About the Patient and Family Leadership Network

The Patient & Family Leadership Network (PFLN) supports ongoing communication, collaboration, and synergy among patient and family thought leaders to advance their equal and full engagement across the health care continuum: as equal and effective partners in care decisions, at the community and organizational level through continuous improvement initiatives, and at the policy level. The PFLN is a vibrant virtual Network that engages the nation’s patients and families in serving as effective leaders and advisors to the National Academy of Medicine and others to achieve better culture, better care, better value, and better health for all in a healthcare system that continuously learns and improves.

Harnessing Evidence and Experience to Change Culture: A Guiding Framework for Patient and Family Engaged Care, a discussion paper from the NAM,  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. Download the paper>>

Planetree’s Consumer-friendly Summaries of Harnessing Evidence and Experience to Change Culture: A Guiding Framework for Patient and Family Engaged Care: Planetree’s Patient and Family Partnership Council developed two consumer-friendly summaries of the NAM discussion paper Harnessing Evidence and Experience to Change Culture: A Guiding Framework for Patient and Family Engaged Care. The two summaries are for two distinct audiences–healthcare professionals and patients and families themselves. Focusing on the evidence base supporting patient- and family-engaged care, and “real world” suggestions for making patient and family engagement work, respectively, these summaries highlight the key elements of the discussion paper with applications for real life.

The Resource Compendium for Patient and Family Health Care Leadership was created to assist and to inform volunteer patient & family council leaders and such leaders have contributed valuable feedback from its inception to its completion. It presents summary informationon available evidence and information about the impact of patient and family engagement on health care outcomes and care improvement. It is intended to be a continuously updated living resource,and suggestions for inclusion are encouraged.      

Related NAM Activities, Discussion Papers, and National Academies reports

Vital Directions for Health and Health Care

More than 5 years after the passage of the Affordable Care Act, health reform is entering a critical new phase. The health system is strained by increasing demand and unsustainable costs. Too often, care decisions do not align with patient goals or evidence of effectiveness, and Americans experience untenable disparities in health and access to care. At the same time, new technologies and big data are spurring advances in medical science and the practice of care, including precision medicine. Patients are increasingly empowered to take an active role in their health, and community innovators are designing new models that could revolutionize the delivery of care. Increasing emphasis is placed on population health, wellness and prevention.

Action Collaborative on Clinician Well-Being and Resilience

Clinician well-being is essential for safe, high-quality patient care.

However, clinicians of all kinds, across all specialties and care settings, are experiencing alarming rates of burnout. Clinician burnout can have serious, wide-ranging consequences, from reduced job performance and high turnover rates to—in the most extreme cases—medical error and clinician suicide. On the other hand, clinician well-being supports improved patient-clinician relationships, a high-functioning care team, and an engaged and effective workforce. In other words, when we invest in clinician well-being, everyone wins. Supporting clinician well-being requires sustained attention and action at organizational, state, and national levels, as well as investment in research and information-sharing to advance evidence-based solutions. 

Patients and Health Care Teams Forging Effective Partnerships

In Patients and Health Care Teams Forging Effective Partnerships, the authors provide insight into how, by including patients and families as active participants in the health care team, the broad systemic movement toward team-based care can be enhanced. The discussion paper, published by the Institute of Medicine (IOM), builds upon previous work regarding the core principles of team-based care in order to help achieve three aims of better health, better care, and lower costs. The authors are participants in the Best Practices Innovation Collaborative of the IOM Roundtable on Value & Science-Driven Health Care. In their paper, the authors undertook both a detailed review of the literature and one-on-one interviews with patients and clinicians to suggest how to create health care teams that involve patients and meet their needs.

Shared Decision-Making Strategies for Best Care: Patient Decision Aids

In Shared Decision-Making Strategies for Best Care: Patient Decision Aids, the authors suggest concrete steps to fully integrate the ideals and practices of shared decision making (SDM) into routine clinical practice. The discussion paper, published by the Institute of Medicine (IOM), is a product of participants in the IOM’s Evidence Communication Innovation Collaborative. The authors identify key steps to shift expectations and behaviors of patients and clinicians: certifying decision aids, establishing measurement standards for SDM, using health information technology to facilitate information exchange, and expanding the role of employers and payers in supporting certified decision aids. In support of these steps, the authors summarize their views of the compelling case for implementing SDM, and underscore the potential benefits.

Making the Case for Continuous Learning from Routinely Collected Data

In Making the Case for Continuous Learning from Routinely Collected Data, the authors suggest that in order to achieve better health, patients and clinicians will need to view every health care encounter as providing an opportunity to improve outcomes. The paper cites widely reported examples of routinely collected digital health data being applied to improve services, inform patients, avoid harm, and speed research. Developed by individual participants from the IOM’s Clinical Effectiveness Research Innovation Collaborative, it asserts that patients and the public are the most effective advocates for resetting expectations that their data be used to advance knowledge and support continuous learning. Citing examples of efforts to engage patients and clinicians in continuous learning efforts, the authors see broader application of these approaches as critical to ensuring the success of a learning health system in achieving better care, lower costs and improved health.

Core Principles & Values of Effective Team-Based Health Care

This Discussion Paper, Core Principles & Values of Effective Team-Based Health Care, presents basic principles and personal values that characterize interprofessional team-based care. Developed by individual participants from the IOM’s Best Practices Innovation Collaborative, the authors identified key findings from health care literature, and used interviews with eleven teams located across the United States to clarify how these factors shape effective team-based care. The principles and values reviewed are intended to help guide clinicians, patients, administrators, and other stakeholders in health care seeking high-value team-based care that focuses on the goals and priorities of patients and their families. In its conclusion, the discussion paper outlines four themes to guide the growth of team-based health care delivery. 

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