WASHINGTON, D.C. – Improving health care delivery requires that all stakeholders within the delivery system actively partner with patients and families – central to the concept of patient and family engagement – to create change in how care is received. Yet meaningful patient and family engagement remains the exception not the rule. While there are many notable individuals and organizations with rich experience, efforts to advance patient and family engagement have remained siloed and lacked a unified vision for how proven practices and innovative ideas can be broadly translated into improvements in how care is delivered. Today, the Gordon and Betty Moore Foundation, in collaboration with the American Institutes for Research, released the first unifying “Roadmap for Patient and Family Engagement in Healthcare Practice and Research.” The project was guided by a steering committee of top leaders in health care representing a diverse set of interests. 

“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,” said Dominick Frosch, PhD, Fellow at the Gordon and Betty Moore Foundation. “The evidence on the benefits of patient and family engagement is so compelling that it has been called the ‘blockbuster drug of the century’ and it’s why we are working to advance this field, beginning with this Roadmap.”

The Roadmap, found at www.patientfamilyengagement.org, builds on decades of evidence, knowledge and experience from more than 70 individuals and 60 organizations representing patients, health care professionals, payers, purchasers and policymakers. It fills a critical gap in providing unified best practices and clear, sustainable actions for how to partner with patients and families to improve the delivery of health care.

“The Patient and Family Engagement Roadmap includes simple, practical actions that all participants in the health care system can take today to effectively partner with patients and families to improve how care is delivered, how health care delivery is designed and governed and ensure that policy is responsive to their needs,” said Kristin Carman, Vice President, Health Policy Research, Health and Social Development Program at the American Institutes for Research.  

The Roadmap includes eight key strategies, with specific hands-on tactics, for meaningful patient and family engagement to reach the end goals of improving the patient experience of care, improving health outcomes and reducing costs. The strategies are based on proven practices and promising pathways:

  1. Patient and Family Preparation: Educate, prepare and empower patients and family members to engage effectively in their health and health care
  2. Clinician and Leadership Preparation:Educate, prepare and empower clinicians and health care leaders to partner effectively with patients and families
  3. Care and System Redesign: Redesign system processes, policies and structures to provide opportunities for and support of partnerships between patients, families and the health care team
  4. Organizational Partnership: Redesign health care organizations to make patients and families part of the governance structure
  5. Measurement and Research: Create measures and conduct research to improve care, facilitate changes in processes and assess the relationships between outcomes, experiences and engagement
  6. Transparency and Accountability:Make data and information transparent to promote organizational accountability for quality and safety and to enable patients and families to be active in their health and health care
  7. Legislation and Regulation: Encourage patient and family engagement through regulation and legislation
  8. Partnership in Public Policy: Identify and provide opportunities to integrate patient and family perspectives into public policy

In presenting the eight strategies, the Roadmap illustrates what aspect of care delivery each one affects: at the direct care, organizational or policy levels. It also speaks to each unique audience – patients, health care professionals, organizations, leaders, insurers, employers and researchers – by giving five, relevant actions they can do today to support and advance patient and family engagement.

“Partnering with patients and their families can lead to improvements in patient safety and quality, better patient experience and satisfaction, health care workforce satisfaction and retention, better health outcomes and lower health care costs,” said Debra Ness, President of the National Partnership for Women and Families. “We are asking others to use this Roadmap and make a real commitment to take action.”

More details on the Roadmap, including how it can be used by various stakeholders within the health care delivery system, will be shared during a webinar on October 7, 2014 at 3:30 pm ET. Register here: https://air-license.webex.com/air-license/onstage/g.php?t=a&d=598848559.

American Institutes for Research

Established in 1946, with headquarters in Washington, D.C., the American Institutes for Research (AIR) is a nonpartisan, not-for-profit organization that conducts behavioral and social science research and delivers technical assistance both domestically and internationally in the areas of health, education, and workforce productivity. For more information, visit www.air.org.

The Gordon and Betty Moore Foundation

The Gordon and Betty Moore Foundation believes in bold ideas that create enduring impact in the areas of patient care, environmental conservation and science. The foundation’s patient care program focuses on eliminating preventable harms and unnecessary health care costs by meaningfully engaging patients and families in a redesigned, supportive health care system.



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