through a formal, repeatable channel. Governance completeness, representation, recommendation tracking, action closure.
Sharma et al, 2017 Systematic review Patient advisors were involved in varied healthcare-improvement activities, but evidence connecting advisor participation to patient outcomes was limited. The review found important evidence gaps, including a lack of prospective experimental studies assessing patient outcomes. Measure advisor contribution and implementation outputs directly instead of assuming downstream outcome effects. Anticipated: leaders can distinguish visible participation from documented influence on improvement work. Recommendation adoption, action completion, decision participation, project-specific measures.
Batalden et al, 2016 Conceptual co-production framework Healthcare services are co-produced through relationships and activities between professionals and people receiving care. Influential conceptual framework, not an effectiveness trial. Use patient and family input during design and redesign, not only after decisions are made. Anticipated: services are more responsive to how care is actually experienced and used. Co-design participation, stage of involvement, changes attributable to co-design input.
Oliver et al, 2019 Patient-reported data action framework and case examples Feedback and feed-forward processes can help convert patient-reported information into informed decisions. Strong operational logic and case-based application; not direct evidence that a PFAC itself improves outcomes. Build a capture, interpret, assign, act, report-back, and reassess cycle for patient/family input. Anticipated: patient-reported signals are less likely to accumulate without ownership or response. Signal-to-owner time, action closure, report-back rate, reassessment completion.

AMA 11 references

Core citation layer.

  1. Agency for Healthcare Research and Quality. Resources by the CMS Patient Safety Structural Measure Domains. AHRQ. Accessed September 7, 2026.
  2. Lewis B, Cochran C, Marquez E, et al. Use of hospital patient and family advisory councils: a scoping study. J Patient Exp. 2025;12:23743735251316995. doi:10.1177/23743735251316995. PMID:39931354; PMCID:PMC11808756.
  3. Lewis B, Cochran C, Shoemaker S, et al. Hospital patient and family advisory councils: a quantitative study on how councils are used and predictors of effective councils. J Patient Exp. 2026;13:23743735261415786. doi:10.1177/23743735261415786
  4. Rramani Dervishi Q, Blum Y, Brust L, Weigl M. Engaging patient and family advisory councils (PFACs) in patient safety in healthcare organisations: a rapid scoping review. BMJ Open Qual. 2026;15(1):e004040. doi:10.1136/bmjoq-2025-004040
  5. Leia MP, See K, Cuthbert C. Barriers and facilitators to the recruitment and engagement of diverse populations into patient and family advisory councils: a scoping review. J Patient Exp. 2025;12:23743735251376068. doi:10.1177/23743735251376068
  6. Oldfield BJ, Harrison MA, Genao I, et al. Patient, family, and community advisory councils in health care and research: a systematic review. J Gen Intern Med. 2019;34(7):1292-1303. doi:10.1007/s11606-018-4565-9
  7. Sharma AE, Knox M, Mleczko VL, Olayiwola JN. The impact of patient advisors on healthcare outcomes: a systematic review. BMC Health Serv Res. 2017;17:693. doi:10.1186/s12913-017-2630-4
  8. Batalden M, Batalden P, Margolis P, et al. Coproduction of healthcare service. BMJ Qual Saf. 2016;25(7):509-517. doi:10.1136/bmjqs-2015-004315
  9. Oliver BJ, Nelson EC, Kerrigan CL. Turning feed-forward and feedback processes on patient-reported data into intelligent action and informed decision-making: case studies and principles. Med Care. 2019;57(suppl 5 suppl 1):S31-S37. doi:10.1097/MLR.0000000000001088