The use of immune modulator therapeutics, a type of immunotherapy enhancing the body immune system response to cancer, was perceived as the beginning of a new era in cancer care. While still important and frequently used, some of these therapeutics produce uneven response rates, disease resistance, and serious side effects. The National Academies National Cancer Policy Forum, in collaboration with the Forum on Drug Discovery, Development, and Translation, hosted a public workshop to discuss challenges related to immunotherapy treatment resistance, as well as potential policy opportunities to improve the development of immunotherapies for cancer treatment.
Topics: Health and Medicine » Cancer | Health and Medicine » Medical Technologies and Treatments | Health and Medicine » Health Sciences | Health and Medicine » Healthcare and Quality
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.
Topics: Health and Medicine » Children's Health | Health and Medicine » Healthcare and Quality | Health and Medicine » Policy, Reviews and Evaluations
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.
Topics: Health and Medicine » Healthcare and Quality | Health and Medicine » Policy, Reviews and Evaluations
The National Academies Forum on Microbial Threats and Forum on Neuroscience and Nervous System Disorders hosted a hybrid public workshop in June 2023 to explore opportunities to advance research and treatment of infection-associated chronic illnesses. The illnesses discussed in this workshop, including COVID-19, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), persistent or posttreatment Lyme disease syndrome (PTLDS), and multiple sclerosis (MS), share overlapping mechanisms and symptoms and have been inadequately researched. Recognizing these commonalities, speakers identified the need to advance research more comprehensively, translating to improved diagnostic and treatment options for patients across multiple conditions.
Topics: Health and Medicine » Health Sciences | Health and Medicine » Infectious Disease | Health and Medicine » Policy, Reviews and Evaluations
Between 2020-2023, many health systems and organizations created formal positions to improve diversity, equity, and inclusion (DEI) and health equity in response to social and health injustices and public demands for diversity and equity among executive level leadership. The National Academies Roundtable on the Promotion of Health Equity hosted an October 2023 public hybrid workshop to explore the successes and challenges of DEI and health equity C-suites, dimensions of DEI and health equity commitments, strategies for achieving internal and external goals, and potential metrics for measuring success.
Topics: Health and Medicine » Health Equity | Health and Medicine » Healthcare and Quality | Health and Medicine » Policy, Reviews and Evaluations
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.
Topics: Health and Medicine » Healthcare and Quality | Health and Medicine » Policy, Reviews and Evaluations
The proper disposal of unused or expired prescription drugs, particularly controlled substances such as opioids, may help to prevent serious risk of nonmedical use or overdose. In June 2023, the National Academies Forum on Drug Discovery, Development, and Translation hosted a hybrid public workshop to examine the scientific merit and practical implementation of drug disposal options to remove opioid analgesics from the home. Workshop participants considered potential strategies for encouraging and assessing the development and efficacy of in-home drug disposal systems that support the public health goal of mitigating the risk of nonmedical use or overdose associated with opioids.
Topics: Health and Medicine » Policy, Reviews and Evaluations
Advances in biomedical science, data science, engineering, and technology are leading to high-pace innovation with potential to transform health and medicine. These innovations simultaneously raise important ethical and social issues, including how to fairly distribute their benefits and risks. The National Academies of Sciences, Engineering, and Medicine, in collaboration with the National Academy of Medicine, established the Committee on Creating a Framework for Emerging Science, Technology, and Innovation in Health and Medicine to provide leadership and engage broad communities in developing a framework for aligning the development and use of transformative technologies with ethical and equitable principles. The committees resulting report describes a governance framework for decisions throughout the innovation life cycle to advance equitable innovation and support an ecosystem that is more responsive to the needs of a broader range of individuals and is better able to recognize and address inequities as they arise.
Topics: Health and Medicine » Health Equity | Health and Medicine » Health Sciences | Health and Medicine » Policy, Reviews and Evaluations
Social media has been fully integrated into the lives of most adolescents in the U.S., raising concerns among parents, physicians, public health officials, and others about its effect on mental and physical health. Over the past year, an ad hoc committee of the National Academies of Sciences, Engineering, and Medicine examined the research and produced this detailed report exploring that effect and laying out recommendations for policymakers, regulators, industry, and others in an effort to maximize the good and minimize the bad. Focus areas include platform design, transparency and accountability, digital media literacy among young people and adults, online harassment, and supporting researchers.
Topics: Health and Medicine » Children's Health | Health and Medicine » Public Health and Prevention | Health and Medicine » Policy, Reviews and Evaluations
Pediatric subspecialists are critical to ensuring quality care and pursuing research to improve prevention, diagnosis, and treatment for children. However, there are substantial disincentives to pursuing a career as a pediatric subspecialist, which are often heightened for individuals from groups underrepresented in medicine, and more effective collaboration with primary care clinicians is needed. Changing health care needs, increasing care complexity, and access barriers to pediatric subspecialty care have raised concerns about the current and future availability of pediatric subspecialty care and research.
In response, the National Academies, with support from a coalition of sponsors, formed the Committee on the Pediatric Subspecialty Workforce and Its Impact on Child Health and Well-Being to recommend strategies and actions to ensure an adequate pediatric subspecialty physician workforce to support broad access to high quality subspecialty care and a robust research portfolio to advance the health and health care of infants, children, and adolescents. This report outlines recommendations that, if fully implemented, can improve the quality of pediatric medical subspecialty care through a well-supported, superbly trained, and appropriately used primary care, subspecialty, and physician-scientist workforce.
Topics: Behavioral and Social Sciences » Children, Youth and Families | Health and Medicine » Children's Health | Health and Medicine » Policy, Reviews and Evaluations
While there is a limited data on safety-sensitive professionals, substance use disorders potentially affect pilots and flight attendants at the same rate as the general population - around 15 percent - but due to the high-risk nature of their jobs, aircraft operators are held to a higher standard for substance misuse on the job.
To protect the safety of the public and the aviation workforce, the Human Intervention Motivation Study (HIMS) and the Flight Attendant Drug and Alcohol Program (FADAP) were launched to help treat critical aviation workers - pilots and flight attendants, respectively - who misuse substances. In response to a congressional mandate, this new report reviews available evidence on the effectiveness of HIMS and FADAP and offers recommendations for improving these programs.
Topics: Health and Medicine » Mental Health and Behavior | Transportation and Infrastructure » Aviation
Complementary feeding refers to the introduction of foods other than human milk or formula to an infants diet. In response to a request from the Centers for Disease Control and Prevention, the National Academies Health and Medicine Division convened the Committee on Complementary Feeding Interventions for Infants and Young Children under Age 2 to conduct a consensus study scoping review of peer-reviewed literature and other publicly available information on interventions addressing complementary feeding of infants and young children. The interventions studied took place in the U.S. and other high-income country health care systems; early care and education settings; university cooperative extension programs; the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC); home visiting programs; and other settings. This consensus study report summarizes evidence and provides information on interventions that could be scaled up or implemented at a community or state level.
Topics: Food and Nutrition » Policy, Reviews and Evaluations | Health and Medicine » Children's Health
Racially and ethnically minoritized populations and tribal communities often face preventable inequities in health outcomes due to structural disadvantages and diminished opportunities around health care, employment, education, and more. Federal Policy to Advance Racial, Ethnic, and Tribal Health Equity analyzes how past and current federal policies may create, maintain, and/or amplify racial, ethnic, and tribal health inequities. This report identifies key features of policies that have served to reduce inequities and makes recommendations to help achieve racial, ethnic, and tribal health equity.
Topics: Health and Medicine » Health Equity | Health and Medicine » Public Health and Prevention | Health and Medicine » Policy, Reviews and Evaluations
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.
Topics: Health and Medicine » Healthcare and Quality | Health and Medicine » Policy, Reviews and Evaluations
In 2016, the National Academy of Medicine (NAM) hosted a series of meetings, which was sponsored by the Patient-Centered Outcomes Research Institute, with support from NAM's Executive Leadership Network. The series underscored the importance of partnerships between researchers and health system leadership and considered opportunities to build institutional capacity, cross-institutional synergy, and system-wide learning. During these meetings, health system executives, researchers, and others discussed building infrastructure that simultaneously facilitates care delivery, care improvement and evidence development. The vision is a digital system-wide progress toward continuous and seamless learning and improvement throughout health and health care. This publication aims to answer the following questions:
Topics: Health and Medicine » Health Sciences | Health and Medicine » Policy, Reviews and Evaluations
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.
Topics: Health and Medicine » Healthcare and Quality | Health and Medicine » Policy, Reviews and Evaluations
Social factors, signals, and biases shape the health of our nation. Racism and poverty manifest in unequal social, environmental, and economic conditions, resulting in deep-rooted health disparities that carry over from generation to generation. In Perspectives on Health Equity and Social Determinants of Health, authors call for collective action across sectors to reverse the debilitating and often lethal consequences of health inequity. This edited volume of discussion papers provides recommendations to advance the agenda to promote health equity for all. Organized by research approaches and policy implications, systems that perpetuate or ameliorate health disparities, and specific examples of ways in which health disparities manifest in communities of color, this Special Publication provides a stark look at how health and well-being are nurtured, protected, and preserved where people live, learn, work, and play. All of our nation’s institutions have important roles to play even if they do not think of their purpose as fundamentally linked to health and well-being. The rich discussions found throughout Perspectives on Health Equity and Social Determinants of Health make way for the translation of policies and actions to improve health and health equity for all citizens of our society. The major health problems of our time cannot be solved by health care alone. They cannot be solved by public health alone. Collective action is needed, and it is needed now.
Topics: Health and Medicine » Health Equity | Health and Medicine » Policy, Reviews and Evaluations
There is no question that opioid use disorder has become the fastest growing, serious, and far-reaching public health crisis facing our nation today. The growing and unprecedented opioid epidemic is a critical issue for public health and medical care throughout the country. Provisional estimates suggest that nearly 65,000 Americans died from a drug overdose in 2016, a 21% increase from the previous year and at a level higher than occurred during the peak years for deaths from HIV infection and automobile fatalities.
Nearly half of opioid overdose deaths are related to medications obtained legally by prescription, sparking deep concern among leaders in the health care sector. The need is clear for clinicians, as the "gatekeepers" of opioid prescriptions, and as the front line in facilitating access to treatment for addiction, to work together with state and community leaders to reduce the impact of opioid misuse on American communities.
At the request of the National Governors Association, the National Academy of Medicine convened a group of experts and field leaders to explore clinicians' roles in addressing opioid misuse and addiction. The resulting Special Publication is informed by, and builds on, initiatives and guidelines that have been stewarded by various stakeholder organizations providing leadership in addressing these issues. In the midst of evolving understanding of and experience in pain management and substance abuse, the authors offer to clinicians a set of axioms applicable both to responsible, appropriate opioid prescribing practices, and to recognition and treatment of substance use disorder. Also underscored are actions that clinicians can take to improve their skills and effectiveness in the face of the growing need, including leadership engagement to ensure that communities have the resources and tools that clinicians require to fulfill their responsibilities.
Topics: Health and Medicine » Healthcare and Quality | Health and Medicine » Policy, Reviews and Evaluations
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.
