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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. Health Literacy and Numeracy is the summary of a workshop convened by The Institute of Medicine Roundtable on Health Literacy in July 2013 to discuss topics related to numeracy, including the effects of ill health on cognitive capacity, issues with communication of health information to the public, and communicating numeric information for decision making. This report includes a paper commissioned by the Roundtable,'Numeracy and the Affordable Care Act: Opportunities and Challenges,'that discusses research findings about people's numeracy skill levels; the kinds of numeracy skills that are needed to select a health plan, choose treatments, and understand medication instructions; and how providers should communicate with those with low numeracy skills. The paper was featured in the workshop and served as the basis of discussion.

This volume includes 14 papers from the National Academy of Engineering's Ninth Annual U.S. Frontiers of Engineering Symposium held in September 2003. The U.S. Frontiers meeting brings together 100 outstanding engineers (ages 30-45) to learn from their peers and discuss leading-edge technologies in a range of fields. The 2003 symposium covered these four areas: environmental engineering; fundamental limits of nanotechnology; counterterrorism technologies and infrastructure protection; and biomolecular computing. Papers in the book cover topics such as microbial mineral respiration; water-resource engineering, economics, and public policy; frontiers of silicon CMOS technology; molecular electronics; biological counterterrorism technologies; Internet security; DNA computing by self-assembly; and challenges in programming living cells, among others. A talk by Aerospace Corp. president and CEO William F. Ballhaus, Jr. titled The Most Important Lessons You Didn't Learn in Engineering School is also included in the volume. Appendixes include summaries of the breakout session discussion that focused on public understanding of engineering, information about the contributors, the symposium program, and a list of the meeting participants. The book is the ninth in a series covering the topics of the U.S. Frontiers of Engineering meetings.

Organizational Change to Improve Health Literacy is the summary of a workshop convened in April 2013 by the Institute of Medicine Board on Population Health and Public Health Practice Roundtable on Health Literacy. As a follow up to the 2012 discussion paper Ten Attributes of a Health Literate Health Care Organization, participants met to examine what is known about implementation of the attributes of a health literate health care organization and to create a network of health literacy implementers who can share information about health literacy innovations and problem solving. This report discusses implementation approaches and shares tools that could be used in implementing specific literacy strategies. Although health literacy is commonly defined as an individual trait, there is a growing appreciation that health literacy 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. System changes are needed to better align health care demands with the public's skills and abilities. Organizational Change to Improve Health Literacy focuses on changes that could be made to achieve this goal.

The National Roundtable on Health Care Quality was established in 1995 by the Institute of Medicine. The Roundtable consists of experts formally appointed through procedures of the National Research Council (NRC) who represent both public and private-sector perspectives and appropriate areas of substantive expertise (not organizations). From the public sector, heads of appropriate Federal agencies serve. It offers a unique, nonadversarial environment to explore ongoing rapid changes in the medical marketplace and the implications of these changes for the quality of health and health care in this nation. The Roundtable has a liaison panel focused on quality of care in managed care organizations. The Roundtable convenes nationally prominent representatives of the private and public sector (regional, state and federal), academia, patients, and the health media to analyze unfolding issues concerning quality, to hold workshops and commission papers on significant topics, and when appropriate, to produce periodic statements for the nation on quality of care matters. By providing a structured opportunity for regular communication and interaction, the Roundtable fosters candid discussion among individuals who represent various sides of a given issue.

2023 marked the 10-year anniversary of the National Academies Institute of Medicine consensus report,'Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis.'The National Cancer Policy Forum and the American Society of Clinical Oncology co-hosted a public workshop in October 2023 to provide an opportunity for the cancer community to gauge progress on the implementation of the report recommendations and to discuss persistent challenges in achieving excellent and equitable cancer care. Workshop speakers considered actions that could be taken to improve progress, as well as aspects of cancer care that have changed over the past decade and thus might require new strategies to advance the delivery of high-quality cancer care.

In February 2024, the National Academies Global Forum on Innovation in Health Professional Education co-hosted a public workshop with Penn Dental Medicine to explore value proposition for oral health promotion and disease prevention. Experts from around the globe representing multiple sectors, discussed the value of holistic oral health, particularly for those with disabilities, and the importance of interprofessional education and collaborative practices aimed at whole-person oral health care.

Racial and ethnic inequities in health and health care impact individual well-being, contribute to millions of premature deaths, and cost the United States hundreds of billions of dollars annually. Addressing these inequities is vital to improving the health of the nation's most disadvantaged communities—and will also help to achieve optimal health for all. In 2003, the Institute of Medicine examined these inequities in Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Because disparities persist, the National Academies convened an expert committee with support from the Agency for Healthcare Research and Quality and the National Institutes of Health. The committee's report reviews the major drivers of health care disparities, provides insight into successful and unsuccessful interventions, identifies gaps in the evidence base, and makes recommendations to advance health equity.

