Launching Lifelong Health by Improving Health Care for Children, Youth, and Families (2024)
Chapter: Front Matter
Consensus Study Report
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This activity was supported by contracts between the National Academy of Sciences and the American Board of Pediatrics (18452-81001), the Health Resources and Services Administration and the Agency for Healthcare Research and Quality (75R60221D00002/75R60222F34004), the Robert Wood Foundation (79272), and The David and Lucile Packard Foundation (2022-73646), and was supported by the American Academy of Pediatrics, Academic Pediatric Association, Children’s Hospital Association, and Silicon Valley Community Foundation. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project.
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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2024. Launching Lifelong Health by Improving Health Care for Children, Youth, and Families. Washington, DC: National Academies Press. https://doi.org/10.17226/27835.
The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental institution to advise the nation on issues related to science and technology. Members are elected by their peers for outstanding contributions to research. Dr. Marcia McNutt is president.
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COMMITTEE ON IMPROVING THE HEALTH AND WELLBEING OF CHILDREN AND YOUTH THROUGH HEALTH CARE SYSTEM TRANSFORMATION
TINA L. CHENG (Co-Chair), Cincinnati Children’s Hospital Medical Center; University of Cincinnati College of Medicine
JAMES M. PERRIN (Co-Chair), Harvard Medical School; Massachusetts General Hospital for Children
LOUIS P. APPEL, People’s Community Clinic
CHRISTINA BETHELL, Johns Hopkins Bloomberg School of Public Health
ASHLEIGH F. BOWMAN, University of South Alabama, College of Nursing; USA Health Children’s & Women’s Hospital
NATHAN T. CHOMILO, Minnesota Department of Human Services; University of Minnesota Medical School
ASHLEIGH D. COSER, Cherokee Nation
ALISON E. CUELLAR, George Mason University; National Bureau of Economic Research
HALA H. DURRAH, Independent Patient Family Engagement Consultant
CAROLE R. GRESENZ, Georgetown University
KELLY J. KELLEHER, Nationwide Children’s Hospital; The Ohio State University
WILLIAM MARTINEZ, University of California, San Francisco; Zuckerberg San Francisco General Hospital
PHILIP O. OZUAH, Montefiore Einstein Medicine; Albert Einstein College of Medicine
SARAH A. STODDARD, University of Michigan School of Nursing and School of Public Health
LEQUISHA S. TURNER, University of Nebraska Medical Center Munroe Meyer Institute
JENNIFER R. WALTON, University of Miami Miller School of Medicine
Study Staff
JULIE ANNE SCHUCK, Study Director
ABIGAIL ALLEN, Associate Program Officer (from August 2023)
SUNIA YOUNG, Senior Program Assistant (until February 2024)
EMMA MOORE, Senior Program Assistant (from January 2024)
SHAAKIRA PARKER, Associate Program Officer (until August 2023)
EMILY P. BACKES, Deputy Board Director, Board on Child, Youth, and Families
FOPEFOLUWA ATANDA, Intern (Summer 2023)
ALLISSA MASSE, Intern (Summer 2023)
National Academy of Medicine Fellow in Global Health Leadership
KAI CHEONG, Hong Kong Children’s Hospital, University of Hong Kong
BOARD ON CHILDREN, YOUTH, AND FAMILIES
JONATHAN TODRES (Chair), Georgia State University College of Law
TAMMY CHANG, University of Michigan
DEBRA M. FURR-HOLDEN, New York University
ANDREA GONZALEZ, McMaster University
NIA HEARD-GARRIS, Northwestern University Feinberg School of Medicine
NANCY E. HILL, Harvard University