Topics: Health and Medicine » Healthcare and Quality | Health and Medicine » Policy, Reviews and Evaluations
Health services research is "the multidisciplinary field of scientific investigation that studies how social factors, financing systems, organizational structures and processes, health technologies, and personal behaviors affect access to health care and the quality and cost of health care." Since the 1960s, health services research has provided the foundation for progress, effectiveness, and value in health care. Ironically, at a time in which appreciation has never been higher for both the need and potential from health services research, the political and financial support for sustenance and growth appear to be weakening.
With funding support from AcademyHealth, the American Association of Colleges of Nursing, the American Board of Family Medicine, the American Society of Anesthesiologists, the Association of American Medical Colleges, the Federation of American Hospitals, and the Robert Wood Johnson Foundation, this National Academy of Medicine Special Publication identifies the range of issues that health services research must consider, address, and potentially overcome to transform the field to meet the needs of a 21st-century health care system. These issues are broad, multidisciplinary, and will require a coordinated effort to address—as well as dedicated and sustainable funding. Federal support for health services research has never been more critical. Now is a critical time for the field to articulate its priorities, demonstrate its utility, and transform to meet the needs of a 21st-century health care system. The physical and financial health of the nation is at stake.
Topics: Health and Medicine » Health Sciences | Health and Medicine » Healthcare and Quality | Health and Medicine » Policy, Reviews and Evaluations
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.
Topics: Health and Medicine » Healthcare and Quality | Health and Medicine » Policy, Reviews and Evaluations
Evidence-based medicine arose from a clear need and represents a major advance in the science of clinical decision making. Despite broad acceptance of evidence-based medicine, however, a fundamental issue remains unresolved: evidence is derived from groups of people, yet medical decisions are made by and for individuals. Despite persistent assertions from clinicians that determining the best therapy for each patient is a more complicated endeavor than just picking the best treatment on average, traditional approaches have been overly reliant on the average effects estimated from the outcomes of clinical trials.
This Special Publication is based on a workshop, held by the National Academy of Medicine, that considered patient and stakeholder perspectives on the importance of understanding heterogeneous treatment effects (HTE) and best practices for implementing clinical programs that take HTE into account. For evidence to be more applicable to individual patients, we need to combine methods for strong causal inference (first and foremost, randomization) with methods for prediction that permit inferences about which particular patients are likely to benefit and which are not. Better population-based outcomes will only be realized when we understand more completely how to treat patients as the unique individuals they are.
Topics: Health and Medicine » Healthcare and Quality | Health and Medicine » Policy, Reviews and Evaluations
The emergence of artificial intelligence (AI) in health care offers unprecedented opportunities to improve patient and clinical team outcomes, reduce costs, and impact population health. While there have been a number of promising examples of AI applications in health care, it is imperative to proceed with caution or risk the potential of user disillusionment, another AI winter, or further exacerbation of existing health- and technology-driven disparities.
This Special Publication synthesizes current knowledge to offer a reference document for relevant health care stakeholders. It outlines the current and near-term AI solutions; highlights the challenges, limitations, and best practices for AI development, adoption, and maintenance; offers an overview of the legal and regulatory landscape for AI tools designed for health care application; prioritizes the need for equity, inclusion, and a human rights lens for this work; and outlines key considerations for moving forward.
AI is poised to make transformative and disruptive advances in health care, but it is prudent to balance the need for thoughtful, inclusive health care AI that plans for and actively manages and reduces potential unintended consequences, while not yielding to marketing hype and profit motives.
Topics: Health and Medicine » Medical Technologies and Treatments | Computers and Information Technology » Information Technology
The effective use of data is foundational to the concept of a learning health system—one that leverages and shares data to learn from every patient experience, and feeds the results back to clinicians, patients and families, and health care executives to transform health, health care, and health equity. More than ever, the American health care system is in a position to harness new technologies and new data sources to improve individual and population health.
Learning health systems are driven by multiple stakeholders—patients, clinicians and clinical teams, health care organizations, academic institutions, government, industry, and payers. Each stakeholder group has its own sources of data, its own priorities, and its own goals and needs with respect to sharing that data. However, in America’s current health system, these stakeholders operate in silos without a clear understanding of the motivations and priorities of other groups. The three stakeholder working groups that served as the authors of this Special Publication identified many cultural, ethical, regulatory, and financial barriers to greater data sharing, linkage, and use. What emerged was the foundational role of trust in achieving the full vision of a learning health system.
This Special Publication outlines a number of potentially valuable policy changes and actions that will help drive toward effective, efficient, and ethical data sharing, including more compelling and widespread communication efforts to improve awareness, understanding, and participation in data sharing. Achieving the vision of a learning health system will require eliminating the artificial boundaries that exist today among patient care, health system improvement, and research. Breaking down these barriers will require an unrelenting commitment across multiple stakeholders toward a shared goal of better, more equitable health.
We can improve together by sharing and using data in ways that produce trust and respect. Patients and families deserve nothing less.
Topics: Health and Medicine » Policy, Reviews and Evaluations | Computers and Information Technology » Information Security and Privacy
In response to a growing national awareness that the development and use of new diagnostic, therapeutic, and preventive interventions had been occurring at a quickening pace—one far outstripping the evidence necessary to make informed decisions about their comparative advantage—the Patient-Centered Outcomes Research Institute (PCORI) was established in 2010 as part of the Affordable Care Act legislation. PCORI is guided by the imperative to help patients, families, clinicians, and other health care stakeholders make better informed health care decisions and improve care and outcomes. To inform the next steps in its organizational strategy, PCORI enlisted the National Academy of Medicine (NAM) to leverage its deep experience in convening experts on matters of significant national importance, including its long-standing thought leadership role in the realization of a learning health system. The NAM formed a multi-stakeholder workgroup and held two virtual convenings with the objective of engaging with patients, clinicians, health system leaders, researchers, and other stakeholders from the broader health community to identify and discuss high-priority emerging issues in health, health care, and biomedical science and technology. The key messages from these meetings are outlined in the Special Publication Priorities on the Health Horizon: Informing PCORI's Strategic Plan.
Given the breadth of the domains considered in the Priorities on the Health Horizon meetings—emerging technologies, social and environmental factors, optimizing value, and infrastructure—a formidable set of pressing health and health care research needs were reviewed and discussed. In addition, certain fundamental strategic priorities emerged as basic and critical to progress in the field: (1) the need to reorient research perspectives and activities to patient and family priorities and values, and in particular, those conditions that drive inequities; (2) the need to foster strategic learning partnerships across groups, organizations, and sectors; and (3) the need to build the continuous learning infrastructure to produce new insights at the pace and scale necessary for health and health care improvement.
Moving forward, building the capacity to continuously improve learning and sharing throughout the system will entail stakeholders working together as seamlessly as possible. The NAM and PCORI worked together to facilitate an expansive dialogue with key stakeholders and engender trust through a focus on shared commitments to progress on improving health for all Americans in the decade ahead.
Topics: Health and Medicine » Policy, Reviews and Evaluations
The United States is in the midst of an urgent and complex opioid crisis. To address how education and training can more effectively respond to this crisis, we must have a better understanding of problems in practice—or professional practice gaps—for health professionals and teams in practice. A coordinated response requires identifying and addressing professional practice gaps (PPGs) related to pain management, opioid use disorder, and other substance use disorder (SUD) care, as well as integrating evidence-based best practices into health professional education and training curricula across the continuum from undergraduate training into post-graduate continuing education This Special Publication presents two information-gathering efforts to assess persisting PPGs pertaining to pain management and SUD care and to better understand the current health professional education environment: the first is a comprehensive literature review, and the second is a survey of the regulatory landscape.
The results underscore the need to collaboratively develop a harmonized interprofessional, person- and family-centered approach for the continuum of health professions education to more effectively address the opioid crisis.
In this Special Publication, the Health Professional Education and Training Workgroup of the National Academy of Medicine’s Action Collaborative on Countering the U.S. Opioid Epidemic identified five action-oriented priorities to support this goal:
With due effort and support, these approaches will amplify effective practices while harmonizing and improving the environment for health care professionals to best serve the needs of their patients and communities.
Topics: Health and Medicine » Public Health and Prevention | Health and Medicine » Policy, Reviews and Evaluations
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.
Topics: Health and Medicine » Healthcare and Quality | Computers and Information Technology » Information Security and Privacy | Health and Medicine » Policy, Reviews and Evaluations
Genetic and genomic information has become far more accessible, and research using human genetic data has grown exponentially over the past decade. Genetics and genomics research is now being conducted by a wide range of investigators across disciplines, who often use population descriptors inconsistently and/or inappropriately to capture the complex patterns of continuous human genetic variation.
In response to a request from the National Institutes of Health, the National Academies assembled an interdisciplinary committee of expert volunteers to conduct a study to review and assess existing methodologies, benefits, and challenges in using race, ethnicity, ancestry, and other population descriptors in genomics research. The resulting report focuses on understanding the current use of population descriptors in genomics research, examining best practices for researchers, and identifying processes for adopting best practices within the biomedical and scientific communities.
Topics: Health and Medicine » Genetics | Health and Medicine » Health Sciences | Behavioral and Social Sciences » Population Studies
Nonhuman primates represent a small fraction of animals used in biomedical research, but they remain important research models due to their similarities to humans with respect to genetic makeup, anatomy, physiology, and behavior. Limitations in the availability of nonhuman primates have been exacerbated by the COVID-19 pandemic and recent restrictions on their exportation and transportation, impacting National Institutes of Health (NIH)-funded research necessary for both public health and national security. Additionally, there is continued interest in understanding whether and how nonanimal models can be used to answer scientific questions for which nonhuman primates are currently used.
At the direction of the U.S. Congress, NIH asked the National Academies of Sciences, Engineering, and Medicine to convene an expert committee to conduct a landscape analysis of current and future use of nonhuman primates in NIH-supported biomedical research, as well as opportunities for new approach methodologies to complement or reduce reliance on nonhuman primate models. This report provides the committee findings and conclusions.
Topics: Biology and Life Sciences » Laboratory Animal Research | Health and Medicine » Health Sciences | Health and Medicine » Policy, Reviews and Evaluations
The Comprehensive Addiction and Recovery Act (CARA; P.L. 114-198) was signed into law in 2016 to help address the challenges of overdose deaths and opioid use disorder, and to expand access to evidence-based treatment. Among these efforts was the authorization of four grant programs to be overseen by the Substance Abuse and Mental Health Services Administration (SAMHSA).
In 2018, SAMHSA requested that the National Academies establish a committee to conduct a review of the four programs, which focus primarily on opioids, but occasionally include treatment and recovery services for co-occurring substance use disorders. The review resulted in three consensus study reports over five years. This third and final report aims to (1) understand the processes of the four grant programs; actions taken by grantees and their partners; impacts to clients, patients, the community, and public; and structural or environmental changes that might have resulted from grant funding, and (2) analyze how future congressionally mandated evaluations can be structured and carried out to better support policy makers.
Topics: Health and Medicine » Public Health and Prevention | Health and Medicine » Policy, Reviews and Evaluations
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.
Topics: Health and Medicine » Military and Veterans | Health and Medicine » Healthcare and Quality | Health and Medicine » Policy, Reviews and Evaluations
The COVID-19 pandemic spurred a rapid expansion of wastewater-based infectious disease surveillance systems to monitor and anticipate disease trends in communities.The Centers for Disease Control and Prevention (CDC) launched the National Wastewater Surveillance System in September 2020 to help coordinate and build upon those efforts. Produced at the request of CDC, this report reviews the usefulness of community-level wastewater surveillance during the pandemic and assesses its potential value for control and prevention of infectious diseases beyond COVID-19.
