National Academy of Medicine
Discussion Paper

Harnessing Evidence and Experience to Change Culture: A Guiding Framework for Patient and Family Engaged Care

By Susan B. Frampton, Sara Guastello, Libby Hoy, Mary Naylor, Sue Sheridan, and Michelle Johnston-Fleece
January 31, 2017

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Patient and family engaged care (PFEC) is care planned, delivered, managed, and continuously improved in active partnership with patients and their families (or care partners as defined by the patient) to ensure integration of their health and health care goals, preferences, and values. It includes explicit and partnered determination of goals and care options, and it requires ongoing assessment of the care match with patient goals. This vision represents a shift in the traditional role patients and families have historically played in their own health care teams, as well as in ongoing quality improvement and care delivery efforts. PFEC also represents an important shift from focusing solely on care processes to aligning those processes to best address the health outcomes that matter to patients. In a culture of PFEC, patients are not merely subjects of their care; they are active participants whose voices are honored. Family and/or care partners are not kept an arm’s length away as spectators, but participate as integral members of their loved one’s care team. Individuals’ (and their families’) expertise about their bodies, lifestyles, and priorities is incorporated into care planning and their care experience is valued and incorporated into improvement efforts.

PFECA prevalent and persistent challenge to a system-wide transformation to PFEC is uncertainty about whether the resource investment required will lead to better results. There is also a lack of clarity about how, practically speaking, to make it happen.

To address these barriers, the National Academy of Medicine’s (NAM’s) Leadership Consortium for a Value & Science-Driven Health System convened a Scientific Advisory Panel (SAP) to compile and disseminate important insights on culture change strategies. The SAP’s focus was on evidence-based strategies that facilitate patient and family engagement and are tied to research findings revealing improved patient care and outcomes. To achieve this goal, the SAP drew on both the scientific evidence and the lived experiences of patients, their care partners, practitioners, and leaders to develop a comprehensive framework that explicitly identifies specific high-impact elements necessary to create and sustain a culture of PFEC. Research in support of the various elements of the model was then compiled into a selected bibliography. This paper introduces the framework and associated evidence, along with practical examples of elements of the model applied in the “real world,” with the goal of supporting action that will pave the way for PFEC to become the norm in health care.

The SAP thoroughly discussed the terminology to use within the framework, cognizant that terms such as “person-centered” and “people-centered” are increasingly used in the field. Because this paper and the guiding framework it introduces are largely focused on care delivered by health care organizations to individuals accessing the system, the authors have chosen to use the term “patient and family” engaged care, while reserving the term “person and family engagement” for other health and health care activities aimed at engaging and empowering individuals in the community and/or outside a health care setting. Read more >>  

This discussion paper is a product of the National Academy of Medicine’s Leadership Consortium for a Value and Science-Driven Health System.

The Leadership Consortium for a Value & Science-Driven Health System is comprised of senior leader and innovator members whose organizations work collaboratively through the National Academy of Medicine in advancing progress toward a continuously learning health system, care that is more efficient and effective, and better health for Americans.

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Disclaimer: The views expressed in this paper are those of the authors and not necessarily of the authors’ organizations, the National Academy of Medicine (NAM), or the National Academies of Sciences, Engineering, and Medicine (the National Academies). The paper is intended to help inform and stimulate discussion. It is not a report of the NAM or the National Academies. Copyright by the National Academy of Sciences. All rights reserved.