Listed Alphabetically by Title
Advancing the Practice of Patient- and Family-Centered Care in Primary Care and other Ambulatory Settings: How to Get Started. Bethesda, MD: Institute for Family-Centered Care.
Offers a philosophical overview of patient- and family-centered care along with assessments and surveys for practice’s to gauge staff perspective and readiness in shifting towards increased patient-family partnerships. Of note, Part V provides important guidance, with specific suggestions, for identifying and developing patient- family leadership.
Consumer Involvement Toolkit: A Resource for State Agencies. Community First Systems Transformation Grant, in Collaboration with the University of Massachusetts Medical School Office of Long-Term Support Studies. Boston, Massachusetts: June 2010.
The Commonwealth of Massachusetts was awarded a five-year Systems Transformation grant from the Centers for Medicare and Medicaid Services (CMS). The grantee’s mission was to transform the state's long-term support system for elders and people with disabilities served by the Executive Office of Health and Human Services (EOHHS) /Office of Disability Policies and Programs and the Executive Office of Elder Affairs (Elder Affairs). Stakeholders contributed to the publication’s identification of key development areas for meaningful engagement. Emerging patient and family advisory councils can benefit from this structured approach to consumer involvement.
Creating Patient and Family Advisory Councils. Institute for Patient- and Family–Centered Care. Bethesda, Maryland: October 2010.
This brief provides an overview on developing a PFAC with clear identification of the basic structure of the council. Review of sections on orientation for new members and sustaining the council could be quite helpful to PFAC facilitators.
Webster, P. D., & Johnson, B. H. Developing and Sustaining a Patient and Family Advisory Council. Bethesda, MD: Institute for Patient- and Family-Centered Care, 2000.
This resource profiles consumer advisory councils, their structures, and activities. Guidance on establishing a new council and sustaining the momentum of an existing council is included. Descriptions include council responsibilities and the potential impact a council can have on an organization.
Jeppson, E. S., & Thomas, J. Essential Allies: Families as Advisors. Bethesda, MD: Institute for Patient- and Family-Centered Care, 1995.
This is a how-to manual on involving families as consultants and advisors in policy and program development. Included are examples and descriptions of how hospitals, state agencies, community programs, and universities foster collaboration and partnership between providers and families. This resource emphasizes approaches to involve families traditionally underrepresented in policy-making activities.
Fostering Consumer Engagement in Practice Transformation: A Toolkit for Practices on the Journey to Patient-Centered Medical Homes. Massachusetts Patient-Centered Medical Home Initiative, 2011.
This publication focuses on engaging consumers in health care practices with an emphasis on quality improvement. Suggestions for developing advisory councils and using focus groups as well.
Brown, L., and West, M. Patient and Family Advisory Council: Getting started Toolkit. BJC Health Care (Barnes Jewish St. Peters Hospital).
This is a step-by-step guide for creating a Family Advisory Council that addresses all elements of beginning a PFAC including a helpful pre-planning checklist and descriptions of the various roles within the council.
Aquino, E., Bristol, T.E., Crowe, V., DesGeorges, J., & Heinrich, P., Gordon, A. (ed).
Powerful Partnerships: A Handbook for Families and Providers Working Together to Improve Care. Boston, MA: National Initiative for Children’s Healthcare Quality.
This guide is intended to help both family members and healthcare professionals who are working together to improve care for children with special healthcare needs. Joining together in multi-disciplinary teams, family members and providers are increasingly working as equal partners to improve care. Collaborating as equals may be new for family members and providers. This guide includes information and guidance on how to get the most out of this potentially powerful partnership.
Thomas, J., &. Jeppson, E. S. Words of Advice: A Guidebook for Families Serving As Advisors. Bethesda, MD: Institute for Patient- and Family-Centered Care, 1997.
This publication is a practical step-by-step guide for conducting training sessions for families and providers to increase the involvement of families serving in advisory roles.
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