Wastewater-based Disease Surveillance for Public Health Action concludes that wastewater surveillance is and will continue to be a valuable component of infectious disease management. This report presents a vision for a national wastewater surveillance system that would track multiple pathogens simultaneously and pivot quickly to detect emerging pathogens, and it offers recommendations to ensure that the system is flexible, equitable, and economically sustainable for informing public health actions. The report also recommends approaches to address ethical and privacy concerns and develop a more representative wastewater surveillance system. Predictable and sustained federal funding as well as ongoing coordination and collaboration among many partners will be critical to the effectiveness of efforts moving forward.
Topics: Environment and Environmental Studies » Water Quality | Health and Medicine » Environmental Health | Health and Medicine » Public Health and Prevention
The Dietary Reference Intakes (DRIs) are a set of reference values that encompass a safe range of intake and provide recommended nutrient intakes for the United States and Canada. The DRIs for energy are used widely to provide guidance for maintaining energy balance on both an individual and group level.
U.S. and Canadian governments asked the National Academies to convene an expert committee to examine available evidence and provide updated Estimated Energy Requirements (EERs) for their populations. The resulting report presents EER equations that provide a baseline for dietary planners and assessors who are estimating energy needs and monitoring energy balance to enhance the general health of individuals and populations.
Topics: Food and Nutrition » Nutrition - Dietary Reference Intakes | » Health and Medicine
In mid-2022, the United States has lost more than 1 million people to the COVID-19 pandemic. We have been real-time witnesses to scores of heroic responses to the disease, death, inequity, and economic strife unleashed by the virus, but have also experienced the consequences of poor pandemic preparedness and long-standing structural failures in our health system.
For decades, the U.S. health system has fallen far short of its potential to support and improve individual and population health. The COVID-19 pandemic has presented death and devastation—but also an unprecedented opportunity to truly transform U.S. health, health care, and health delivery.
To capitalize on this opportunity, the National Academy of Medicine gathered field leaders from across all of the major health system sectors to assess how each sector has responded to the pandemic and the opportunities that exist for health system transformation. The opportunity is now to capitalize on the hard-won lessons of COVID-19 and build a health care system that centers patients, families, and communities; cares for clinicians; supports care systems, public health, and biomedical research to perform at the best of their abilities; applies innovations from digital health and quality, safety, and standards organizations; and encourages health care payers and health product manufacturers and innovators to produce products that benefit all.
Topics: Health and Medicine » Public Health and Prevention
Regular use of sunscreens has been shown to reduce the risk of sunburn and skin cancer, and slow photoaging of skin. Sunscreens can rinse off into water where people are swimming or wading, and can also enter bodies of water through wastewater such as from bathing or showering. As a result, the ultraviolet (UV) filters - the active ingredients in sunscreens that reduce the amount of UV radiation on skin - have been detected in the water, sediment, and animal tissues in aquatic environments. Because the impact of these filters on aquatic ecosystems is not fully understood, assessment is needed to better understand their environmental impacts.
This report calls on the U.S. Environmental Protection Agency to conduct an ecological risk assessment of UV filters to characterize the possible risks to aquatic ecosystems and the species that live in them. EPA should focus on environments more likely to be exposed such as those with heavy recreational use, or where wastewater and urban runoff enter the water. The risk assessment should cover a broad range of species and biological effects and could consider potential interacting effects among UV filters and with other environmental stresses such as climate change. In addition, the report describes the role of sunscreens in preventing skin cancer and what is known about how human health could be affected by potential changes in usage. While the need for a risk assessment is urgent, research is needed to advance understanding of both risks to the environment from UV filters and impacts to human health from changing sunscreen availability and usage.
Topics: Environment and Environmental Studies » Environmental Health and Safety | Health and Medicine » Public Health and Prevention
With unprecedented global aging, societies must undertake all-of-society efforts to maximize the benefits and minimize the burdens of aging populations. The Global Roadmap for Healthy Longevity (Global Roadmap) describes a realistic vision of healthy longevity that could be achieved by 2050. The vision includes full inclusion of people of all ages, regardless of health or functional status, in all aspects of society and societies characterized by social cohesion and equity.
To achieve the vision, Global Roadmap recommends changes that need to be made to health systems, social infrastructure, physical environments, education, work, and retirement. In some cases, the recommended changes benefit older people most directly, but when older people thrive, people of all ages benefit. If taken up, the recommendations of this report can support individuals of all ages in all corners of the globe to live long, meaningful, and purpose-driven lives by 2050.
Topics: Health and Medicine » Global Health | Health and Medicine » Policy, Reviews and Evaluations
Heritable disorders of connective tissue (HDCTs) are a diverse group of inherited genetic disorders and subtypes. Because connective tissue is found throughout the body, the impairments associated with HDCTs manifest in multiple body systems and may change or vary in severity throughout an affected individual's lifetime. In some cases, these impairments may be severe enough to qualify an eligible child or adult for monetary benefits through the U.S. Social Security Administration's (SSA's) Social Security Disability Insurance or Supplemental Security Income program. SSA asked the National Academies of Sciences, Engineering, and Medicine to convene an expert committee that would provide current information regarding the diagnosis, treatment, and prognosis of selected HDCTs, including Marfan syndrome and the Ehlers-Danlos syndromes, and the effect of the disorders and their treatment on functioning. The resulting report, Selected Heritable Disorders of Connective Tissue and Disability, presents the committee's findings and conclusions.
Topics: Health and Medicine » Health Sciences | Health and Medicine » Policy, Reviews and Evaluations
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, Sjogren'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.
Topics: Health and Medicine » Healthcare and Quality | Health and Medicine » Other Diseases | Health and Medicine » Policy, Reviews and Evaluations
In thousands of communities across the United States, drinking water is contaminated with chemicals known as perfluoroalkyl and polyfluoroalkyl substances (PFAS). PFAS are used in a wide range of products, such as non-stick cookware, water and stain repellent fabrics, and fire-fighting foam, because they have properties that repel oil and water, reduce friction, and resist temperature changes. PFAS can leak into the environment where they are made, used, disposed of, or spilled. PFAS exposure has been linked to a number of adverse health effects including certain cancers, thyroid dysfunction, changes in cholesterol, and small reductions in birth weight.
This report recommends that the Centers for Disease Control and Prevention (CDC) update its clinical guidance to advise clinicians to offer PFAS blood testing to patients who are likely to have a history of elevated exposure, such as those with occupational exposures or those who live in areas known to be contaminated. If testing reveals PFAS levels associated with an increased risk of adverse effects, patients should receive regular screenings and monitoring for these and other health impacts. Guidance on PFAS Exposure, Testing, and Clinical Follow-Up recommends that the CDC, Agency for Toxic Substances and Disease Registry (ATSDR), and public health departments support clinicians by creating educational materials on PFAS exposure, potential health effects, the limitations of testing, and the benefits and harms of testing.
Topics: Environment and Environmental Studies » Environmental Health and Safety | Health and Medicine » Environmental Health
The U.S. Centers for Disease Control and Prevention (CDC) is responsible for preventing the introduction, transmission, and spread of communicable diseases into the United States. It does this primarily through the Division of Global Migration and Quarantine (DGMQ), which oversees the federal quarantine station network. Over the past two decades, the frequency and volume of microbial threats worldwide have continued to intensify. The COVID-19 pandemic, in particular, has prompted a reevaluation of many of our current disease control mechanisms, including the use and role of quarantine as a public health tool.
The emergence of COVID-19 prompted CDC to request that the National Academies of Sciences, Engineering, and Medicine convene a committee to assess the role of DGMQ and the federal quarantine station network in mitigating the risk of onward communicable disease transmission in light of changes in the global environment, including large increases in international travel, threats posed by emerging infections, and the movement of animals and cargo. The committee was also tasked with identifying how lessons learned during COVID-19 and other public health emergencies can be leveraged to strengthen pandemic response. The report's findings and recommendations span five domains: organizational capacity, disease control and response efforts, new technologies and data systems, coordination and collaboration, and legal and regulatory authority.
Topics: Health and Medicine » Public Health and Prevention | Health and Medicine » Infectious Disease | Health and Medicine » Policy, Reviews and Evaluations
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.
Topics: Health and Medicine » Healthcare and Quality | Computers and Information Technology » Information Technology
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.
Topics: Health and Medicine » Healthcare and Quality | Health and Medicine » Policy, Reviews and Evaluations
Over the past several decades, supply chain disruptions have repeatedly plagued the U.S. health care system, costing health care systems millions of dollars per year, threatening the clinical research enterprise, and most importantly, imperiling the health and lives of patients. The Committee on Security of America's Medical Supply Chain, convened by the National Academies of Sciences, Engineering, and Medicine, was charged with addressing this important issue by examining the root causes of medical product shortages and identifying ways to enhance their resilience - both in so-called normal times and during public health emergencies.
Building Resilience into the Nation's Medical Product Supply Chains outlines the committee's seven recommendations and presents a framework of protection comprising awareness, mitigation, preparedness, and response measures.
Topics: Health and Medicine » Policy, Reviews and Evaluations
The early to mid-1990s saw a large surge in U.S. cigar consumption, including premium cigars. Based on recent import data, premium cigar use may be increasing, though they currently make up a small percent of the total U.S. cigar market. Premium cigars have also been the subject of legal and regulatory efforts for the past decade. In 1998, the National Cancer Institute undertook a comprehensive review of available knowledge about cigars - the only one to date. The resulting research recommendations have largely not been addressed, and many of the identified information gaps persist. Furthermore, there is no single, consistent definition of premium cigars, making research challenging.
In response, the Food and Drug Administration (FDA) and the National Institutes of Health commissioned the National Academies of Sciences, Engineering, and Medicine to convene a committee of experts to address this issue. The resulting report, Premium Cigars: Patterns of Use, Marketing, and Health Effects, includes 13 findings, 24 conclusions, and nine priority research recommendations and assesses the state of evidence on premium cigar characteristics, current patterns of use, marketing and perceptions of the product, and short- long-term health effects.
Topics: Health and Medicine » Policy, Reviews and Evaluations
Autoimmune diseases occur when the body's immune system malfunctions and mistakenly attacks healthy cells, tissues, and organs. Strong data on the incidence and prevalence of autoimmune diseases are limited, but a 2009 study estimated the prevalence of autoimmune diseases in the U.S. to be 7.6 to 9.4 percent, or 25 to 31 million people today. This estimate, however, includes only 29 autoimmune diseases, and it does not account for increases in prevalence in the last decade. By some counts, there are around 150 autoimmune diseases, which are lifelong chronic illnesses with no known cures. The National Academies of Sciences, Engineering, and Medicine was asked to assess the autoimmune disease research portfolio of the National Institutes of Health (NIH).
