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National Academy of Medicine Discussion Paper Presents New Framework to Guide Patient and Family Engaged Care

Penn Nursing’s Mary Naylor, PhD, RN, FAAN, Serves as a Member of the Scientific Advisory Panel and Co-author for the Discussion Paper.

Past reports from the National Academy of Medicine (NAM) (formerly Institute of Medicine) and others have concluded that the involvement of patients and families is key to the national strategy of realizing a high quality, high value health system that achieves patient-centered outcomes.

A new discussion paper published by the NAM builds on this concept, and asserts that a cultural shift to “patient and family engaged care” is an essential driver to achieving the “Quadruple Aim” outcomes of better culture, better care, better health, and lower costs. By introducing the term patient and family engaged care, the authors recognize the evolution of the field toward embracing partnership—working with patients and families, not simply doing to and for them. 

In addition, the authors lay out a novel Guiding Framework for creating and sustaining a culture of patient and family engaged care. Grounded in scientific evidence and the lived experience of patients, their care partners, practitioners, and health system leaders, the Guiding Framework provides a pathway for organizations to create and sustain a culture of patient and family engaged care, including practical real-world examples.

“This paper discusses the challenges and opportunities that many health care leaders, clinicians, and patients and their care partners face in paving the way for patient and family engaged care to become the norm in health care,” said Victor Dzau, MD, President of the National Academy of Medicine.

The discussion paper was developed in collaboration with the Care Culture and Decision-Making Innovation Collaborative (CCDMIC), which operates under the auspices of the NAM’s Leadership Consortium for a Value and Science-Driven Health System, chaired by Mark McClellan, director of the Duke-Margolis Center for Health Policy. The CCDMIC is chaired by Mary Naylor, PhD, RN, FAAN, the Marian S. Ware Professor in Gerontology, and Director of the NewCourtland Center for Transitions and Health at the University of Pennsylvania School of Nursing, and Bill Novelli, Professor at Georgetown University and Co-Chair of the Coalition to Transform Advanced Care (C-TAC). The CCDMIC convened a Scientific Advisory Panel of 25 experts over 6 months to (1) identify elements and factors that consistently emerge as essential to creating and maintaining a culture of patient and family engaged care; (2) organize those tools, strategies, and cultural elements into an easy-to-follow framework; (3) compile evidence in support of the framework; and (4) identify gaps and opportunities.

Members of the Scientific Advisory Panel that guided the development of the discussion paper include:

  • Jim Atty, FACHE, Waverly Health Center
  • Bruce J. Avolio, PhD, University of Washington
  • Michael Barry, MD, Healthwise; Harvard Medical School
  • Julie Béliveau, MBA, DBA, Université de Sherbrooke
  • Sheila Bosch, PhD, LEED AP, EDAC, University of Florida
  • Eric A. Coleman, MD, MPH, University of Colorado, Denver
  • Susan Frampton, PhD, Planetree (Chair)
  • Dominick Frosch, PhD, Palo Alto Medical Foundation Research Institute
  • Sara Guastello, Planetree
  • Jill Harrison, PhD, Planetree
  • Judith Hibbard, DrPH, University of Oregon
  • Mohammadreza Hojat, PhD, Thomas Jefferson University
  • Libby Hoy, PFCCpartners
  • Harlan M. Krumholz, Yale University
  • Laura McClelland, PhD, Virginia Commonwealth University
  • Mary Naylor, PhD, FAAN, RN, University of Pennsylvania School of Nursing
  • David P. Rakel, MD, University of New Mexico
  • Helen Riess, MD, Massachusetts General Hospital; Empathetics, Inc.
  • Ann-Marie Rosland, MD, MS, University of Michigan Medical School; VA Center for Clinical Management Research
  • Joel Seligman, Northern Westchester Hospital
  • Sue Sheridan, MBA, MIM, DHL, Patient-Centered Outcomes Research Institute
  • Jean-Yves Simard, Université de Montréal
  • Tim Smith, MPH, Sharp Memorial Hospital
  • Susan Stone, PhD, RN, NEA-BC, Sharp Coronado Hospital
  • Carol Wahl, RN, MSN, MBA, CHI Health Good Samaritan

The views expressed in this discussion paper are those of the authors and not necessarily of the authors’ organizations, the NAM, or the National Academies of Sciences, Engineering, and Medicine (National Academies). The discussion paper is intended to help inform and stimulate discussion. It has not been subjected to the review procedures of, nor is it a report of, the NAM or the National Academies.

To download the discussion paper and framework, please visit nam.edu/PFEC.