PFAC Leadership ToolkitPatients. Leaders. Experience.

AMA 11 • Research • Guidance • Public resources

A source layer that keeps different kinds of evidence separate.

Peer-reviewed research, implementation guidance, public data, and lived-experience resources are grouped separately so the toolkit does not treat guidance or patient stories as causal evidence.

ResearchPFAC operations, patient safety, representation, co-production, patient advisors, and learning systems.
GuidanceAHRQ, IPFCC, AMA STEPS Forward, Leapfrog, and comparable health-system resources.
Story resourcesRosie Bartel is acknowledged as a lived-experience anchor, not treated as peer-reviewed evidence.

Core research evidence

Peer-reviewed sources used in the current synthesis and matrix.

  1. 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.
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. Batalden P, Foster T. From assurance to coproduction: a century of improving the quality of health-care service. Int J Qual Health Care. 2021;33(suppl 2):ii10-ii14. doi:10.1093/intqhc/mzab059
  9. Joseph AL, Monkman H, Kushniruk A, Quintana Y. Exploring patient journey mapping and the learning health system: scoping review. JMIR Hum Factors. 2023;10:e43966. doi:10.2196/43966
  10. 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
  11. Doyle C, Lennox L, Bell D. A systematic review of evidence on the links between patient experience and clinical safety and effectiveness. BMJ Open. 2013;3:e001570. doi:10.1136/bmjopen-2012-001570
  12. Carman KL, Dardess P, Maurer M, et al. Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Aff (Millwood). 2013;32(2):223-231. doi:10.1377/hlthaff.2012.1133

Federal and implementation guidance

Authoritative and practical resources used for comparison and adaptation.

  1. Agency for Healthcare Research and Quality. Resources by the CMS Patient Safety Structural Measure Domains. AHRQ. Accessed September 7, 2026.
  2. Agency for Healthcare Research and Quality. Guide to Patient and Family Engagement in Hospital Quality and Safety. AHRQ. Accessed September 7, 2026.
  3. Agency for Healthcare Research and Quality. Strategy 1: Working With Patients and Families as Advisors. AHRQ. Accessed September 7, 2026.
  4. Agency for Healthcare Research and Quality. MRSA Prevention Toolkit: Targeting SSI. AHRQ. Accessed September 7, 2026.
  5. Institute for Patient- and Family-Centered Care. Reflecting Our Community: A Toolkit for Strengthening PFACs. IPFCC. Accessed September 7, 2026.
  6. American Medical Association. Patient and Family Advisory Councils: Provide Patient-Centered Care by Leveraging the Role of PFACs in Your Organization. AMA STEPS Forward. Accessed September 7, 2026.
  7. Johns Hopkins Medicine. Patient and Family Advisory Councils. Accessed September 7, 2026.
  8. Massachusetts General Hospital. Patient and Family Advisory Councils. Accessed September 7, 2026.
  9. The Leapfrog Group. Patient and Family Advisory Council Toolkit for Exploring Diagnostic Quality. Accessed September 7, 2026.
  10. Betsy Lehman Center for Patient Safety. PFAC Resource Library. Accessed September 7, 2026.

Open data and public resources

Sources used for validation, local context, and benchmarking.

  1. Centers for Disease Control and Prevention. Healthcare-Associated Infections Data. CDC. Accessed September 7, 2026.
  2. Centers for Disease Control and Prevention. Methicillin-resistant Staphylococcus aureus (MRSA). CDC. Accessed September 7, 2026.
  3. Centers for Medicare & Medicaid Services. Provider Data Catalog. CMS. Accessed September 7, 2026.
  4. Agency for Healthcare Research and Quality. CAHPS: Consumer Assessment of Healthcare Providers and Systems. AHRQ. Accessed September 7, 2026.
  5. National Library of Medicine. PubMed. National Center for Biotechnology Information. Accessed September 7, 2026.
  6. Dartmouth Hitchcock Medical Center, Alice Peck Day Memorial Hospital, and Visiting Nurse and Hospice for Vermont and New Hampshire. Fiscal Year 2025 Community Health Needs Assessment. Dartmouth Health. Accessed September 7, 2026.

Story and acknowledgement resources

Rosie Bartel as lived-experience anchor.

  1. Sepsis Alliance. Rosie Bartel. Faces of Sepsis. Accessed September 7, 2026.
  2. One Health Trust. “My life is never going to be normal again”: the toll of antibiotic resistance. One World, One Health Podcast. Accessed September 7, 2026.
  3. Association for Professionals in Infection Control and Epidemiology. From MRSA to influence: a patient’s path to advocacy. 5 Second Rule Podcast. Accessed September 7, 2026.
  4. Health Quality & Safety Commission New Zealand. One is too many: viewing infection data from the patient’s perspective. Accessed September 7, 2026.