Enhancing NIH Research on Autoimmune Disease finds that while NIH has made impressive contributions to research on autoimmune diseases, there is an absence of a strategic NIH-wide autoimmune disease research plan and a need for greater coordination across the institutes and centers to optimize opportunities for collaboration. To meet these challenges, this report calls for the creation of an Office of Autoimmune Disease/Autoimmunity Research in the Office of the Director of NIH. The Office could facilitate NIH-wide collaboration, and engage in prioritizing, budgeting, and evaluating research. Enhancing NIH Research on Autoimmune Disease also calls for the establishment of long term systems to collect epidemiologic and surveillance data and long term studies (20+ years) to study disease across the life course. Finally, the report provides an agenda that highlights research needs that crosscut many autoimmune diseases, such as understanding the effect of environmental factors in initiating disease.
Topics: Health and Medicine » Health Sciences | Health and Medicine » Other Diseases | Health and Medicine » Policy, Reviews and Evaluations
Each year, the individuals and organizations in the U.S. organ donation, procurement, allocation, and distribution system work together to provide transplants to many thousands of people, but thousands more die before getting a transplant due to the ongoing shortage of deceased donor organs and inequitable access to transplant waiting lists.
Realizing the Promise of Equity in the Organ Transplantation System, a new consensus study report from the National Academies of Sciences, Engineering, and Medicine’s Committee on A Fairer and More Equitable, Cost-Effective, and Transparent System of Donor Organ Procurement, Allocation, and Distribution, provides expert recommendations to improve fairness, equity, transparency, and cost-effectiveness in the donor organ system.
Topics: Health and Medicine » Medical Technologies and Treatments
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.
Topics: Health and Medicine » Health Sciences | Health and Medicine » Healthcare and Quality | Health and Medicine » Medical Technologies and Treatments
Individuals in the United States and Americans abroad are exposed to inhalation hazards from a variety of sources, and these hazards can have both short- and long-term adverse effects on health. For example, exposure to wildfire smoke, which contains particulate matter and toxic chemicals, can lead to respiratory problems, increased risk for heart attacks, and other adverse health outcomes. Individuals also may be exposed to airborne infectious agents through aerosol or droplet transmission, and as demonstrated by the COVID-19 pandemic, the individual and public health consequences of these exposures can be severe. Storms, floods, and hurricanes can increase exposure to moisture-driven hazards, such as mold, and to accidental releases from production facilities or transport vehicles that may result in chemical exposures.
The current regulatory system is focused primarily on ensuring access to respiratory protection in occupational settings characterized by well-defined hazards and employer-employee relationships. With this narrow regulatory focus, the respiratory protection needs of the public and many workers are not being met. As climate change increases the incidence and severity of wildfires, hurricanes, floods, infectious disease outbreaks, and other phenomena that impact air quality and human health, it is imperative that the United States ensure that the respiratory protection needs of the public and all workers are met. Recognizing the urgent need to address the gaps in the nation's ability to meet the respiratory protection needs of the public and workers without workplace respiratory protection programs, this report makes recommendations for a framework of responsibilities and authorities that would provide a unified and authoritative source of information and effective oversight for the development, approval, and use of respiratory protection.
Topics: Health and Medicine » Occupational and Workplace Health | Health and Medicine » Public Health and Prevention | Health and Medicine » Policy, Reviews and Evaluations
Closing Evidence Gaps in Clinical Prevention, a new consensus study report from the National Academies of Sciences, Engineering, and Medicine's Board on Population Health and Public Health Practice, evaluates evidence gaps in clinical prevention recommendations described by the United States Preventive Services Task Force and other clinical practice guideline developers and presents a taxonomy of these evidence gaps for future use. This report aims to improve the coordination of efforts to describe and communicate priority evidence gaps among funders and researchers. It also proposes new opportunities for collaboration among researchers, funders, and guideline developers to accelerate research that could close evidence gaps.
The authoring committee has also developed an interactive graphic that can be used as a workflow diagram for implementing the taxonomy. This workflow walks users through reviewing evidence, characterizing evidence gaps using relevant taxonomies, and developing a research agenda. Click here to view and engage with the interactive graphic.
Topics: Health and Medicine » Public Health and Prevention | Health and Medicine » Policy, Reviews and Evaluations
Service dogs have been promoted as a potential intervention for veterans with posttraumatic stress disorder (PTSD); however, research supporting their effectiveness is limited. At the request of the U.S. Department of Veterans Affairs (VA), the National Academies provided iterative reviews of a VA monograph that assesses the economic impact and cost effectiveness of programs involving trained service dogs or emotional support dogs and veterans with PTSD. The reviews evaluated the draft monograph with regard to consistency and the use of accepted scientific principles. Working from this input, the VA finalized and released the monograph, The Economic Impact and Cost Effectiveness of Service Dogs for Veterans with Post Traumatic Stress Disorder, in January 2022.
Topics: Health and Medicine » Military and Veterans | Health and Medicine » Mental Health and Behavior | Health and Medicine » Policy, Reviews and Evaluations
Antimicrobial resistance is a health problem that threatens to undermine almost a century of medical progress. Moreover, it is a global problem that requires action both in the United States and internationally.
Combating Antimicrobial Resistance and Protecting the Miracle of Modern Medicine discusses ways to improve detection of resistant infections in the United States and abroad, including monitoring environmental reservoirs of resistance. This report sets out a strategy for improving stewardship and preventing infections in humans and animals. The report also discusses the strength of the pipeline for new antimicrobial medicines and steps that could be taken to bring a range of preventive and therapeutic products for humans and animals to the market.
Topics: Health and Medicine » Health Sciences | Health and Medicine » Public Health and Prevention | Health and Medicine » Policy, Reviews and Evaluations
The global response to COVID-19 has demonstrated the importance of vigilance and preparedness for infectious diseases, particularly influenza. There is a need for more effective influenza vaccines and modern manufacturing technologies that are adaptable and scalable to meet demand during a pandemic. The rapid development of COVID-19 vaccines has demonstrated what is possible with extensive data sharing, researchers who have the necessary resources and novel technologies to conduct and apply their research, rolling review by regulators, and public-private partnerships. As demonstrated throughout the response to COVID-19, the process of research and development of novel vaccines can be significantly optimized when stakeholders are provided with the resources and technologies needed to support their response.
Vaccine Research and Development to Advance Pandemic and Seasonal Influenza Preparedness and Response focuses on how to leverage the knowledge gained from the COVID-19 pandemic to optimize vaccine research and development (R&D) to support the prevention and control of seasonal and pandemic influenza. The committee's findings address four dimensions of vaccine R&D: (1) basic and translational science, (2) clinical science, (3) manufacturing science, and (4) regulatory science.
Topics: Health and Medicine » Public Health and Prevention | Health and Medicine » Infectious Disease | Health and Medicine » Policy, Reviews and Evaluations
The COVID-19 pandemic has challenged the world's preparedness for a respiratory virus event. While the world has been combating COVID-19, seasonal and pandemic influenza remain imminent global health threats. Non-vaccine public health control measures can combat emerging and ongoing influenza outbreaks by mitigating viral spread.
Public Health Lessons for Non-Vaccine Influenza Interventions examines provides conclusions and recommendations from an expert committee on how to leverage the knowledge gained from the COVID-19 pandemic to optimize the use of public health interventions other than vaccines to decrease the toll of future seasonal and potentially pandemic influenza. It considers the effectiveness of public health efforts such as use of masks and indoor spacing, use of treatments such as monoclonal antibodies, and public health communication campaigns.
Topics: Health and Medicine » Public Health and Prevention | Health and Medicine » Infectious Disease | Health and Medicine » Policy, Reviews and Evaluations
The COVID-19 pandemic has laid bare the fragility of the global system of preparedness and response to pandemics and the fragmentation of our research and development ecosystem. The pandemic has provided a disruptive moment to advance new norms and frameworks for influenza. It also has demonstrated how innovative global public-private partnerships and coordination mechanisms can lead to rapid successes in viral vaccine research, manufacturing, and risk pooling.
Countering the Pandemic Threat Through Global Coordination on Vaccines identifies ways to strengthen pandemic and seasonal influenza global coordination, partnerships, and financing. This report presents seven overarching recommendations for how the urgent influenza threat should be conceptualized and prioritized within the global pandemic preparedness and response agenda in the future.
Topics: Health and Medicine » Public Health and Prevention | Health and Medicine » Infectious Disease | Health and Medicine » Policy, Reviews and Evaluations
Influenza viruses, both seasonal and pandemic, have the potential to disrupt the health and well-being of populations around the world. The global response to the COVID-19 pandemic and prior public health emergencies of international concern illustrate the importance of global preparedness and coordination among governments, academia, scientists, policy makers, nongovernmental organizations, the private sector, and the public to address the threat of pandemic influenza. These health emergencies have revealed opportunities to enhance global vaccine infrastructure, manufacturing, distribution, and administration.
Globally Resilient Supply Chains for Seasonal and Pandemic Influenza Vaccines outlines key findings and recommendations to bolster vaccine distribution, manufacturing, and supply chains for future seasonal and pandemic influenza events. This report addresses the challenges of manufacturing and distributing vaccines for both seasonal and pandemic influenza, highlighting the critical components of vaccine manufacturing and distribution and offering recommendations that would address gaps in the current global vaccine infrastructure.
Topics: Health and Medicine » Public Health and Prevention | Health and Medicine » Infectious Disease | Health and Medicine » Policy, Reviews and Evaluations
The U.S. medical countermeasures (MCMs) enterprise is interconnected, complex, and dynamic. It includes public and private entities that develop and manufacture new and existing MCMs, ensure procurement, storage, and distribution of MCMs, and administer, monitor, and evaluate MCMs. The interagency group known as the Public Health Emergency Medical Countermeasures Enterprise (PHEMCE) is the nation's sole coordinating body, responsible for ensuring end-to-end MCM preparedness and response.
Ensuring an Effective Public Health Emergency Medical Countermeasures Enterprise provides recommendations from an expert committee for a re-envisioned PHEMCE. Four priority areas of improvement emerged from committee deliberations: (1) articulating PHEMCE's mission and role and explicating the principles guiding PHEMCE's operating principles and processes, (2) revising PHEMCE operations and processes, (3) collaborating more effectively with external public and private partners, and (4) navigating legal and policy issues.
Topics: Health and Medicine » Public Health and Prevention | Health and Medicine » Emergency Medicine | Health and Medicine » Health Sciences
As the largest generation in U.S. history - the population born in the two decades immediately following World War II - enters the age of risk for cognitive impairment, growing numbers of people will experience dementia (including Alzheimer's disease and related dementias). By one estimate, nearly 14 million people in the United States will be living with dementia by 2060. Like other hardships, the experience of living with dementia can bring unexpected moments of intimacy, growth, and compassion, but these diseases also affect people's capacity to work and carry out other activities and alter their relationships with loved ones, friends, and coworkers. Those who live with and care for individuals experiencing these diseases face challenges that include physical and emotional stress, difficult changes and losses in their relationships with life partners, loss of income, and interrupted connections to other activities and friends. From a societal perspective, these diseases place substantial demands on communities and on the institutions and government entities that support people living with dementia and their families, including the health care system, the providers of direct care, and others.