CHARLES J. HOMER, Economic Mobility Pathways
MARGARET KUKLINSKI, University of Washington
MICHAEL C. LU, University of California, Berkeley, School of Public Health
STEPHEN W. PATRICK, Vanderbilt University Medical Center
JENNY S. RADESKY, University of Michigan Medical School
STEPHEN T. RUSSELL, The University of Texas at Austin
JANE WALDFOGEL, Columbia University School of Social Work
JOANNA L. WILLIAMS, Rutgers University
Staff
NATACHA BLAIN, Senior Board Director
EMILY P. BACKES, Deputy Board Director
BOARD ON HEALTH CARE SERVICES
DONALD M. BERWICK (Chair), Harvard Medical School
ANDREW B. BINDMAN, Kaiser Foundation Health Plan, Inc., and Hospitals
PAUL CHUNG, Kaiser Permanente Bernard J. Tyson School of Medicine
MARTHA DAVIGLUS, University of Illinois Chicago
LEE A. FLEISHER, University of Pennsylvania Perelman School of Medicine
COLLEEN GALAMBOS, University of Wisconsin–Milwaukee
EMILY GEE, Inclusive Growth at American Progress
GARY L. GOTTLIEB, Harvard Medical School
ELMER E. HUERTA, George Washington University Cancer Center
LAUREN S. HUGHES, Farley Health Policy Center
SHARON K. INOUYE, Harvard Medical School
MARK S. JOHNSON, Howard University
JOHN R. LUMPKIN, BlueCross BlueShield of North Carolina Foundation
FAITH MITCHELL, Urban Institute’s Center on Nonprofits and Philanthropy and Health Policy Center
JULIE ROBISON, University of Connecticut
LINDA SCOTT, University of Wisconsin–Madison
HARDEEP SINGH, Baylor College of Medicine, Houston
HEMI TEWARSON, National Academy for State Health Policy
KEEGAN D. WARREN, Texas A&M University
LAURIE ZEPHYRIN, Commonwealth Fund
MICHAEL ZUBKOFF, Dartmouth University
Staff
SHARYL J. NASS, Director
Reviewers
This Consensus Study Report was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the National Academies of Sciences, Engineering, and Medicine (National Academies) in making each published report as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process.
We thank the following individuals for their review of this report:
Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations of this report, nor did they see the final draft before its release. The review of this report was overseen by ROSEMARY A. CHALK, Independent Consultant, and SUSAN J. CURRY, Department of Health Management and Policy, The University of Iowa, emeritus. They are responsible for making certain that an independent examination of this report was carried out in accordance with the standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the authoring committee and the National Academies.
Acknowledgments
The committee thanks the sponsors of this study for their support: the American Board of Pediatrics, the Health Resources and Services Administration and the Agency for Healthcare Research and Quality, the Robert Wood Johnson Foundation, The David & Lucile Packard Foundation, the American Academy of Pediatrics, the Academic Pediatric Association, the Children’s Hospital Association, and Pediatrics Supporting Parents through the Silicon Valley Community Foundation.
This report would not have been possible without the contributions of many people. Special thanks go to the members of the committee, who dedicated extensive time, expertise, knowledge, and energy to the preparing of the report. The committee also thanks the members of the staff of the National Academies for their significant contributions to the report: Julie Schuck, Abigail Allen, Emma Moore, Shaakira Parker, and Sunia Young, as well as Kai Cheong, National Academy of Medicine Fellow, and summer interns Fopefoluwa Atanda and Allissa Masse.