At the request of the Health Resources and Services Administration, the National Academies Forum on Mental Health and Substance Use Disorders hosted a public workshop in April 2024 to explore mental health care services related to anxiety and mood disorders in women. Speakers provided evidence to identify, define, and prepare strategies for the provision of essential health care services for women experiencing anxiety and mood disorders. Presentations also described health disparities, healthcare finances, and policies related to the quality and access of mental healthcare services available for women.

To explore the current and future state of serious illness care research, the National Academies Roundtable on Quality Care for People with Serious Illness hosted a public workshop in November 2023. Speakers identified research gaps and challenges and explored strategies and opportunities to further develop the evidence base to improve care for all those living with serious illness, their families, and care partners.

Transgender and gender diverse (TGD) people and people with variations in sex traits (VSTs) can experience serious health challenges and often have a greater burden of disability or greater morbidity from chronic disease compared with the general population.'Transgender and gender diverse'refers to people whose gender identity differs from what is typically associated with their sex recorded at birth.'Variations in sex traits'refers to genetic, anatomical, and hormonal variations that affect the genitourinary tract and reproduction systems; individuals with VSTs may have a sex and/or gender identity that differs from their sex recorded at birth. The U.S. Social Security Administration (SSA) asked the National Academies to convene a committee of experts to evaluate how contemporary conceptions of sex and gender in medicine and current clinical guidelines impact disability determinations. The resulting report offers conclusions in key areas including (1) the collection of data on sex and gender identity, (2) disability considerations for SSA'Listings of Impairments (medical criteria that apply to the evaluation of disability) with sex-specific diagnostic criteria, (3) inclusive language in disability Listings of Impairments, and (4) guidance for adjudicators on assessing disability for TGD applicants and applicants with VSTs.

Approximately 3.6 million live births occur every year in the United States. Between 8 and 9 percent of infants are born with low birth weight (LBW), defined by the medical community as less than 2,500 grams or 5.5 pounds at birth. While most infants born with LBW are not impacted by severe developmental disabilities or major or multiple health conditions, research indicates that these infants often do experience elevated rates of mild to moderate chronic health conditions that have meaningful functional impacts throughout an individuals life course. The Social Security Administration (SSA) asked the National Academies of Sciences, Engineering, and Medicine to convene an expert committee to provide an overview of the current status of the identification, treatment, and prognosis of LBW babies, including trends in survivability, in the U.S. population under age 1 year. SSA also asked the committee to provide information on the short- and long-term functional outcomes associated with and the most common conditions related to LBW, available treatments and services, and other considerations. The resulting report, Low Birth Weight Babies and Disability, presents the committees conclusions.

The United States is experiencing a decline in life expectancy despite high health care spending due to a multitude of factors, including the COVID-19 pandemic, opioid epidemic, high burden of chronic disease, and systemic and structural inequities. A response proportional to this crisis is required. Valuing America's Health: Aligning Financing to Reward Better Health and Well-Being explores opportunities to transform the current health and health care system to one that promotes whole person and whole population health. The publication emphasizes the need for a bold vision and sustainable financing strategies to prioritize health and well-being for all. Authors of the publication highlight the importance of building a movement to prioritize health, repairing systemic failures, holding stakeholders accountable, controlling health care costs, incentivizing health promotion, adopting collaborative financing and policy-making approaches, and empowering individuals and communities in health decision-making. The way is clear; what is needed now is the will to move forward. Learn more about how to ensure our nation's health and health care system can support optimal health for all.

There are significant challenges facing the workforce needed to provide high-quality care to increasing numbers of people living with serious illness. The National Academies Roundtable on Quality Care for People with Serious Illness hosted a hybrid public workshop in April 2023 to explore strategies and approaches to address major workforce challenges, such as health professional well-being; workforce shortages; workforce training and retention; as well as how to advance the diversity, equity, and inclusion of the workforce caring for people of all ages and all stages of serious illness. This workshop builds on the 2019 Roundtable workshop Building the Workforce We Need to Care for People with Serious Illness.

About 20 percent of all Americans live with a behavioral health condition, but only half of this population receives treatment - with direct consequences that include poor physical health outcomes, increased health care costs, and reduced quality of life and life span. Barriers to obtaining behavioral health treatment are most evident in populations receiving Medicare, Medicaid, and Marketplace plans. Behavioral health care providers serving individuals enrolled in these plans are more likely to experience challenges around reimbursement and training, which disincentivizes participation. The Centers for Medicare & Medicaid Services and the Substance Abuse and Mental Health Services Administration asked the National Academies to convene an expert committee to examine current challenges in ensuring broad access to evidence-based behavioral health care services through Medicare, Medicaid, and Marketplace programs and propose strategies to address those challenges.