Nevertheless, research in the social and behavioral sciences points to possibilities for preventing or slowing the development of dementia and for substantially reducing its social and economic impacts. At the request of the National Institute on Aging of the U.S. Department of Health and Human Services, Reducing the Impact of Dementia in America assesses the contributions of research in the social and behavioral sciences and identifies a research agenda for the coming decade. This report offers a blueprint for the next decade of behavioral and social science research to reduce the negative impact of dementia for America's diverse population. Reducing the Impact of Dementia in America calls for research that addresses the causes and solutions for disparities in both developing dementia and receiving adequate treatment and support. It calls for research that sets goals meaningful not just for scientists but for people living with dementia and those who support them as well.
By 2030, an estimated 8.5 million Americans will have Alzheimer's disease and many more will have other forms of dementia. Through identifying priorities social and behavioral science research and recommending ways in which they can be pursued in a coordinated fashion, Reducing the Impact of Dementia in America will help produce research that improves the lives of all those affected by dementia.
Topics: Behavioral and Social Sciences » Aging | Health and Medicine » Mental Health and Behavior | Behavioral and Social Sciences » Policy, Reviews and Evaluations
The decade ahead will test the nation's nearly 4 million nurses in new and complex ways. Nurses live and work at the intersection of health, education, and communities. Nurses work in a wide array of settings and practice at a range of professional levels. They are often the first and most frequent line of contact with people of all backgrounds and experiences seeking care and they represent the largest of the health care professions.
A nation cannot fully thrive until everyone - no matter who they are, where they live, or how much money they make - can live their healthiest possible life, and helping people live their healthiest life is and has always been the essential role of nurses. Nurses have a critical role to play in achieving the goal of health equity, but they need robust education, supportive work environments, and autonomy. Accordingly, at the request of the Robert Wood Johnson Foundation, on behalf of the National Academy of Medicine, an ad hoc committee under the auspices of the National Academies of Sciences, Engineering, and Medicine conducted a study aimed at envisioning and charting a path forward for the nursing profession to help reduce inequities in people's ability to achieve their full health potential. The ultimate goal is the achievement of health equity in the United States built on strengthened nursing capacity and expertise. By leveraging these attributes, nursing will help to create and contribute comprehensively to equitable public health and health care systems that are designed to work for everyone.
The Future of Nursing 2020-2030: Charting a Path to Achieve Health Equity explores how nurses can work to reduce health disparities and promote equity, while keeping costs at bay, utilizing technology, and maintaining patient and family-focused care into 2030. This work builds on the foundation set out by The Future of Nursing: Leading Change, Advancing Health (2011) report.
Topics: Health and Medicine » Health Equity | Health and Medicine » Healthcare and Quality | Health and Medicine » Policy, Reviews and Evaluations
One in five people in the United States had a sexually transmitted infection (STI) on any given day in 2018, totaling nearly 68 million estimated infections. STIs are often asymptomatic (especially in women) and are therefore often undiagnosed and unreported. Untreated STIs can have severe health consequences, including chronic pelvic pain, infertility, miscarriage or newborn death, and increased risk of HIV infection, genital and oral cancers, neurological and rheumatological effects. In light of this, the Centers for Disease Control and Prevention, through the National Association of County and City Health Officials, commissioned the National Academies of Sciences, Engineering, and Medicine to convene a committee to examine the prevention and control of sexually transmitted infections in the United States and provide recommendations for action.
In 1997, the Institute of Medicine released a report, The Hidden Epidemic: Confronting Sexually Transmitted Diseases. Although significant scientific advances have been made since that time, many of the problems and barriers described in that report persist today; STIs remain an underfunded and comparatively neglected field of public health practice and research. The committee reviewed the current state of STIs in the United States, and the resulting report, Sexually Transmitted Infections: Advancing a Sexual Health Paradigm, provides advice on future public health programs, policy, and research.
Topics: Health and Medicine » Infectious Disease | Health and Medicine » Public Health and Prevention | Health and Medicine » Policy, Reviews and Evaluations
Each year, tens of millions of individuals in the U.S. suffer from neurological and psychiatric disorders including neurodegenerative diseases such as Alzheimer's Disease and Parkinson's Disease, and psychiatric disorders such as autism spectrum disorder, depression and schizophrenia. Treatments for these diseases are often completely lacking or only partially effective, due in large part to the difficulty of conducting brain research and the complexity of the brain itself.
Researchers in recent years have developed new models to better represent and study the human brain. The three models considered in this report, all of which generate and use pluripotent stem cells from healthy individuals and patients, are human neural organoids, human neural transplants, and human-animal neural chimeras. The Emerging Field of Human Neural Organoids, Transplants, and Chimeras: Science, Ethics, and Governance reviews the status of research, considers its benefits and risks, discusses associated ethical issues, and considers governance mechanisms for this type of research.
Topics: Health and Medicine » Medical Technologies and Treatments | Health and Medicine » Health Sciences | Health and Medicine » Policy, Reviews and Evaluations
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.
Topics: Health and Medicine » Healthcare and Quality | Health and Medicine » Health Equity | Health and Medicine » Policy, Reviews and Evaluations
Millions of people are living with dementia in the United States and globally. To live well with dementia, people need care, services, and supports that reflect their values and preferences, build on their strengths and abilities, promote well-being, and address needs that evolve as cognitive impairment deepens.
Persons living with dementia co-manage their care with or rely on the support of a wide range of care partners and caregivers, including spouses, other family members and friends, and direct care workers in homes or residential care settings. While dementia care has improved since the 1970s, many individuals still lack access to high-quality care and are not living as well as they might. Disadvantaged groups, especially racial and ethnic minorities, still face challenges in access to care, services, and supports, due to deep and persistent inequities.
Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward examines the complex body of evidence on dementia care and informs decision making about which interventions are ready to be broadly disseminated and implemented. It also offers a blueprint to guide future research using rigorous, cutting-edge methods that are inclusive, equitable, and yield critical information for real-world implementation, toward the ultimate goal of better supporting persons living with dementia and their care partners and caregivers in living as well as possible.
Topics: Health and Medicine » Mental Health and Behavior | Health and Medicine » Aging | Health and Medicine » Healthcare and Quality
Student wellbeing is foundational to academic success. One recent survey of postsecondary educators found that nearly 80 percent believed emotional wellbeing is a "very" or "extremely" important factor in student success. Studies have found the dropout rates for students with a diagnosed mental health problem range from 43 percent to as high as 86 percent. While dealing with stress is a normal part of life, for some students, stress can adversely affect their physical, emotional, and psychological health, particularly given that adolescence and early adulthood are when most mental illnesses are first manifested. In addition to students who may develop mental health challenges during their time in postsecondary education, many students arrive on campus with a mental health problem or having experienced significant trauma in their lives, which can also negatively affect physical, emotional, and psychological wellbeing.
The nation's institutions of higher education are seeing increasing levels of mental illness, substance use and other forms of emotional distress among their students. Some of the problematic trends have been ongoing for decades. Some have been exacerbated by the COVID-19 pandemic and resulting economic consequences. Some are the result of long-festering systemic racism in almost every sphere of American life that are becoming more widely acknowledged throughout society and must, at last, be addressed.
Mental Health, Substance Use, and Wellbeing in Higher Education lays out a variety of possible strategies and approaches to meet increasing demand for mental health and substance use services, based on the available evidence on the nature of the issues and what works in various situations. The recommendations of this report will support the delivery of mental health and wellness services by the nation's institutions of higher education.
Topics: Health and Medicine » Mental Health and Behavior | Health and Medicine » Medical Technologies and Treatments | Education » Higher Education
At the request of the Social Security Administration (SSA), this publication reviews a commissioned report by Abt Associates on selected occupational requirements. SSA asked Abt to assemble information on the levels of social interaction and adaption required to perform tasks in these occupations for a given specific vocational preparation range. This review examines the suitability of the databases used, the soundness of the methodology used to connect occupational tasks to social interactive and adaptive functional capacities, and the appropriateness of the expertise gathered to perform the analysis.
Topics: Health and Medicine » Mental Health and Behavior | Health and Medicine » Healthcare and Quality | Health and Medicine » Policy, Reviews and Evaluations
Sickle cell disease (SCD) is a genetic condition that affects approximately 100,000 people in the United States and millions more globally. Individuals with SCD endure the psychological and physiological toll of repetitive pain as well as side effects from the pain treatments they undergo. Some adults with SCD report reluctance to use health care services, unless as a last resort, due to the racism and discrimination they face in the health care system. Additionally, many aspects of SCD are inadequately studied, understood, and addressed.
Addressing Sickle Cell Disease examines the epidemiology, health outcomes, genetic implications, and societal factors associated with SCD and sickle cell trait (SCT). This report explores the current guidelines and best practices for the care of patients with SCD and recommends priorities for programs, policies, and research. It also discusses limitations and opportunities for developing national SCD patient registries and surveillance systems, barriers in the healthcare sector associated with SCD and SCT, and the role of patient advocacy and community engagement groups.
Topics: Health and Medicine » Other Diseases | Health and Medicine » Medical Technologies and Treatments | Health and Medicine » Health Sciences
Heritable human genome editing - making changes to the genetic material of eggs, sperm, or any cells that lead to their development, including the cells of early embryos, and establishing a pregnancy - raises not only scientific and medical considerations but also a host of ethical, moral, and societal issues. Human embryos whose genomes have been edited should not be used to create a pregnancy until it is established that precise genomic changes can be made reliably and without introducing undesired changes - criteria that have not yet been met, says Heritable Human Genome Editing.
From an international commission of the U.S. National Academy of Medicine, U.S. National Academy of Sciences, and the U.K.'s Royal Society, the report considers potential benefits, harms, and uncertainties associated with genome editing technologies and defines a translational pathway from rigorous preclinical research to initial clinical uses, should a country decide to permit such uses. The report specifies stringent preclinical and clinical requirements for establishing safety and efficacy, and for undertaking long-term monitoring of outcomes. Extensive national and international dialogue is needed before any country decides whether to permit clinical use of this technology, according to the report, which identifies essential elements of national and international scientific governance and oversight.
Topics: Health and Medicine » Genetics | Biology and Life Sciences » Genetics
In the wake of a large-scale disaster, from the initial devastation through the long tail of recovery, protecting the health and well-being of the affected individuals and communities is paramount. Accurate and timely information about mortality and significant morbidity related to the disaster are the cornerstone of the efforts of the disaster management enterprise to save lives and prevent further health impacts. Conversely, failure to accurately capture mortality and significant morbidity data undercuts the nation's capacity to protect its population. Information about disaster-related mortality and significant morbidity adds value at all phases of the disaster management cycle. As a disaster unfolds, the data are crucial in guiding response and recovery priorities, ensuring a common operating picture and real-time situational awareness across stakeholders, and protecting vulnerable populations and settings at heightened risk.
A Framework for Assessing Mortality and Morbidity After Large-Scale Disasters reviews and describes the current state of the field of disaster-related mortality and significant morbidity assessment. This report examines practices and methods for data collection, recording, sharing, and use across state, local, tribal, and territorial stakeholders; evaluates best practices; and identifies areas for future resource investment.
Topics: Health and Medicine » Emergency Medicine | Health and Medicine » Policy, Reviews and Evaluations
In response to the coronavirus disease 2019 (COVID-19) pandemic and the societal disruption it has brought, national governments and the international community have invested billions of dollars and immense amounts of human resources to develop a safe and effective vaccine in an unprecedented time frame. Vaccination against this novel coronavirus, severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), offers the possibility of significantly reducing severe morbidity and mortality and transmission when deployed alongside other public health strategies and improved therapies.