In addition to its own research and deliberations, the committee received input from numerous outside sources, whose perspectives and experiences were fundamental to the committee’s effort. We thank Mary Applegate, Ohio Department of Medicaid; Prameela Boorada, Mental Health America, Youth Mental Health Leadership Council; Renée Boynton-Jarrett, Boston University, Vital Village Community Engage ment Network; Jacey Cooper, California Department of Health Care Services; Sneha Dave, Generation Patient; Doug Eby, Southcentral Foundation; David Erickson, Federal Reserve Bank of New York; Sherry Glied, New York University; Christopher Greeley, Baylor College of Medicine, Texas Children’s Hospital; Neal
Halfon, University of California, Los Angeles; Dana Hargunani, Oregon Health Authority; Kay Johnson, Johnson Group Consulting, Inc.; Nat Kendall-Taylor, FrameWorks Institute; Stephen Kingsmore, Rady Children’s Hospital; Elizabeth Koschmann, University of Michigan, TRAILS to Wellness; Daniel Kraft, NextMed Health; Bruce Lesley, First Focus on Children; Cindy Mann, Manatt Health; Kenny McDonald, The Columbus Partnership; Eneida Mendonça, Cincinnati Children’s Hospital; Tamela Milan-Alexander, EverThrive; Nikki Montgomery, Family Voices; Carley Riley, Cincinnati Children’s Hospital, All Children Thrive; Tim Robinson, Nationwide Children’s; Sara Rosenbaum, The George Washington University; Edward Schor, health care system consultant; Jim Taylor, Google; Sara Watson, Watson Strategies, LLC; and Paul Wise, Stanford University. The committee also gathered information through commissioned papers. We thank Irene Papanicolas, Brown University, London School of Economics, Harvard University, and Mark Stabile, INSEAD, University of Toronto, for their papers.
The committee is also grateful to National Academies staff Pamella Atayi and Javed Khan for their administrative and financial assistance on this project. From the Office of Reports and Communication of the Division of Behavioral and Social Sciences and Education (DBASSE), Kirsten Sampson Snyder, Douglas Sprunger, and Kimberly Halperin shepherded the report through the review and the production process and assisted with its communication and dissemination. Hannah Fuller of the Office of News and Public Information and Sandra McDermin of the Office of the Congressional and Government Affairs were instrumental in the release and promotion of the report. The committee also thanks Clair Woolley of the National Academies Press and Bea Porter of DBASSE for their assistance with the production of the final report. We also thank Health and Medicine Division staff member Marc Meisnere and consultants Eli Cahan and Megan Snair for their writing and editing contributions; editors Rona Briere and Allie Boman provided skillful editing of the report manuscript.
Throughout the project, Natacha Blain and Emily Backes, director and deputy director of the Board on Children, Youth, and Families, and Carlotta Arthur and Patti Simon, executive director and associate executive director of DBASSE, provided valuable oversight and guidance.
SOCIETAL GAINS FROM INVESTING IN CHILD HEALTH
Invest in Child Health for Savings and Benefits to the Nation
Public Health Investment Benefits Child Health
Investment in Child Health Benefits Children Now
DECLINING INVESTMENT IN CHILD WELLBEING DESPITE DEMONSTRATED BENEFIT
LACK OF ATTENTION TO THE UNIQUE NEEDS OF CHILDREN
Pediatric Health Care and Pediatric Clinicians
Pediatric Drug Development and Diagnostic Testing
Health Care Innovations and Pediatrics
VISION FOR IMPROVING THE HEALTH AND WELLBEING OF CHILDREN AND YOUTH
Principle 1: Employ a Life Course Perspective
Principle 2: Partner with Families and Communities, Which Are Central to Child Health and Wellbeing
Principle 3: Prioritize and Drive Equitable Outcomes through Resources and Accountability
Principle 4: Make It Sustainable Over Time
2 Science and Frameworks to Guide Health Care Transformation
LIFE COURSE AND MULTIGENERATIONAL PERSPECTIVE
CRITICAL PERIODS IN DEVELOPMENT: OPPORTUNITIES FOR HEALTH CARE TRANSFORMATION
Preconception and Prenatal Women’s Health
Early Childhood and Family Health