With recent medical, technological, and socioeconomic developments, people are living longer. The rising average age of the world's population presents an opportunity to develop health policy that prioritizes functioning as a goal of healthy aging. In February 2024, the National Academies convened a hybrid workshop at the University of Lucerne in Switzerland to host a discussion focused on the World Health Organization's concept of functioning. Speakers paid particular focus to healthy aging and the future of rehabilitation as a health strategy. Experts emphasized that the need for rehabilitation is increasing due to rapid population aging accompanied by a rise in physical and mental health conditions, limitations, and injuries. The associated economic and practical obstacles of optimizing functioning across the life course were also discussed.

Traumatic brain injuries (TBI) affect millions of Americans each year, causing symptoms that can be debilitating and long-lasting and resulting in physical, cognitive, emotional, and financial ramifications. The complexity and heterogeneity of TBI make it challenging to target the right interventions to the right patient at the right time. For those who do receive care, unlinked health records, fragmented care delivery, and gaps in medical surveillance means many questions remain unanswered about TBI prevalence, comorbidities, adverse outcome risk factors, and long-term outcomes. To help address this challenge, learning health care systems that bidirectionally exchange data and insights across clinical research, care services, and public health have been identified as key to improving patient outcomes. To help move the field forward, the National Academies Forum on Traumatic Brain Injury hosted a public workshop to explore the role of learning health systems in advancing TBI research and care. This Proceedings of a Workshop summarizes discussions and key messages from the workshop.

A National Academies committee was tasked with identifying essential health care services for women related to intimate partner violence (IPV) during steady state conditions, determining whether the essential health care services related to IPV differ during public health emergencies (PHEs), and identifying strategies to sustain access to those essential health care services during PHEs. This report, Essential Health Care Services Addressing Intimate Partner Violence, presents findings from research and deliberations and lays out recommendations for leaders of health care systems, federal agencies, health care providers, emergency planners, and those involved in IPV research.

At any one time, at least 30,000 people in the U.S. are living with amyotrophic lateral sclerosis (ALS), a rapidly progressive, fatal neurological disease affecting individuals, caregivers, at-risk genetic carriers, and others. In 2022, Congress directed the National Institutes of Health to commission a National Academies committee of experts to recommend key actions public, private, and nonprofit sectors should take to make ALS a livable disease within the next 10 years. The resulting report, Living with ALS, focuses on an integrated ALS multidisciplinary care and research system to help facilitate earlier diagnosis and connections to specialty care.

The convergence of imaging, pathology, and laboratory testing data, augmented with information technology, is referred to as integrated diagnostics. To examine the current state of the science and strategies to facilitate precision cancer care through integrated diagnostics, the National Academies National Cancer Policy Forum hosted a public workshop in collaboration with the Computer Science and Telecommunications Board and the Board on Human-Systems Integration.

The National Academies National Cancer Policy Forum hosted a Summer 2022 workshop to explore the current state of knowledge regarding risk factors for cancer and best practices for cancer prevention and risk reduction interventions. Speakers reviewed the current evidence base, examined best practices and innovative approaches for clinic- and population-based cancer prevention, and discussed strategies to promote effective communication about cancer prevention. This Proceedings of a Workshop summarizes the discussions held during the workshop. This workshop is the second in a series examining policy issues in cancer prevention and cancer screening. The first workshop, which took place in 2020, focused on advancing the development and implementation of effective, high-quality cancer screening.

What can be more vital to each of us than our health? Yet, despite unprecedented health care spending, the U.S. health system is substantially underperforming, especially with respect to what should be possible, given current knowledge. Although the United States is currently devoting 18% of its Gross Domestic Product to delivering medical care—more than $3 trillion annually and nearly double the expenditure of other advanced industrialized countries—the U.S. health system ranked only 37 in performance in a World Health Organization assessment of member nations. In Vital Directions for Health & Health Care: An Initiative of the National Academy of Medicine, the National Academy of Medicine (NAM), which has long stood as the nation's most trusted independent source of guidance in health, health care, and biomedical science, has marshaled the wisdom of more than 150 of the nation's best researchers and health policy experts to assess opportunities for substantially improving the health and well-being of Americans, the quality of care delivered, and the contributions of science and technology. This publication identifies practical and affordable steps that can and must be taken across eight action and infrastructure priorities, ranging from paying for value and connecting care, to measuring what matters most and accelerating the capture of real-world evidence. Without obscuring the difficulty of the changes needed, in Vital Directions, the NAM offers an important blueprint and resource for health, policy, and leaders at all levels to achieve much better health outcomes at much lower cost.

