A Roadmap for Patient and Family Engagement

PCE 27Blog post by Gordon and Betty Moore Foundation and American Institutes for Research

As the U.S. health care system tackles the Triple Aim of better experiences of care, better population health and lower costs, it is imperative for health professionals to meaningfully partner with patients and families—bringing patient and family voices to decisions about care, to health care organizational design and governance, and to public policy. Meaningfully engaging patients and families at every level leads to:

  • Improvements in safety and quality
  • Better patient experiences and satisfaction
  • Increased health professional satisfaction and retention
  • Better health outcomes
  • Lower health care costs

Yet, despite the evidence, and being deemed the “blockbuster drug of the century,” patient and family engagement remains the exception not the rule. The Affordable Care Act has increased the incentive for health care organizations to engage patients and families, but health professionals and organizations need practical, concrete ways to do so. Complicating this is the lack of a unified vision within the diverse field of patient and family engagement, which has hindered the translation of effective strategies – from innovation to widespread routine practice.

HCLDR Blog ImageTo fill this critical gap, the Gordon and Betty Moore Foundation (@MoorePatient) engaged the American Institutes for Research (@AIRCPCE) to convene a diverse group of stakeholders to forge a unified vision for achieving meaningful patient and family engagement across the U.S. health care system, resulting in “A Roadmap for Patient + Family Engagement in Healthcare.” The purpose of this Roadmap (#PFEroadmap) is to help drive action toward the end goals of patient and family engagement and work towards a transformed health care delivery system—one where patients and families are meaningfully engaged in every aspect of health and health care.

Understanding that true patient and family engagement requires all players in the health system to work together, the Roadmap lays out eight specific strategies for change geared toward the direct care, organizational and policy levels. For each change strategy, the Roadmap provides a brief description of what it entails and specific tactics that can advance the strategy. The tactics are drawn from existing research evidence and promising directions where sufficient evidence may still be lacking. The Roadmap also includes milestones that can help in assessing implementation progress and results.

These change strategies and the accompanying tactics are intended to ignite change, but it’s also important to think about the simple things that can be done right now that will make a difference. Within the Roadmap there are Five Simple Actions that each player – patient, family member, clinician, organizational leader, policymaker, insurer, employer or researcher – can take today. For example, if you are a health care leader you can:

  • Welcome input and feedback from patients and families
  • Maximize the potential of your patient portal
  • Use teach-back and other proven communications techniques
  • Ask patients what is important to them
  • Contact your professional societies and encourage them to include patient and family representatives as part of the process when setting clinical recommendations or guidelines

In the next #hcldr twitter chat on December 16, we’ll kick off the first of a two-part series on the importance of and need for meaningful patient and family engagement and what it looks like across the continuum of care. The first chat will focus on how we create shared partnership in the delivery of health care – and the questions we’ll discuss are noted below. The second chat will focus on how we shift the culture of health care to one where patient and family engagement is a norm and not the exception. Leading the first chat on December 16 is Dominick Frosch, Ph.D. (@dlfrosch), fellow at the Gordon and Betty Moore Foundation (@MoorePatient) and Kristin Carman (@kristinlcarman), vice president, at the American Institutes for Research (@AIRCPCE).

Please join us on the next #hcldr weekly tweetchat – Tuesday December 16th at 8:30pm Eastern (for your local time click here) when we will be discussing the following topics:

  • T1: What would our health care system look like if we had true patient and family engagement?
  • T2: What challenges have to be overcome for more patients and family members to be engaged in their health?
  • T3: What support, resources or information do patients and families need?
  • T4: What support, resources or information do clinicians and health care leaders need?

[#hcldr Moderator note: Special thanks to Amy Berman (@NotesOnNursing) for connecting us with the wonderful folks at the Gordon and Betty Moore Foundation and the American Institutes for Research. It was Amy’s passion for this topic that was the spark that made this collaborative chat possible. Thank you Amy!!!]


“The IHI Triple Aim”, Institute for Healthcare Improvement, http://www.ihi.org/Engage/Initiatives/TripleAim/Pages/default.aspx, accessed December 10 2014

“Rx For the ‘Blockbuster Drug’ of Patient Engagement”, Susan Dentzer, HealthAffairs, February 2013, http://content.healthaffairs.org/content/32/2/202.full, accessed December 10 2014

“Key Features of the Affordable Care Act”, US Department of Health & Human Services, http://www.hhs.gov/healthcare/facts/timeline/index.html, accessed December 10 2014

“A Roadmap for Patient + Family Engagement in Healthcare – Practice and Research”, Gordon and Betty Moore Foundation / American Institute for Research, 2014, http://patientfamilyengagement.org/, accessed December 10 2014

“Patient Engagement is the Blockbuster Drug of the Century”, Dave Chase, Forbes, September 9 2012, http://www.forbes.com/sites/davechase/2012/09/09/patient-engagement-is-the-blockbuster-drug-of-the-century/, accessed December 10 2014

“The Blockbuster Drug of the Century: An Engaged Patient”, Leonard Kish, HL7 Standards, August 28 2012, http://www.hl7standards.com/blog/2012/08/28/drug-of-the-century/, accessed December 10 2014

“e-Patient Manifesto: “Patients Included”, Casey Quinlan, e-patients.net, November 18 2013, http://e-patients.net/archives/2013/11/e-patient-manifesto-patients-included.html, accessed December 10 2014

“Patient and family engagement: a framework for understanding the elements and developing interventions and policies.”, Carman KL, Dardess P, Maurer M, et al. Health Affairs (Millwood). Feb 2013;32(2):223-231, http://www.air.org/resource/era-patient-engagement, accessed December 10 2014





  1. […] and Better Moore Foundation (@MoorePatient) and American Institutes for Research (@AIRCPCE) – A Roadmap for Patient and Family Engagement – Dec […]

  2. […] for Patient and Family Engagement”, Dominick L Frosch, HCLDR Blog, December 11 2014,  https://hcldr.wordpress.com/2014/12/11/pferoadmap/, accessed April 1 […]

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