SCIENTIFIC BASES FOR HEALTH CARE TRANSFORMATION: DEVELOPMENTAL ORIGINS OF HEALTH AND DISEASE
SCIENTIFIC AND TECHNOLOGICAL ADVANCES
Genetics, Epigenetics, and Gene Therapy
Cancer Identification and Treatment
Stem Cells, Organoids, and Regenerative Medicine
Advances in Vaccines and Monoclonal Antibody Development
Artificial Intelligence and Digital Health
Precision Population and Public Health
Implications of Scientific and Technological Advancement for Transformation
SOCIAL AND ENVIRONMENTAL INFLUENCES ON CHILD HEALTH AT COMMUNITY AND INDIVIDUAL LEVELS
Structural Inequities and Racism
SOCIETAL INFLUENCES ON CHILD HEALTH AT THE POPULATION LEVEL
HEALTH CARE TRANSFORMATION TOWARD WHOLE CHILD AND FAMILY HEALTH
CHILD- AND FAMILY-CENTERED HEALTH CARE
COMMON CHALLENGES TO COMMUNITY-CENTERED CARE
Trustworthiness of Health Care Institutions
Historical and Contemporary Instances of Unethical Research and Medical Practices
Access to Health Care and System Fragmentation
Individual-Level Disempowerment: Literacy, Language, and Cultural Congruence
Advancing Health Equity with Communities
Building Trust through Engagement of Children, Families, and Communities
COMPREHENSIVE WORKFORCE TRAINING
Recognize Activities Related to Patient and Family Experience
Providing Support and Care through Youth-Led Services
Leveraging Anchor Institutions
4 Children in the United States: Demographics, Health, and Wellbeing
CURRENT STATE OF CHILD AND ADOLESCENT HEALTH
Chronic Conditions and Disabilities
Leading Causes of Mortality and Injury
FAMILY, CAREGIVER, AND COMMUNITY HEALTH
Relational and Social Health Risks
5 Health Care for Children and Youth
HEALTH CARE AND CRITICAL PERIODS OF DEVELOPMENT
Preconception and Prenatal Health
Early Childhood and Family Health
Special Population Health Care Providers
INNOVATION AND CHANGE IN PEDIATRIC PRIMARY CARE
MENTAL AND BEHAVIORAL HEALTH CARE PROVIDERS AND SETTINGS
Barriers to Pediatric Behavioral and Mental Health Services
Disparities in Pediatric Mental and Behavioral Health
Integrating Mental and Behavioral Health Care with Primary Care
HOSPITAL-BASED AND SPECIALIZED CARE
Subspecialty and Surgical Care
PEDIATRIC HEALTH CARE WORKFORCE
Shortage and Maldistribution of Pediatric Health Care Professionals
Workforce Wellbeing and Burnout
6 Insurance and Other Financing for Clinical Services
Importance of Health Insurance for Children
Overview of Children’s Health Insurance
PUBLIC HEALTH INSURANCE FOR CHILDREN
Children’s Health Insurance Program
Insurance Coverage for Parents
Direct Clinical Services Support
KEY CHALLENGES OF HEALTH INSURANCE
Racial and Geographic Variation
Immigration Status and Health Insurance
Continuity of Health Insurance Coverage for Children
Variations in Medicaid and CHIP Policies in U.S. Territories
Access to Providers in Networks
Access to Mental Health Providers
NEW PROVIDER PAYMENT MODELS TO TRANSFORM INSURANCE PAYMENT FOR CHILDREN’S HEALTH CARE
7 Investment in Child Health through Population- and Community-Level Primary Prevention
Important Public Health Programs for Children
Government Public Health Departments
FEDERAL PROGRAMS FOR MEETING COMMUNITY NEEDS
Maternal and Early Child Health
Mental and Behavioral Health Services
EXPANDING RESOURCES TO ADVANCE COMMUNITY-LEVEL HEALTH PROMOTION AND DISEASE PREVENTION
Community Benefit and Reinvestment Activities
8 Opportunities for Health Promotion and Disease Prevention in Schools
CONNECTIONS BETWEEN EDUCATION AND HEALTH
THE ROLE OF SCHOOLS IN CHILDREN’S HEALTH CARE
Facilitating Public Insurance Enrollment
Improving Access to Nutrition and Combatting Child Hunger
Health Promotion and Screening
Managing Asthma and Other Chronic Conditions
DELIVERING CARE: SCHOOL-BASED HEALTH CENTERS
Effects of SBHCs on Health Outcomes
DELIVERING CARE: MENTAL HEALTH SERVICES
Universal Mental Health Programs and Policies
Federal Support for School-Based Mental Health Services
SCHOOL-BASED HEALTH CARE WORKFORCE
FACILITATING AND FINANCING SCHOOL-BASED HEALTH SERVICES
9 Measurement and Accountability
CURRENT MEASUREMENT AND ACCOUNTABILITY STRATEGIES
Inadequacies of Current Measurement and Accountability Systems
Other Efforts to Take Stock of Measurement Assets and Gaps