As a result of a collaboration between the National Academy of Medicine (NAM) and the Office of the National Coordinator for Health Information Technology, this NAM Special Publication summarizes and builds on a meeting series in which a multi-stakeholder group of experts discussed the potential of clinical decision support (CDS) to transform care delivery by ameliorating the burden that expanding clinical knowledge and care and choice complexity place on the finite time and attention of clinicians, patients, and members of the care team. This summary also includes highlights from discussions to address the barriers to realizing the full benefits of CDS-facilitated value improvement. Optimizing Strategies for Clinical Decision Support identifies the need for a continuously learning health system driven by the seamless and rapid generation, processing, and practical application of the best available evidence for clinical decision making and lays out a series of actionable collaborative next steps to optimize strategies for adoption and use of CDS.

The National Academies Forum on Traumatic Brain Injury (TBI) hosted a hybrid public workshop in May 2023 to explore what is needed to better serve adult TBI patients who require follow-up care in support of their recovery at home. Speakers discussed when and how to follow up with less-severe TBI patients who have been discharged to their homes after a brief period of acute care, and the varied needs, issues, and considerations that relate to outpatient care and at-home symptom management during the approximately 6-month period following injury.This publication summarizes the presentation and discussion of the workshop.

To advance insights and perspectives on how to better manage the care of the high-need patient population, the National Academy of Medicine, with guidance from an expert planning committee, was tasked with convening three workshops held between July 2015 and October 2016. The resulting special publication, Effective Care for High-Need Patients: Opportunities for Improving Outcomes, Value, and Health, summarizes the presentations, discussions, and relevant literature.

Realizing the promise of digital technology will depend on the ability to share information across time and space from multiple devices, sources, systems, and organizations. The major barrier to progress is not technical; rather, it is in the failure of organizational demand and purchasing requirements. In contrast to many other industries, the purchasers of health care technologies have not marshaled their purchasing power to drive interoperability as a key requirement. Better procurement practices, supported by compatible interoperability platforms and architecture, will allow for better, safer patient care; reduced administrative workload for clinicians; protection from cybersecurity attacks; and significant financial savings across multiple markets. With funding support from the Gordon and Betty Moore Foundation, this National Academy of Medicine Special Publication represents a multi-stakeholder exploration of the path toward achieving large-scale interoperability through strategic acquisition of health information technology solutions and devices. In this publication, data exchanges over three environments are identified as critical to achieving interoperability: facility-to-facility (macro-tier); intra-facility (meso-tier); and at point-of-care (micro-tier). The publication further identifies the key characteristics of information exchange involved in health and health care, the nature of the requirements for functional interoperability in care processes, the mapping of those requirements into prevailing contracting practices, the specification of the steps necessary to achieve system-wide interoperability, and the proposal of a roadmap for using procurement specifications to engage those steps. The publication concludes with a series of checklists to be used by health care organizations and other stakeholders to accelerate progress in achieving system-wide interoperability.

The National Academies Roundtable on Quality Care for People with Serious Illness, National Cancer Policy Forum, and Forum on Aging, Disability and Independence hosted a workshop that examined opportunities to better support family caregiving for people with cancer or other serious illnesses. This workshop built upon previous work, including the 2016 consensus report Families Caring for an Aging America. This Proceedings of a Workshop summarizes the discussions held during the workshop, which focused on: strategies to better capture, understand, and act on family caregiver input and experience; research gaps and opportunities to guide caregiving for patients with serious illnesses; potential policy and practice opportunities to advance family-centered care for serious illness; and opportunities to embed a health equity focus across family caregiving research, policy, and practice.

Whole health is physical, behavioral, spiritual, and socioeconomic well-being as defined by individuals, families, and communities. Whole health care is an interprofessional, team-based approach anchored in trusted relationships to promote well-being, prevent disease, and restore health. It aligns with a person's life mission, aspiration, and purpose. It shifts the focus from a reactive disease-oriented medical care system to one that prioritizes disease prevention, health, and well-being. It changes the health care conversation from'What's wrong with you?'to'What matters to you?'The Department of Veterans Affairs (VA), the Samueli Foundation, and the Whole Health Institute commissioned the National Academies of Sciences, Engineering, and Medicine to establish a committee to provide guidance on how to fill gaps and create processes to accelerate the transformation to whole health care for veterans, both inside and outside the VA system, and the rest of the U.S. population. The resulting report presents findings and recommendations that provide a roadmap for improving health and well-being for veterans and the nation.