Health equity is intertwined with the impact of COVID-19 and there are certain populations that are at increased risk of severe illness or death from COVID-19. In the United States and worldwide, the pandemic is having a disproportionate impact on people who are already disadvantaged by virtue of their race and ethnicity, age, health status, residence, occupation, socioeconomic condition, or other contributing factors.
Framework for Equitable Allocation of COVID-19 Vaccine offers an overarching framework for vaccine allocation to assist policy makers in the domestic and global health communities. Built on widely accepted foundational principles and recognizing the distinctive characteristics of COVID-19, this report's recommendations address the commitments needed to implement equitable allocation policies for COVID-19 vaccine.
Topics: Health and Medicine » Infectious Disease | Health and Medicine » Health Equity | Health and Medicine » Medical Technologies and Treatments
The COVID-19 pandemic has presented unprecedented challenges to the nation's K-12 education system. The rush to slow the spread of the virus led to closures of schools across the country, with little time to ensure continuity of instruction or to create a framework for deciding when and how to reopen schools. States, districts, and schools are now grappling with the complex and high-stakes questions of whether to reopen school buildings and how to operate them safely if they do reopen. These decisions need to be informed by the most up-to-date evidence about the SARS-CoV-2 virus that causes COVID-19; about the impacts of school closures on students and families; and about the complexities of operating school buildings as the pandemic persists.
Reopening K-12 Schools During the COVID-19 Pandemic: Prioritizing Health, Equity, and Communities provides guidance on the reopening and operation of elementary and secondary schools for the 2020-2021 school year. The recommendations of this report are designed to help districts and schools successfully navigate the complex decisions around reopening school buildings, keeping them open, and operating them safely.
Topics: Education » K-12 Education | Health and Medicine » Infectious Disease | Health and Medicine » Children's Health
In December 2019, new cases of severe pneumonia were first detected in Wuhan, China, and the cause was determined to be a novel beta coronavirus related to the severe acute respiratory syndrome (SARS) coronavirus that emerged from a bat reservoir in 2002. Within six months, this new virus—SARS coronavirus 2 (SARS-CoV-2)—has spread worldwide, infecting at least 10 million people with an estimated 500,000 deaths. COVID-19, the disease caused by SARS-CoV-2, was declared a public health emergency of international concern on January 30, 2020 by the World Health Organization (WHO) and a pandemic on March 11, 2020. To date, there is no approved effective treatment or vaccine for COVID-19, and it continues to spread in many countries.
Genomic Epidemiology Data Infrastructure Needs for SARS-CoV-2: Modernizing Pandemic Response Strategies lays out a framework to define and describe the data needs for a system to track and correlate viral genome sequences with clinical and epidemiological data. Such a system would help ensure the integration of data on viral evolution with detection, diagnostic, and countermeasure efforts. This report also explores data collection mechanisms to ensure a representative global sample set of all relevant extant sequences and considers challenges and opportunities for coordination across existing domestic, global, and regional data sources.
Topics: Health and Medicine » Emergency Medicine | Health and Medicine » Infectious Disease | Health and Medicine » Health Sciences
The U.S. Food and Drug Administration (FDA) has approved dozens of hormone therapy products for men and women, including estrogen, progesterone, testosterone, and related compounds. These products have been reviewed for safety and efficacy and are indicated for treatment of symptoms resulting from hormonal changes associated with menopause or other endocrine-based disorders. In recent decades, an increasing number of health care providers and patients have turned to custom-formulated, or compounded, drug preparations as an alternative to FDA-approved drug products for hormone-related health concerns. These compounded hormone preparations are often marketed as "bioidentical" or "natural" and are commonly referred to as compounded bioidentical hormone therapy (cBHT).
In light of the fast-growing popularity of cBHT preparations, the clinical utility of these compounded preparations is a substantial public health concern for various stakeholders, including medical practitioners, patients, health advocacy organizations, and federal and state public health agencies. This report examines the clinical utility and uses of cBHT drug preparations and reviews the available evidence that would support marketing claims of the safety and effectiveness of cBHT preparations. It also assesses whether the available evidence suggests that these preparations have clinical utility and safety profiles warranting their clinical use and identifies patient populations that might benefit from cBHT preparations in lieu of FDA-approved BHT.
Topics: Health and Medicine » Health Sciences | Health and Medicine » Medical Technologies and Treatments | Health and Medicine » Policy, Reviews and Evaluations
Recommendations for feeding infants and young children have changed substantially over time owing to scientific advances, cultural influences, societal trends, and other factors. At the same time, stronger approaches to reviewing and synthesizing scientific evidence have evolved, such that there are now established protocols for developing evidence-based health recommendations. However, not all authoritative bodies have used such approaches for developing infant feeding guidance, and for many feeding questions there is little or no sound evidence available to guide best practices, despite the fact that research on infant and young child feeding has expanded in recent decades. Summarizing the current landscape of feeding recommendations for infants and young children can reveal the level of consistency of existing guidance, shed light on the types of evidence that underpin each recommendation, and provide insight into the feasibility of harmonizing guidelines.
Feeding Infants and Children from Birth to 24 Months collects, compares, and summarizes existing recommendations on what and how to feed infants and young children from birth to 24 months of age. This report makes recommendations to stakeholders on strategies for communicating and disseminating feeding recommendations.
Topics: Food and Nutrition » Diet and Health | Health and Medicine » Children's Health | Food and Nutrition » Policy, Reviews and Evaluations
Pain is both a symptom and a disease. It manifests in multiple forms and its treatment is complex. Physical, social, economic, and emotional consequences of pain can impair an individual's overall health, well-being, productivity, and relationships in myriad ways. The impact of pain at a population level is vast and, while estimates differ, the Centers for Disease Control and Prevention reported that 50 million U.S. adults are living in pain. In terms of pain's global impact, estimates suggest the problem affects approximately 1 in 5 adults across the world, with nearly 1 in 10 adults newly diagnosed with chronic pain each year.
In recent years, the issues surrounding the complexity of pain management have contributed to increased demand for alternative strategies for treating pain. One such strategy is to expand use of topical pain medications—medications applied to intact skin. This nonoral route of administration for pain medication has the potential benefit, in theory, of local activity and fewer systemic side effects. Compounding is an age-old pharmaceutical practice of combining, mixing, or adjusting ingredients to create a tailored medication to meet the needs of a patient. The aim of compounding, historically, has been to provide patients with access to therapeutic alternatives that are safe and effective, especially for people with clinical needs that cannot otherwise be met by commercially available FDA-approved drugs.
Compounded Topical Pain Creams explores issues regarding the safety and effectiveness of the ingredients in these pain creams. This report analyzes the available scientific data relating to the ingredients used in compounded topical pain creams and offers recommendations regarding the treatment of patients.
Topics: Health and Medicine » Health Sciences | Health and Medicine » Medical Technologies and Treatments | Health and Medicine » Policy, Reviews and Evaluations
The Social Security Administration (SSA) administers two programs that provide disability benefits: the Social Security Disability Insurance (SSDI) program and the Supplemental Security Income (SSI) program. SSDI provides disability benefits to people (under the full retirement age) who are no longer able to work because of a disabling medical condition. SSI provides income assistance for disabled, blind, and aged people who have limited income and resources regardless of their prior participation in the labor force. Both programs share a common disability determination process administered by SSA and state agencies as well as a common definition of disability for adults: "the inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months." Disabled workers might receive either SSDI benefits or SSI payments, or both, depending on their recent work history and current income and assets. Disabled workers might also receive benefits from other public programs such as workers' compensation, which insures against work-related illness or injuries occurring on the job, but those other programs have their own definitions and eligibility criteria.
Selected Health Conditions and Likelihood of Improvement with Treatment identifies and defines the professionally accepted, standard measurements of outcomes improvement for medical conditions. This report also identifies specific, long-lasting medical conditions for adults in the categories of mental health disorders, cancers, and musculoskeletal disorders. Specifically, these conditions are disabling for a length of time, but typically don't result in permanently disabling limitations; are responsive to treatment; and after a specific length of time of treatment, improve to the point at which the conditions are no longer disabling.
Topics: Health and Medicine » Healthcare and Quality | Health and Medicine » Medical Technologies and Treatments | Health and Medicine » Policy, Reviews and Evaluations
Temporomandibular disorders (TMDs), are a set of more than 30 health disorders associated with both the temporomandibular joints and the muscles and tissues of the jaw. TMDs have a range of causes and often co-occur with a number of overlapping medical conditions, including headaches, fibromyalgia, back pain and irritable bowel syndrome. TMDs can be transient or long-lasting and may be associated with problems that range from an occasional click of the jaw to severe chronic pain involving the entire orofacial region. Everyday activities, including eating and talking, are often difficult for people with TMDs, and many of them suffer with severe chronic pain due to this condition. Common social activities that most people take for granted, such as smiling, laughing, and kissing, can become unbearable. This dysfunction and pain, and its associated suffering, take a terrible toll on affected individuals, their families, and their friends. Individuals with TMDs often feel stigmatized and invalidated in their experiences by their family, friends, and, often, the health care community. Misjudgments and a failure to understand the nature and depths of TMDs can have severe consequences - more pain and more suffering - for individuals, their families and our society.
Temporomandibular Disorders: Priorities for Research and Care calls on a number of stakeholders - across medicine, dentistry, and other fields - to improve the health and well-being of individuals with a TMD. This report addresses the current state of knowledge regarding TMD research, education and training, safety and efficacy of clinical treatments of TMDs, and burden and costs associated with TMDs. The recommendations of Temporomandibular Disorders focus on the actions that many organizations and agencies should take to improve TMD research and care and improve the overall health and well-being of individuals with a TMD.
Topics: Health and Medicine » Health Sciences | Health and Medicine » Healthcare and Quality | Health and Medicine » Policy, Reviews and Evaluations
Social isolation and loneliness are serious yet underappreciated public health risks that affect a significant portion of the older adult population. Approximately one-quarter of community-dwelling Americans aged 65 and older are considered to be socially isolated, and a significant proportion of adults in the United States report feeling lonely. People who are 50 years of age or older are more likely to experience many of the risk factors that can cause or exacerbate social isolation or loneliness, such as living alone, the loss of family or friends, chronic illness, and sensory impairments. Over a life course, social isolation and loneliness may be episodic or chronic, depending upon an individual's circumstances and perceptions.
A substantial body of evidence demonstrates that social isolation presents a major risk for premature mortality, comparable to other risk factors such as high blood pressure, smoking, or obesity. As older adults are particularly high-volume and high-frequency users of the health care system, there is an opportunity for health care professionals to identify, prevent, and mitigate the adverse health impacts of social isolation and loneliness in older adults.
Social Isolation and Loneliness in Older Adults summarizes the evidence base and explores how social isolation and loneliness affect health and quality of life in adults aged 50 and older, particularly among low income, underserved, and vulnerable populations. This report makes recommendations specifically for clinical settings of health care to identify those who suffer the resultant negative health impacts of social isolation and loneliness and target interventions to improve their social conditions. Social Isolation and Loneliness in Older Adults considers clinical tools and methodologies, better education and training for the health care workforce, and dissemination and implementation that will be important for translating research into practice, especially as the evidence base for effective interventions continues to flourish.