MEASUREMENT AND ACCOUNTABILITY STRATEGY FOR CHILD HEALTH CARE SYSTEM TRANSFORMATION
Priority Area 1: Population Accountability Measures
Priority Area 2: Expedited Applied Research
Priority Area 3: Shared Measures for Improved Interoperability
Priority Area 4: Small Set of Priority Outcomes
Priority Area 5: Incentives for Accountability
Priority Area 6: Community Engagement
Priority Area 7: Data Dashboard
10 Improving the Health and Wellbeing of Children, Youth, Families, Communities, and the Nation
LIFE COURSE PERSPECTIVE: THE CRITICAL IMPORTANCE OF CHILD HEALTH
VISION FOR IMPROVING HEALTH AND WELLBEING OF CHILDREN AND YOUTH
Goal 3: Strengthen Community-Level Health Promotion and Disease Prevention
Goal 5: Implement Measurement and Accountability to Ensure Equitable Achievement of These Goals
Appendix A Biosketches of Committee Members and Staff
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Boxes, Figures, and Tables
BOXES
3-1 California Reducing Disparities Project
3-2 Illustrative Example: Building Community Trust—Renee Boynton-Jarrett
3-3 Illustrative Example: Community Engagement—Tamela Milan-Alexander
3-4 Southcentral Foundation’s Nuka System of Care
3-5 Healthy Neighborhoods Healthy Families
5-1 Opportunities for Centering Relational Health in Pediatric Care
5-2 Models Supporting Early Child Wellbeing in Pediatric Primary Care
5-3 Medical–Legal Partnerships
7-1 Essential Public Health Services
8-1 CDC Healthy Schools Initiative
8-2 Transforming Research into Action to Improve the Lives of Students (TRAILS)
9-1 Key Performance Measurement Topics Used by Federal Child Health Programs
9-2 Key National Sources of Data on Children’s Health by Sponsor
9-3 Focusing Measures and Ensuring Health Care System Engagement: The Ohio Department of Medicaid
9-4 The Engagement in Action Framework
FIGURES
1-1 Children unite for a healthy world
1-3 Societal gains in investing in children
1-4 Share of federal budget outlays spent on children and other items, selected years, 1965–2023
1-6 Present and future pediatric care models
2-1 Model of children’s health and its influence across the life course
2-2 The three-generation continuum
2-3 Multigenerational transmission of health effects from environmental exposures
2-4 A life course view of health risk
2-5 Human world, protected by vaccines
2-6 Socioecological model of development across the life course
2-7 Climate change and anxiety
3-2 The Care We Create: A community mural
3-3 Family perspectives on system attributes that promote thriving
3-4 Childhood hope and sense of pride
3-6 Meaningful community engagement in health and health care programs and policies
4-1 Growth in the number of U.S. children (under age 18) by immigrant status, 1994–2022
4-2 Child supplemental poverty rates by race and Hispanic origin, 2009–2022
5-2 The composition of a multidisciplinary primary care team
6-1 Mean expenditure per person by age group, United States, 1996–2021
6-2 Mean expenditure per person with expense by age group, United States, 1996–2021
6-3 Mean expenditure per event by age group, United States, 1996–2021
6-4 Percentage of children under age 19 with selected coverage types, 2021
6-6 Average annual premiums for covered workers, single and family coverage, by plan type, 2021
6-7 Status of state action on Medicaid expansion decision
6-9 Health care coverage of children by race and ethnicity, 2022
6-10 Percentage of children underinsured by demographic characteristics
7-1 Connecting people, achieving health equity
7-2 Public health and health care system integration
7-3 Amount of public health expenditures by funding source
7-4 Average raw public health expenditures for state public health agencies, 2010–2021
7-5 Federal expenditures on children by category and major programs, 2021, in billions of dollars
7-7 Project LAUNCH (Linking Actions for Unmet Needs in Children’s Health)
8-1 Characteristics of school-based health centers (SBHCs)
9-1 Key elements of a measurement and accountability plan for a transformed child health care system
9-3 2023 Centers for Medicare & Medicaid Services (CMS) national quality strategy framework
TABLES
1-1 Societal Gains from Investing in Child Health
2-1 Principles of Whole Child and Family Health Care