'Long COVID'refers to the wide range of long-lasting symptoms experienced by some patients after a SARS-CoV-2 infection. The most common symptoms include fatigue, headache, brain fog, shortness of breath, hair loss, and pain. At this time, there are many knowledge gaps related to Long COVID, including the prevalence of the condition, the impact of the symptoms on survivors'ability to function, and the long-term course of the condition. While many individuals with Long COVID recover within one year, others experience little or no decrease in symptom severity over time. Long COVID symptoms can affect a person's ability to work and otherwise function in daily life, so people with the condition may need to utilize programs such as Social Security Disability Insurance (SSDI) and the Supplemental Security Income Program (SSI). The Social Security Administration (SSA), which administers both of these programs, requested that the National Academies of Sciences, Engineering, and Medicine host a public workshop to discuss research into the long-term health effects of COVID-19, their impacts on individuals and populations, and how the SSDI and SSI programs can support individuals who suffer disability as a result of Long COVID. This publication summarizes the presentation and discussion of the workshop.

The U.S. Social Security Administration (SSA) administers the Social Security Disability Insurance program and the Supplemental Security Income program. As part of their process, immune system disorders are evaluated under Listing of Impairments 14.00 for adults and 114.00 for children. At the request of the SSA, the National Academies of Sciences, Engineering, and Medicine assembled a committee to review selected conditions related to the immune system. In particular, the SSA was interested in the current status of the diagnosis, treatment, and prognosis of immune system disorders including systemic lupus erythematosus (SLE), scleroderma, polymyositis, Sjögren's syndrome/disease, and inflammatory arthritis. This report provides an overview of the current status of the diagnosis, treatment, and prognosis of these immune system disorders in the U.S. population and the relative levels of functional limitation typically associated with them, common treatments, and other considerations.

The U.S. Social Security Administration (SSA) provides benefits to adults and children who meet the eligibility requirements for a disability as described in Title II and Title XVI of the Social Security Act. To determine whether more accurate or precise techniques exist for determining if a previously evaluated physical impairment is either more or less severe, SSA requested the National Academies assemble a committee to review new or improved diagnostic or evaluative techniques that have become generally available within the past 30 years for cardiovascular, neurological, respiratory, hematological, and digestive conditions. The resulting report presents a summary of the evidence and information around a selected subset of diagnostic and evaluative techniques.

Electronic Health Records (EHRs) are used across a wide variety of activities in cancer care and cancer research, including communication among health care team members and patients, clinical documentation and treatment planning, patient safety and quality improvement, scheduling and billing, as well as clinical research and disease surveillance activities. On February 28 and March 1, 2022, the National Cancer Policy Forum and the Computer Science and Telecommunications Board of the National Academies of Sciences, Engineering, and Medicine hosted a public workshop to examine opportunities to improve patient care and outcomes through collaborations to enhance innovation in the development, implementation, and use of EHRs in oncology care, research, and surveillance. This Proceedings of a Workshop summarizes the presentations and discussions that took place at the workshop.

Studies show that people commonly have psychotic symptoms for over a year before receiving treatment. Reducing this duration is critical, because early treatment is strongly associated with better outcomes. The National Academies Forum on Mental Health and Substance Use Disorders hosted a workshop in July 2022 to examine the current evidence on short- and long-term outcomes for people at high risk for psychosis. Speakers explored potential policy solutions and strategies that are most effective for coordinated, early-intervention specialty services. This Proceedings document summarizes workshop discussions.

The National Academies Roundtable on Genomics and Precision Health, in collaboration with the National Cancer Policy Forum, hosted a public workshop that examined how genomic data are used in health care, outside of the traditional settings for clinical genetics. The workshop identified opportunities for advancement of precision health care delivery. The event also explored how patients, clinicians, and payers assess and act upon the risks and benefits of genomic screening and diagnostic testing. Discussions focused on strategies to ensure that genomic applications are responsibly and equitably adopted to benefit populations as well as individuals over time. This Proceedings of a Workshop summarizes content from the event.

Patient-centered outcomes research (PCOR) studies consider the questions and outcomes that are meaningful to patients to compare the effectiveness of different prevention, diagnostic, and treatment options. PCOR also increases patient involvement in their care by providing them an opportunity to evaluate the quality, outcomes, and effectiveness of health care treatments and intervention, especially in areas where there is poor existing clinical evidence. The National Academies of Sciences, Engineering, and Medicine Board on Healthcare Services hosted a series of public workshops to explore ways of accelerating the use of PCOR findings in clinical practice to improve health and health care. Workshop discussions touched on the role of community health workers in helping care providers see and understand the whole picture of patient lives, the need for community engagement to ensure research is conducted and applied to practice equitably, and ways of measuring the impact of efforts to disseminate and implement new practices based on PCOR. This report summarizes the discussions that took place at these workshops.