Topics: Behavioral and Social Sciences » Aging | Health and Medicine » Aging | Behavioral and Social Sciences » Policy, Reviews and Evaluations
The delivery of high quality and equitable care for both mothers and newborns is complex and requires efforts across many sectors. The United States spends more on childbirth than any other country in the world, yet outcomes are worse than other high-resource countries, and even worse for Black and Native American women. There are a variety of factors that influence childbirth, including social determinants such as income, educational levels, access to care, financing, transportation, structural racism and geographic variability in birth settings. It is important to reevaluate the United States' approach to maternal and newborn care through the lens of these factors across multiple disciplines.
Birth Settings in America: Outcomes, Quality, Access, and Choice reviews and evaluates maternal and newborn care in the United States, the epidemiology of social and clinical risks in pregnancy and childbirth, birth settings research, and access to and choice of birth settings.
Topics: Behavioral and Social Sciences » Children, Youth and Families | Health and Medicine » Women's Health | Health and Medicine » Children's Health
Opioid use and infectious diseases are intertwined epidemics. Despite the fact that the United States is more than two decades into the opioid crisis - the cause of tens of thousands of deaths every year on its own - the health system has not sufficiently addressed the morbidity and mortality of drug use coupled with infectious diseases. This is at least in part due to traditional models of substance use disorder care wherein substance use disorder treatment is delivered independently of other medical care, thereby inhibiting the delivery of comprehensive care. As a result, the United States is experiencing a drastic increase in infectious diseases that spread with drug use.
Opportunities to Improve Opioid Use Disorder and Infectious Disease Services examines current efforts to integrate care and describes barriers, such as inadequate workforce and training; lack of data integration and sharing; and stigma among people who use drugs and have also been diagnosed with an infectious disease. The conclusions and recommendations of this report will help to promote patient-centered, integrated programs to address this dual epidemic.
Topics: Health and Medicine » Public Health and Prevention | Health and Medicine » Infectious Disease | Health and Medicine » Policy, Reviews and Evaluations
A previous Rapid Expert Consultation, dated March 15, provided feedback to the Office of Science and Technology Policy (OSTP) concerning issues of virus survival on surfaces and in the air, and virus/disease incubation period. This publication provides an update and elaboration on these issues, as well as some caveats about the work performed so far and as yet unmet needs.
The National Academies of Sciences, Engineering, and Medicine convened a standing committee of experts to help inform OSTP on critical science and policy issues related to emerging infectious diseases and other public health threats. The standing committee includes members with expertise in emerging infectious diseases, public health, public health preparedness and response, biological sciences, clinical care and crisis standards of care, risk communication, and regulatory issues.
Topics: Health and Medicine » Infectious Disease | Health and Medicine » Global Health | Health and Medicine » Policy, Reviews and Evaluations
Globalization is rapidly changing lives and industries around the world. Drug development, authorization, and regulatory supervision have become international endeavors, with most medicines becoming global commodities. Drug companies utilize global supply chains that often include facilities in countries with inconsistent regulations from those of the United States, perform pivotal trials in multiple countries to support registration submissions in various jurisdictions, and subsequently market their medicines throughout most of the world. These companies operate across borders and require individual national regulators to ensure that drugs authorized for use in their countries are safe and effective, and appropriate for their health care system and their population. This process involves significant resources and often duplicative work. It is important to consider how this process can be improved in order to better allocate resources, time, and efforts to improve public health.
Regulating Medicines in a Globalized World: The Need for Increased Reliance Among Regulators considers the role of mutual recognition and other reliance activities among regulators in contributing to enhancing public health. This report identifies opportunities for leveraging reliance activities more broadly in order to potentially impact public health globally. Key topics in this report include the job of medicines regulators in today's world, what policy makers need to know about today's regulatory environment, stakeholder views of recognition and reliance, as well as removing impediments and facilitating action for greater recognition and reliance among regulatory authorities.
Topics: Health and Medicine » Medical Technologies and Treatments | Health and Medicine » Global Health | Health and Medicine » Policy, Reviews and Evaluations
This rapid expert consultation responds to a request from the Office of Science and Technology Policy (OSTP) concerning questions about necessary data elements, sources of data, gaps in collection, and suggestions for data system design and integration to improve modeling and decision-making for COVID-19.
The National Academies of Sciences, Engineering, and Medicine convened a standing committee of experts to help inform the Office of Science and Technology Policy on critical science and policy issues related to emerging infectious diseases and other public health threats. The standing committee includes members with expertise in emerging infectious diseases, public health, public health preparedness and response, biological sciences, clinical care and crisis standards of care, risk communication, and regulatory issues.
Topics: Health and Medicine » Infectious Disease | Health and Medicine » Global Health | Health and Medicine » Policy, Reviews and Evaluations
This rapid expert consultation responds to a request from the Office of Science and Technology Policy (OSTP) concerning the effectiveness and costs of social distancing measures in contending with COVID-19.
The National Academies of Sciences, Engineering, and Medicine convened a standing committee of experts to help inform OSTP on critical science and policy issues related to emerging infectious diseases and other public health threats. The standing committee includes members with expertise in emerging infectious diseases, public health, public health preparedness and response, biological sciences, clinical care and crisis standards of care, risk communication, and regulatory issues.
Topics: Health and Medicine » Infectious Disease | Health and Medicine » Health Sciences | Health and Medicine » Policy, Reviews and Evaluations
This rapid expert consultation responds to a request from the Office of Science and Technology Policy (OSTP) concerning questions about severe illness in younger adults in Italy infected with the SARS-CoV-2 virus.
The National Academies of Sciences, Engineering, and Medicine convened a standing committee of experts to help inform OSTP on critical science and policy issues related to emerging infectious diseases and other public health threats. The standing committee includes members with expertise in emerging infectious diseases, public health, public health preparedness and response, biological sciences, clinical care and crisis standards of care, risk communication, and regulatory issues.
Topics: Health and Medicine » Infectious Disease | Health and Medicine » Global Health | Health and Medicine » Policy, Reviews and Evaluations
This rapid expert consultation responds to a request from the Office of Science and Technology Policy (OSTP) concerning the survival of the SARS-CoV-2 virus on surfaces and the incubation period between exposure and onset of symptoms.
The National Academies of Sciences, Engineering, and Medicine convened a standing committee of experts to help inform OSTP on critical science and policy issues related to emerging infectious diseases and other public health threats. The standing committee includes members with expertise in emerging infectious diseases, public health, public health preparedness and response, biological sciences, clinical care and crisis standards of care, risk communication, and regulatory issues.
Topics: Health and Medicine » Infectious Disease | Health and Medicine » Global Health | Health and Medicine » Policy, Reviews and Evaluations
Second in a series of publications from the Institute of Medicine's Quality of Health Care in America project
Today's health care providers have more research findings and more technology available to them than ever before. Yet recent reports have raised serious doubts about the quality of health care in America.
Crossing the Quality Chasm makes an urgent call for fundamental change to close the quality gap. This book recommends a sweeping redesign of the American health care system and provides overarching principles for specific direction for policymakers, health care leaders, clinicians, regulators, purchasers, and others. In this comprehensive volume the committee offers:
Analyzing health care organizations as complex systems, Crossing the Quality Chasm also documents the causes of the quality gap, identifies current practices that impede quality care, and explores how systems approaches can be used to implement change.
Topics: Health and Medicine » Healthcare and Quality | Health and Medicine » Public Health and Prevention
Adolescence is a critical growth period in which youth develop essential skills that prepare them for adulthood. Prevention and intervention programs are designed to meet the needs of adolescents who require additional support and promote healthy behaviors and outcomes. To ensure the success of these efforts, it is essential that they include reliably identifiable techniques, strategies, or practices that have been proven effective.
Promoting Positive Adolescent Health Behaviors and Outcomes: Thriving in the 21st Century identifies key program factors that can improve health outcomes related to adolescent behavior and provides evidence-based recommendations toward effective implementation of federal programming initiatives. This study explores normative adolescent development, the current landscape of adolescent risk behavior, core components of effective programs focused on optimal health, and recommendations for research, programs, and policies.
Topics: Behavioral and Social Sciences » Children, Youth and Families | Health and Medicine » Children's Health
Legionnaires' disease, a pneumonia caused by the Legionella bacterium, is the leading cause of reported waterborne disease outbreaks in the United States. Legionella occur naturally in water from many different environmental sources, but grow rapidly in the warm, stagnant conditions that can be found in engineered water systems such as cooling towers, building plumbing, and hot tubs. Humans are primarily exposed to Legionella through inhalation of contaminated aerosols into the respiratory system. Legionnaires' disease can be fatal, with between 3 and 33 percent of Legionella infections leading to death, and studies show the incidence of Legionnaires' disease in the United States increased five-fold from 2000 to 2017.
Management of Legionella in Water Systems reviews the state of science on Legionella contamination of water systems, specifically the ecology and diagnosis. This report explores the process of transmission via water systems, quantification, prevention and control, and policy and training issues that affect the incidence of Legionnaires' disease. It also analyzes existing knowledge gaps and recommends research priorities moving forward.
Topics: Health and Medicine » Public Health and Prevention | Earth Sciences » Water and Hydrology
Each year's poverty figures are anxiously awaited by policymakers, analysts, and the media. Yet questions are increasing about the 30-year-old measure as social and economic conditions change.
In Measuring Poverty a distinguished panel provides policymakers with an up-to-date evaluation of:
The volume explores specific issues underlying the poverty measure, analyzes the likely effects of any changes on poverty rates, and discusses the impact on eligibility for public benefits. In supporting its recommendations the panel provides insightful recognition of the political and social dimensions of this key economic indicator.
Measuring Poverty will be important to government officials, policy analysts, statisticians, economists, researchers, and others involved in virtually all poverty and social welfare issues.
Topics: Industry and Labor » Economics | Health and Medicine » Healthcare and Quality | Behavioral and Social Sciences » Policy, Reviews and Evaluations
In Meeting Psychosocial Needs of Women with Breast Cancer, the National Cancer Policy Board of the Institute of Medicine examines the psychosocial consequences of the cancer experience. The book focuses specifically on breast cancer in women because this group has the largest survivor population (over 2 million) and this disease is the most extensively studied cancer from the standpoint of psychosocial effects. The book characterizes the psychosocial consequences of a diagnosis of breast cancer, describes psychosocial services and how they are delivered, and evaluates their effectiveness. It assesses the status of professional education and training and applied clinical and health services research and proposes policies to improve the quality of care and quality of life for women with breast cancer and their families. Because cancer of the breast is likely a good model for cancer at other sites, recommendations for this cancer should be applicable to the psychosocial care provided generally to individuals with cancer. For breast cancer, and indeed probably for any cancer, the report finds that psychosocial services can provide significant benefits in quality of life and success in coping with serious and life-threatening disease for patients and their families.
Topics: Health and Medicine » Cancer | Health and Medicine » Women's Health
Integrating Social Care into the Delivery of Health Care: Moving Upstream to Improve the Nation's Health was released in September 2019, before the World Health Organization declared COVID-19 a global pandemic in March 2020. Improving social conditions remains critical to improving health outcomes, and integrating social care into health care delivery is more relevant than ever in the context of the pandemic and increased strains placed on the U.S. health care system. The report and its related products ultimately aim to help improve health and health equity, during COVID-19 and beyond.