5-1 Quality-of-Care Indicators for Children’s Health Care in the United States
5-2 Children’s Health Care Utilization
5-3 Types of Providers for Pediatric Health Care
6-1 Major Federal Investments Addressing Children and Youth Health and Wellbeing
9-1 Guiding Principles and the Characteristics of Accountability Measurement Systems
9-2 Overview of Existing Measurement and Accountability Strategies and Opportunities for Improvement
Preface
The true measure of a nation’s standing is how well it attends to its children—their health and safety, their material security, their education and socialization, and their sense of being loved, valued, and included in the families and societies into which they are born.
—United Nations Children’s Fund
The foundation and promise of lifelong health start in childhood. Children are the workforce of tomorrow and the human capital that will drive our nation forward. That future, however, is threatened by the precarious state of child health and wellbeing in America today. The United States significantly lags in child health status among the world’s industrialized countries. Our nation’s enduring health disparities deprive too many children of the care, support, and opportunity they need to thrive.
If we fail to address these circumstances, our nation faces grave economic, social, and health-related risks. A strong economy relies on a highly skilled workforce, but the business community increasingly warns that the United States is losing ground. No fewer than three branches of the military failed to meet their recruitment goals last year, with 77% of young people ineligible for reasons of health. The growing population of older adults will rely on an undersized youth cohort and a declining U.S. birth rate.
Good evidence supports national and local strategies for changing the trajectories for young Americans. There are many well-studied innovations on health care for children and youth that, if brought to scale, can strengthen young peoples’ health, wellbeing, and development. The path forward accelerates the move to team care in communities, inclusion of
mental and behavioral health and community health workers, and major improvements in the science and organization of pediatric subspecialty care. Greater inclusion of families in all aspects of their health care—using their voice and experience to improve care—builds trust, capacity, and solutions. Schools can increase their efforts in prevention and providing health services that keep children active, alert, and engaged in their education. Many critical public health efforts—from nutrition, to surveillance and prevention, to delivery to particularly vulnerable groups, to ensuring the health of the nation’s children and parents—merit focus, collaboration, and more support.
It will take consistent, sustained, and permanent national leadership and strong state and local engagement to institute and maintain the changes needed. Many previous efforts have led to important progress in programs for children’s health, but the lack of a sustained vision and focus has limited those gains. Attention to children’s health needs in times of national crisis often comes too little and too late. The nation needs to pay more, and more wisely, for change and to support the future health care system that can be built from the strong evidence this report offers. Critically, public insurance (mainly Medicaid and the Children’s Health Insurance Program) support health care for half of U.S. children. Reform of these programs, along with the investment needed to prevent discrimination based on insurance provider, can form the basis of a high-quality universal health care system for all children who lack other insurance. Ensuring the full implementation of key Medicaid benefits, especially the Early and Periodic Screening, Diagnosis, and Treatment statute, will strengthen that progress. Payment reform in general, both commercial and public, can greatly enhance the transformation of care and help bring to scale the many innovations available in pediatric care and wisely implement the many scientific advances in prevention, diagnosis, and treatment of childhood conditions.