Approximately five percent of Medicare beneficiaries (2.2 million Americans) are living with serious illness, as are many other non-Medicare eligible individuals. This number is expected to grow rapidly as the population ages and the prevalence of progressive illness increases. In many communities, particularly urban and rural underserved communities, primary care clinicians are the main workforce caring for people with serious illness, which underscores the need to integrate high quality serious illness care into primary care delivery. To better understand the challenges and opportunities for integrating serious illness care into primary care settings, the National Academies of Sciences, Engineering, and Medicine's Roundtable on Quality Care for People with Serious Illness hosted a virtual workshop on June 10 and 17, 2021. The workshop, titled Integrating Serious Illness Care into Primary Care Delivery, explored the shared principles of primary and serious illness care, the interdisciplinary teams that power both disciplines, the policy issues that can act as barriers to or incentives for integration, and best practices for integrating primary care and serious illness care. This Proceedings of a Workshop summarizes the presentations and discussions that occurred during the workshop.

The Office of the Assistant Secretary for Planning and Evaluation (ASPE), in partnership with other agencies and divisions of the United States Department of Health and Human Services, coordinates a portfolio of projects that build data capacity for conducting patient-centered outcomes research (PCOR). PCOR focuses on producing scientific evidence on the effectiveness of prevention and treatment options to inform the health care decisions of patients, families, and health care providers, taking into consideration the preferences, values, and questions patients face when making health care choices. ASPE asked the National Academies to appoint a consensus study committee to identify issues critical to the continued development of the data infrastructure for PCOR. The committee's work will contribute to ASPE's development of a strategic plan that will guide their work related to PCOR data capacity over the next decade. As part of its information gathering activities, the committee organized three workshops to collect input from stakeholders on the PCOR data infrastructure. This report, the third in a series of three interim reports, summarizes the discussion and committee conclusions from the third workshop, which focused on ways of enhancing collaborations, data linkages, and the interoperability of electronic databases to make the PCOR data infrastructure more useful in the years ahead. Participants in the workshop included researchers and policy experts working in these areas.

Patients diagnosed with Alzheimer's disease and related dementias (ADRD) rely on family members, their community, and the health care system for progressively increasing support over the course of their disease. These people receive care through a frequently siloed health care system across hospitals, nursing homes, ambulatory care settings, and long-term care settings, as well as community- and home-based care. As the number of people living with a diagnosis of ADRD continues to grow, so does the need to provide better support for these people and their caregivers. The National Institute on Aging (NIA) Division of Behavioral and Social Research suggests that organizational behavior change will be needed for health care systems to integrate all of the services and supports required to provide high-quality care for people with ADRD. NIA sponsored a workshop hosted by the National Academies of Sciences, Engineering, and Medicine to explore mechanisms to improve the quality of care for people living with ADRD and the potential of innovative payment models to incentivize health care systems to make the necessary systemic changes. The workshop convened a diverse array of experts in fields including nursing, geriatrics, health care economics, health care services research, quality measurement, social work, medical ethics, law, health care finance, and health care policy. This publication summarizes the presentation and discussion of the workshop.

The staggering number of deaths and emergency department visits caused by firearm injuries has only grown with time. Costs associated with firearm related injuries amount to over a billion dollars annually in the United States alone, not including physician charges and postdischarge costs. To address this epidemic, in April of 2022, the National Academies of Sciences, Engineering, and Medicine's Board on Population Health and Public Health Practice, in collaboration with Northwell Heath and the PEACE Initiative, brought together firearm injury prevention thought leaders to explore how health systems can integrate interventions for firearm injury prevention into routine care for the purpose of improving the health of patients and communities. The workshop speakers discussed strategies for firearm injury and mortality prevention and its integration into routine care. Speakers also explored facilitators and barriers to implementation strategies, and how health systems might work to overcome those barriers.

Approximately 7.4 million people in the United States live with an intellectual or developmental disability (IDD), defined by the Centers for Disease Control and Prevention as'a group of conditions due to an impairment in physical, learning, language, or behavior areas. These conditions begin during the developmental period, may impact day-to-day functioning, and usually last throughout a person's lifetime.'Individuals with IDD and their caretakers face exceptional barriers to staying healthy and accessing appropriate health services. Among these barriers are difficulty finding care providers that are adequately trained in meeting their specialized needs, unwieldy payment structures, and a lack of coordination between the various systems of care with which patients with IDD may interact (e.g., education, social work, various segments of the health care system). The National Academies of Sciences, Engineering, and Medicine hosted a workshop to discuss promising innovations in (1) workforce development, (2) financing and payment, and (3) care coordination; and to share visions for improved systems of care. Participants noted that while many existing approaches could serve as models for improving care, large changes will need to be made in these 3 facets of the care system in order to make them accessible to all IDD patients. This publication summarizes the presentations and discussions of the workshop.

