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 by clicking here.
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
Harnessing Evidence and Experience to Change Culture: A Guiding Framework for Patient and Family Engaged Care
Past reports from the National Academy of Medicine (NAM) 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. Download the discussion paper >>
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. These are the unprecedented challenges — and extraordinary opportunities — the incoming presidential administration must weigh as it charts the next steps for health reform in the United States. Read the series >>
NAM’s Action Collaborative on Clinical Well-Being and Resilience
Every year in the United States, about 400 physicians take their own lives — a rate more than double that of the general population. Physicians experience high rates of depression, burnout, and poor work-life balance. This phenomenon cuts across all ages, stages, and career paths — from trainees to senior practitioners. And these challenges are not unique to physicians. Nurses and other clinicians experience similar effects on performance, health, and well-being.
The National Academy of Medicine will build a collaborative platform for supporting and improving clinician well-being and resilience across multiple organizations, including clinician and consumer groups as well as health care organizations and policy making bodies. This “action collaborative” will provide the venue for a set of collaborative activities, grounded in evidence-based knowledge, to (1) assess and understand the underlying causes of clinician burnout and suicide, and (2) advance solutions that reverse the trends in clinician stress, burnout, and suicide. Activities of the collaborative will include working meetings among participating groups, public workshops, and stakeholder engagement activities. Learn more about the initiative >>
The Learning Health Systems Series
To facilitate progress toward the development of a learning health system – in which science, informatics, incentives, and culture are aligned for continuous improvement and innovation, with best practices seamlessly embedded in the delivery process and new knowledge captured as an integral by-product of the delivery experience – the Roundtable on Value & Science-Driven Health Care has marshaled the insights of the nation’s leading experts to explore in detail the prospects, and the necessity, for transformational change in the fundamental elements of health and health care. The assessments are reported in the 11 volumes of the IOM Learning Health System Series. Download the series >>
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. Read the discussion paper >>
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. Read the discussion paper >>
Although health literacy is commonly defined as an individual trait, it does not depend on the skills of individuals alone. Health literacy is the product of the interaction between individuals’ capacities and the health literacy-related demands and complexities of the health care system. Specifically, the ability to understand, evaluate, and use numbers is important to making informed health care choices. Download the summary >>
Social Networking Sites and the Continuously Learning Health System: A Survey
In Social Networking Sites and the Continuously Learning Health System: A Survey, the authors report findings that 94 percent of U.S. adult social media users with health conditions strongly endorse sharing their health data anonymously to help improve health care. The discussion paper and a companion commentary were written by participants in the IOM’s Evidence Communication Innovation Collaborative. The survey also finds that respondents’ willingness to share data for society’s benefit outweighs lingering concerns that sharing health data still carries some degree of risk. For instance, 76 percent of American social media users with a medical condition believe that data from their personal health record potentially could be used without their knowledge. The authors conclude by arguing for balanced policies that allow for the sales of goods and services based on users’ data, but also protect users from potential harm. Read the discussion paper >>
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. Read the discussion paper >>
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. Read the discussion paper >>
Best Care at Lower Cost: The Path to Continuously Learning Health Care in America
America’s health care system has become too complex and costly to continue business as usual. Best Care at Lower Cost explains that inefficiencies, an overwhelming amount of data, and other economic and quality barriers hinder progress in improving health and threaten the nation’s economic stability and global competitiveness. According to this report, the knowledge and tools exist to put the health system on the right course to achieve continuous improvement and better quality care at a lower cost. Download the report >>
Demanding Value from Our Health Care: Motivating Patient Action to Reduce Waste in Health Care
Health care costs have doubled as a share of the economy over the past three decades (Martin et al., 2012), causing stress on family, employer, and government budgets. Furthermore, these expenses contain substantial waste and often do not improve patient health. One important way to improve this situation is by engaging patients and the public around value. There are numerous challenges to achieving this goal, including several unanswered questions about how best to routinely approach patients on the issue. Yet, some insights are developing. Read the discussion paper >>
Video Testimonials: The Benefits of Engagement
Video Testimonials: Benefits of Networking Patient & Family Advisory Councils (PFACs)