This project benefited from the support of a diverse group of public and private sponsors. We very much appreciate their support and the questions they provided us early in the study. Our committee included an array of members with varied experiences, backgrounds, and disciplines, who engaged actively in this work. Their talents helped us build a vigorous and well-rounded approach to a complex and important set of questions.
Nelson Mandela noted that “our children are our greatest treasure.” However, America’s young lack voice in decision making and are often an afterthought in policy and innovation. Changing this situation requires “the wisdom, the will, and the wallet,” as co-chair Cheng puts it. This report relays the wisdom: the committee documents the substantial knowledge base regarding child health and wellbeing, identifying essential levers for change, and underscoring the essential role of families and communities in creating necessary progress. The enduring oversight structure and investment
strategy recommended in this report are a blueprint for ensuring the health and wellbeing of America’s most valuable asset: all our children. Investing in their future is the key to a healthy community, a stable and prosperous nation, and the next generation of adults that realizes its full human potential.
Tina L. Cheng and James M. Perrin, Co-Chairs
Committee on Improving the Health and Wellbeing of Children and Youth through Health Care System Transformation
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Acronyms and Abbreviations
| AACAP | American Academy of Child and Adolescent Psychiatry |
| AAFP | American Academy of Family Physicians |
| AANP | American Association of Nurse Practitioners |
| AAP | American Academy of Pediatrics |
| ACA | Patient Protection and Affordable Care Act |
| ACF | Administration for Children and Families |
| ACGME | Accreditation Council for Graduate Medical Education |
| ACO | accountable care organization |
| ACOG | American College of Obstetricians and Gynecologists |
| ACP | American College of Physicians |
| ACS | American Community Survey |
| ADDM | Autism and Developmental Disabilities Monitoring (Network) |
| ADHD | attention deficit hyperactivity disorder |
| AHA | American Hospital Association |
| AHEAD | Accelerating All-Payer Health Equity and Development |
| AHRQ | Agency for Healthcare Research and Quality |
| AI | artificial intelligence |
| AI/AN | American Indian/Alaska Native |
| ASPE | Office of the Assistant Secretary for Planning and Evaluation |
| ASQ | Ages and States Questionnaire |
| ASTHO | Association of State and Tribal Health Officials |
| BLS | Bureau of Labor Statistics |
| BMI | body mass index |
| BPCA | Best Pharmaceuticals for Children Act |
| BSCA | Bipartisan Safer Communities Act |
| CACFP | Child and Adult Care Food Program |
| CAHMI | Child and Adolescent Health Measurement Initiative |
| CAP | child and adolescent psychiatrist |
| CARES | Coronavirus Aid, Relief, and Economic Security |
| CAY | Center for the Advancement of Youth |
| CBO | Congressional Budget Office |
| CBT | cognitive-behavioral therapy |
| CCBHC | certified community behavioral health clinic |
| CCDF | Child Care and Development Fund |
| CDC | U.S. Centers for Disease Control and Prevention |
| CHCS | Center for Health Care Strategies |
| CHIP | Children’s Health Insurance Program |
| CHW | community health worker |
| CLS | child life specialist |
| CMMI | Center for Medicare and Medicaid Innovation |
| CMS | Centers for Medicare & Medicaid Services |
| CNMI | Commonwealth of the Northern Mariana Islands |
| CNS | Clinical Nurse Specialist |
| COI | Child Opportunity Index |
| CPEHN | California Pan-Ethnic Health Network |
| CPSTF | Community Preventive Services Task Force |
| CRA | Community Reinvestment Act |
| CSSP | Center for the Study of Social Policy |
| CTC | Child Tax Credit |