To examine the potential role of companion animals as sentinels of relevant, shared environmental exposures that may affect human aging and cancer, the National Cancer Policy Forum held a workshop in collaboration with the Forum on Aging, Disability, and Independence and the Standing Committee on the Use of Emerging Science for Environmental Health Decisions to explore this promising and underutilized pathway for research. Presentations and panel discussions covered the current state of the science and pathways for accelerating research, along with opportunities and challenges for using this novel translational approach to exposure science to advance human health. This Proceedings of a Workshop outlines the presentations and discussions that occurred during the workshop.

The Roundtable on Population Health Improvement of the National Academies of Sciences, Engineering, and Medicine hosted a public workshop on September 19, 2019 titled Models for Population Health Improvement by Health Care Systems and Partners: Tensions and Promise on the Path Upstream. The term upstream refers to the higher levels of action to improve health. Medical services act downstream (i.e., at the patient level) in improving population health, while such activities as screening and referring to social and human services (e.g., for housing, food assistance) are situated midstream, and the work of changing laws, policies, and regulations (e.g., toward affordable housing, expanding healthy food access) to improve the community conditions for health represents upstream action. The workshop explored the growing attention on population health, from health care delivery and health insurance organizations to the social determinants of health and their individual-level manifestation as health-related social needs, such as patients'needs. The workshop showcased collaborative population health improvement efforts, each of which included one or more health systems. This publication summarizes the presentations and discussions from the workshop.

The COVID-19 pandemic has highlighted existing weaknesses in the United States health care system, while creating a new set of challenges related to caring for people with serious illness. The National Academy of Sciences, Engineering, and Medicine's Roundtable on Quality Care for People with Serious Illness hosted a three-part workshop to explore the initial responses to the pandemic by health care teams providing care to people with serious illness, the impact of the pandemic on the health care workforce, the use of telehealth, issues related to clearly communicating with the public about health emergencies, and policy opportunities to improve care for people with serious illness. Issues related to health equity were discussed throughout the three webinars.

The Office of the Assistant Secretary for Planning and Evaluation (ASPE), in partnership with other agencies and divisions of the United States Department of Health and Human Services, coordinates a portfolio of projects that build data capacity for conducting patient-centered outcomes research (PCOR). PCOR focuses on producing scientific evidence on the effectiveness of prevention and treatment options to inform the health care decisions of patients, families, and health care providers, taking into consideration the preferences, values, and questions patients face when making health care choices. ASPE asked the National Academies to appoint a consensus study committee to identify issues critical to the continued development of the data infrastructure for PCOR. Building Data Capacity for Patient-Centered Outcomes Research contains findings and conclusions in the areas that could benefit from being prioritized as part of ASPE's work, and offers input on strengthening the overall framework for building the data infrastructure over the coming years. The committee authoring this report also issued three interim reports, which summarized discussions from three workshops, and are included as appendices in the final report.

Nursing homes play a unique dual role in the long-term care continuum, serving as a place where people receive needed health care and a place they call home. Ineffective responses to the complex challenges of nursing home care have resulted in a system that often fails to ensure the well-being and safety of nursing home residents. The devastating impact of the COVID-19 pandemic on nursing home residents and staff has renewed attention to the long-standing weaknesses that impede the provision of high-quality nursing home care. With support from a coalition of sponsors, the National Academies of Sciences, Engineering, and Medicine formed the Committee on the Quality of Care in Nursing Homes to examine how the United States delivers, finances, regulates, and measures the quality of nursing home care. The National Imperative to Improve Nursing Home Quality: Honoring Our Commitment to Residents, Families, and Staff identifies seven broad goals and supporting recommendations which provide the overarching framework for a comprehensive approach to improving the quality of care in nursing homes.

The Office of the Assistant Secretary for Planning and Evaluation (ASPE), in partnership with other agencies and divisions of the United States Department of Health and Human Services, coordinates a portfolio of projects that build data capacity for conducting patient-centered outcomes research (PCOR). PCOR focuses on producing scientific evidence on the effectiveness of prevention and treatment options to inform the health care decisions of patients, families, and health care providers, taking into consideration the preferences, values, and questions patients face when making health care choices. ASPE asked the National Academies to appoint a consensus study committee to identify issues critical to the continued development of the data infrastructure for PCOR. The committee's work will contribute to ASPE's development of a strategic plan that will guide their work related to PCOR data capacity over the next decade. As part of its information gathering activities, the committee organized three workshops to collect input from stakeholders on the PCOR data infrastructure. This report, the second in a series of three interim reports, summarizes the discussion and committee conclusions from the second workshop, focused on data standards, methods, and policies that could make the PCOR data infrastructure more useful in the years ahead. Participants in the workshop included researchers and policy experts working in these areas.