The consistent and compelling evidence on how social determinants shape health has led to a growing recognition throughout the health care sector that improving health and health equity is likely to depend – at least in part – on mitigating adverse social determinants. This recognition has been bolstered by a shift in the health care sector towards value-based payment, which incentivizes improved health outcomes for persons and populations rather than service delivery alone. The combined result of these changes has been a growing emphasis on health care systems addressing patients' social risk factors and social needs with the aim of improving health outcomes. This may involve health care systems linking individual patients with government and community social services, but important questions need to be answered about when and how health care systems should integrate social care into their practices and what kinds of infrastructure are required to facilitate such activities.
Integrating Social Care into the Delivery of Health Care: Moving Upstream to Improve the Nation's Health examines the potential for integrating services addressing social needs and the social determinants of health into the delivery of health care to achieve better health outcomes. This report assesses approaches to social care integration currently being taken by health care providers and systems, and new or emerging approaches and opportunities; current roles in such integration by different disciplines and organizations, and new or emerging roles and types of providers; and current and emerging efforts to design health care systems to improve the nation's health and reduce health inequities.
Topics: Health and Medicine » Healthcare and Quality | Health and Medicine » Policy, Reviews and Evaluations
Patient-centered, high-quality health care relies on the well-being, health, and safety of health care clinicians. However, alarmingly high rates of clinician burnout in the United States are detrimental to the quality of care being provided, harmful to individuals in the workforce, and costly. It is important to take a systemic approach to address burnout that focuses on the structure, organization, and culture of health care.
Taking Action Against Clinician Burnout: A Systems Approach to Professional Well-Being builds upon two groundbreaking reports from the past twenty years, To Err Is Human: Building a Safer Health System and Crossing the Quality Chasm: A New Health System for the 21st Century, which both called attention to the issues around patient safety and quality of care. This report explores the extent, consequences, and contributing factors of clinician burnout and provides a framework for a systems approach to clinician burnout and professional well-being, a research agenda to advance clinician well-being, and recommendations for the field.
Topics: Health and Medicine » Education and Training | Behavioral and Social Sciences » Human Systems and Technology | Health and Medicine » Policy, Reviews and Evaluations
Children are the foundation of the United States, and supporting them is a key component of building a successful future. However, millions of children face health inequities that compromise their development, well-being, and long-term outcomes, despite substantial scientific evidence about how those adversities contribute to poor health. Advancements in neurobiological and socio-behavioral science show that critical biological systems develop in the prenatal through early childhood periods, and neurobiological development is extremely responsive to environmental influences during these stages. Consequently, social, economic, cultural, and environmental factors significantly affect a child's health ecosystem and ability to thrive throughout adulthood.
Vibrant and Healthy Kids: Aligning Science, Practice, and Policy to Advance Health Equity builds upon and updates research from Communities in Action: Pathways to Health Equity (2017) and From Neurons to Neighborhoods: The Science of Early Childhood Development (2000). This report provides a brief overview of stressors that affect childhood development and health, a framework for applying current brain and development science to the real world, a roadmap for implementing tailored interventions, and recommendations about improving systems to better align with our understanding of the significant impact of health equity.
Topics: Health and Medicine » Children's Health | Health and Medicine » Health Equity | Health and Medicine » Policy, Reviews and Evaluations
The U.S. Social Security Administration (SSA) provides disability benefits through the Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) programs. To receive SSDI or SSI disability benefits, an individual must meet the statutory definition of disability, which is "the inability to engage in any substantial gainful activity [SGA] by reason of any medically determinable physical or mental impairment which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months." SSA uses a five-step sequential process to determine whether an adult applicant meets this definition.
Functional Assessment for Adults with Disabilities examines ways to collect information about an individual's physical and mental (cognitive and noncognitive) functional abilities relevant to work requirements. This report discusses the types of information that support findings of limitations in functional abilities relevant to work requirements, and provides findings and conclusions regarding the collection of information and assessment of functional abilities relevant to work requirements.
Topics: Health and Medicine » Healthcare and Quality | Health and Medicine » Policy, Reviews and Evaluations
Throughout history, perhaps no other disease has generated the level of social, scientific, and political discourse or has had the degree of cultural significance as cancer. A collective in the truest sense of the word, "cancer" is a clustering of different diseases that afflict individuals in different ways. Its burdens are equally broad and diverse, from the physical, financial, and psychological tolls it imposes on individuals to the costs it inflicts upon the nation's clinical care and public health systems, and despite decades of concerted efforts often referred to as the "war on cancer", those costs have only continued to grow over time. The causes and effects of cancer are complex—in part preventable and treatable, but also in part unknown, and perhaps even unknowable.
Guiding Cancer Control defines the key principles, attributes, methods, and tools needed to achieve the goal of implementing an effective national cancer control plan. This report describes the current structure of cancer control from a local to global scale, identifies necessary goals for the system, and formulates the path towards integrated disease control systems and a cancer-free future. This framework is a crucial step in establishing an effective, efficient, and accountable system for controlling cancer and other diseases.
Topics: Health and Medicine » Cancer
Adolescence—beginning with the onset of puberty and ending in the mid-20s—is a critical period of development during which key areas of the brain mature and develop. These changes in brain structure, function, and connectivity mark adolescence as a period of opportunity to discover new vistas, to form relationships with peers and adults, and to explore one's developing identity. It is also a period of resilience that can ameliorate childhood setbacks and set the stage for a thriving trajectory over the life course.
Because adolescents comprise nearly one-fourth of the entire U.S. population, the nation needs policies and practices that will better leverage these developmental opportunities to harness the promise of adolescence—rather than focusing myopically on containing its risks. This report examines the neurobiological and socio-behavioral science of adolescent development and outlines how this knowledge can be applied, both to promote adolescent well-being, resilience, and development, and to rectify structural barriers and inequalities in opportunity, enabling all adolescents to flourish.
Topics: Behavioral and Social Sciences » Children, Youth and Families | Health and Medicine » Children's Health
The opioid crisis in the United States has come about because of excessive use of these drugs for both legal and illicit purposes and unprecedented levels of consequent opioid use disorder (OUD). More than 2 million people in the United States are estimated to have OUD, which is caused by prolonged use of prescription opioids, heroin, or other illicit opioids. OUD is a life-threatening condition associated with a 20-fold greater risk of early death due to overdose, infectious diseases, trauma, and suicide. Mortality related to OUD continues to escalate as this public health crisis gathers momentum across the country, with opioid overdoses killing more than 47,000 people in 2017 in the United States. Efforts to date have made no real headway in stemming this crisis, in large part because tools that already exist—like evidence-based medications—are not being deployed to maximum impact.
To support the dissemination of accurate patient-focused information about treatments for addiction, and to help provide scientific solutions to the current opioid crisis, this report studies the evidence base on medication assisted treatment (MAT) for OUD. It examines available evidence on the range of parameters and circumstances in which MAT can be effectively delivered and identifies additional research needed.
Topics: Health and Medicine » Medical Technologies and Treatments | Health and Medicine » Health Sciences | Health and Medicine » Policy, Reviews and Evaluations
In 2015, building on the advances of the Millennium Development Goals, the United Nations adopted Sustainable Development Goals that include an explicit commitment to achieve universal health coverage by 2030. However, enormous gaps remain between what is achievable in human health and where global health stands today, and progress has been both incomplete and unevenly distributed. In order to meet this goal, a deliberate and comprehensive effort is needed to improve the quality of health care services globally.
Crossing the Global Quality Chasm: Improving Health Care Worldwide focuses on one particular shortfall in health care affecting global populations: defects in the quality of care. This study reviews the available evidence on the quality of care worldwide and makes recommendations to improve health care quality globally while expanding access to preventive and therapeutic services, with a focus in low-resource areas.
Crossing the Global Quality Chasm emphasizes the organization and delivery of safe and effective care at the patient/provider interface. This study explores issues of access to services and commodities, effectiveness, safety, efficiency, and equity. Focusing on front line service delivery that can directly impact health outcomes for individuals and populations, this book will be an essential guide for key stakeholders, governments, donors, health systems, and others involved in health care.
Topics: Health and Medicine » Global Health | Health and Medicine » Healthcare and Quality | Health and Medicine » Policy, Reviews and Evaluations
As women of childbearing age have become heavier, the trade-off between maternal and child health created by variation in gestational weight gain has become more difficult to reconcile. Weight Gain During Pregnancy responds to the need for a reexamination of the 1990 Institute of Medicine guidelines for weight gain during pregnancy. It builds on the conceptual framework that underscored the 1990 weight gain guidelines and addresses the need to update them through a comprehensive review of the literature and independent analyses of existing databases. The book explores relationships between weight gain during pregnancy and a variety of factors (e.g., the mother's weight and height before pregnancy) and places this in the context of the health of the infant and the mother, presenting specific, updated target ranges for weight gain during pregnancy and guidelines for proper measurement. New features of this book include a specific range of recommended gain for obese women.
Weight Gain During Pregnancy is intended to assist practitioners who care for women of childbearing age, policy makers, educators, researchers, and the pregnant women themselves to understand the role of gestational weight gain and to provide them with the tools needed to promote optimal pregnancy outcomes.
Topics: Health and Medicine » Women's Health | Food and Nutrition » Diet and Health
When is it appropriate to return individual research results to participants? The immense interest in this question has been fostered by the growing movement toward greater transparency and participant engagement in the research enterprise. Yet, the risks of returning individual research results—such as results with unknown validity—and the associated burdens on the research enterprise are competing considerations.
Returning Individual Research Results to Participants reviews the current evidence on the benefits, harms, and costs of returning individual research results, while also considering the ethical, social, operational, and regulatory aspects of the practice. This report includes 12 recommendations directed to various stakeholders—investigators, sponsors, research institutions, institutional review boards (IRBs), regulators, and participants—and are designed to help (1) support decision making regarding the return of results on a study-by-study basis, (2) promote high-quality individual research results, (3) foster participant understanding of individual research results, and (4) revise and harmonize current regulations.
Topics: Health and Medicine » Health Sciences | Health and Medicine » Policy, Reviews and Evaluations
Although the general public in the United States assumes children to be generally healthy and thriving, a substantial and growing number of children have at least one chronic health condition. Many of these conditions are associated with disabilities and interfere regularly with children's usual activities, such as play or leisure activities, attending school, and engaging in family or community activities. In their most severe forms, such disorders are serious lifelong threats to children's social, emotional well-being and quality of life, and anticipated adult outcomes such as for employment or independent living. However, pinpointing the prevalence of disability among children in the U.S. is difficult, as conceptual frameworks and definitions of disability vary among federal programs that provide services to this population and national surveys, the two primary sources for prevalence data.
Opportunities for Improving Programs and Services for Children with Disabilities provides a comprehensive analysis of health outcomes for school-aged children with disabilities. This report reviews and assesses programs, services, and supports available to these children and their families. It also describes overarching program, service, and treatment goals; examines outreach efforts and utilization rates; identifies what outcomes are measured and how they are reported; and describes what is known about the effectiveness of these programs and services.
Topics: Health and Medicine » Children's Health | Health and Medicine » Healthcare and Quality | Health and Medicine » Policy, Reviews and Evaluations