Sharing health data and information across stakeholder groups is the bedrock of a learning health system. As data and information are increasingly combined across various sources, their generative value to transform health, health care, and health equity increases significantly. Health data have proven their centrality in guiding action to change the course of individual and population health, if properly stewarded and used. In the context of the COVID-19 pandemic, both data and a lack of data illuminated profound shortcomings that affected health care and health equity. Yet, a silver lining of the pandemic was a surge in collaboration among data holders in public health, health care, and technology firms, suggesting that an evolution in health data sharing is visible and tangible. This Special Publication features some of these novel data-sharing collaborations, and has been developed to provide practical context and implementation guidance that is critical to advancing the lessons learned identified in its parent NAM Special Publication, Health Data Sharing: Building a Foundation of Stakeholder Trust. The focus of this publication is to identify and describe exemplar groups to dispel the myth that sharing health data more broadly is impossible and illuminate the innovative approaches that are being taken to make progress in the current environment. It also serves as a resource for those waiting in the wings, showing how barriers were addressed and harvesting lessons and insights from those on the front lines. In the meantime, knowledge is already available to foster better health care and health outcomes. The examples described in this volume suggest how intentional attention to health data sharing can enable unparalleled advances, securing a healthier and more equitable future for all.

The Roundtable on Population Health Improvement, a convening activity of the National Academies of Sciences, Engineering, and Medicine, held a workshop on March 15-16, 2021, to explore issues related to increasing health care spending in the United States. The workshop, U.S. Health Care Expenditures: Costs, Lessons, and Opportunities, was organized to highlight the persisting challenge of health care expenditures that are not commensurate with the health outcomes they produce. This publication summarizes the presentation and discussion of the workshop.

Every community is affected by traumatic brain injury (TBI). Causes as diverse as falls, sports injuries, vehicle collisions, domestic violence, and military incidents can result in injuries across a spectrum of severity and age groups. Just as the many causes of TBI and the people who experience it are diverse, so too are the physiological, cognitive, and behavioral changes that can occur following injury. The overall TBI ecosystem is not limited to healthcare and research, but includes the related systems that administer and finance healthcare, accredit care facilities, and provide regulatory approval and oversight of products and therapies. TBI also intersects with the wide range of community organizations and institutions in which people return to learning, work, and play, including the education system, work environments, professional and amateur sports associations, the criminal justice system, and others. Traumatic Brain Injury: A Roadmap for Accelerating Progress examines the current landscape of basic, translational, and clinical TBI research and identifies gaps and opportunities to accelerate research progress and improve care with a focus on the biological, psychological, sociological, and ecological impacts. This report calls not merely for improvement, but for a transformation of attitudes, understanding, investments, and care systems for TBI.

Cancer is the second leading cause of death among adults in the United States after heart disease. However, improvements in cancer treatment and earlier detection are leading to growing numbers of cancer survivors. As the number of cancer survivors grows, there is increased interest in how cancer and its treatments may affect a person's ability to work, whether the person has maintained employment throughout the treatment or is returning to work at a previous, current, or new place of employment. Cancer-related impairments and resulting functional limitations may or may not lead to disability as defined by the U.S. Social Security Administration (SSA), however, adults surviving cancer who are unable to work because of cancer-related impairments and functional limitations may apply for disability benefits from SSA. At the request of SSA, Diagnosing and Treating Adult Cancers and Associated Impairments provides background information on breast cancer, lung cancer, and selected other cancers to assist SSA in its review of the listing of impairments for disability assessments. This report addresses several specific topics, including determining the latest standards of care as well as new technologies for understanding disease processes, treatment modalities, and the effect of cancer on a person's health and functioning, in order to inform SSA's evaluation of disability claims for adults with cancer.

High-quality primary care is the foundation of the health care system. It provides continuous, person-centered, relationship-based care that considers the needs and preferences of individuals, families, and communities. Without access to high-quality primary care, minor health problems can spiral into chronic disease, chronic disease management becomes difficult and uncoordinated, visits to emergency departments increase, preventive care lags, and health care spending soars to unsustainable levels. Unequal access to primary care remains a concern, and the COVID-19 pandemic amplified pervasive economic, mental health, and social health disparities that ubiquitous, high-quality primary care might have reduced. Primary care is the only health care component where an increased supply is associated with better population health and more equitable outcomes. For this reason, primary care is a common good, which makes the strength and quality of the country's primary care services a public concern. Implementing High-Quality Primary Care: Rebuilding the Foundation of Health Care puts forth an evidence-based plan with actionable objectives and recommendations for implementing high-quality primary care in the United States. The implementation plan of this report balances national needs for scalable solutions while allowing for adaptations to meet local needs.