| CW | Child Welfare (Administration for Children and Families) |
| CYBHI | Children and Youth Behavioral Initiative |
| DBP | developmental-behavioral pediatrician |
| DoD | Department of Defense |
| DSH | Disproportionate Share Hospital (program) |
| DULCE | Developmental Understanding and Legal Collaboration |
| EBT | electronic benefit transfer |
| ECHO | (Project) Extension for Community Healthcare Outcomes |
| ED | U.S. Department of Education |
| EHR | electronic health record |
| EI | Early Intervention (U.S. Department of Education) |
| EIP | economic impact payment |
| EnAct! | Engagement in Action (framework) |
| EPA | U.S. Environmental Protection Agency |
| EPSDT | Early and Periodic Screening, Diagnosis, and Treatment |
| ERS | Economic Research Service |
| FCFS | Federal Interagency Forum on Child and Family Statistics |
| FDA | Food and Drug Administration |
| FMAP | Federal Medical Assistance Percentage |
| FNS | Food and Nutrition Service |
| FPL | federal poverty level |
| FQHC | federally qualified health center |
| FY | fiscal year |
| GAO | Government Accountability Office |
| GDP | gross domestic product |
| GDP2 | Global Developmental Potential |
| GHWIC | Good Health and Wellness in Indian Country |
| GRPA | Government Performance and Results Act |
| HDHP/SO | high-deductible health plan/savings option |
| HEDIS | Healthcare Effectiveness Data and Information Set (managed care organization measures; National Committee for Quality Assurance) |
| HHS | U.S. Department of Health and Human Services |
| HMG | Help Me Grow |
| HMO | health maintenance organization |
| HNHF | Healthy Neighborhoods Healthy Families |
| HomVEE | Home Visiting Evidence of Effectiveness (project) |
| HRSA | Health Resources and Services Administration |
| HV | Maternal, Infant, and Early Childhood Home Visiting (Health Resources and Services Administration) |
| IDEA | Individuals with Disabilities Education Act |
| IECMH | Infant Early Childhood Mental Health |
| IECMHC | Infant and Early Childhood Mental Health Consultation |
| IEP | individualized education program |
| IFSP | individualized family service plan |
| IHS | Indian Health Service |
| IIHS | Insurance Institute for Highway Safety |
| IMPACT | Integrated Model for Parents and Children Together |
| InCK | Integrated Care for Kids (model) |
| IOM | Institute of Medicine |
| IPFCC | Institute for Patient- and Family-Centered Care |
| IRS | Internal Revenue Service |
| KIDs | Kids Inpatient Database |
| LAUNCH | Linking Actions for Unmet Needs in Children’s Health |
| MACPAC | Medicaid and CHIP Payment and Access Commission |
| MCD | Medicaid and CHIP (Centers for Medicare & Medicaid Services) |
| MCH MRN | Maternal and Child Health Measurement Research Network |
| MCHB | Maternal and Child Health Bureau |
| MCO | managed care organization |
| MFP | medical-financial partnership |
| MIECHV | Maternal, Infant, and Early Child Home Visiting (program) |
| MLP | medical–legal partnership |
| MLR | medical loss ratio |
| NACHC | National Association of Community Health Centers |
| NAM | National Academy of Medicine |
| NASN | National Association of School Nurses |
| NASW | National Association of Social Workers |
| NCBDDD | National Center on Birth Defects and Developmental Disabilities |
| NCCPA | National Commission on the Certification of Physician Assistants |
| NCHWA | National Center for Health Workforce Analysis |
| NCTSN | National Child Traumatic Stress Network |
| NCUIH | National Council of Urban Indian Health |
| NHGRI | National Human Genome Research Institute |
| NHIS | National Health Interview Survey |
| NHOPI | Native Hawaiian or Other Pacific Islander |
| NHQDR | National Healthcare Quality and Disparities Report |
| NICHD | National Institute of Child Health and Human Development |
| NICWA | National Indian Child Welfare Association |
| NIH | National Institutes of Health |
| NP | nurse practitioner |
| NPC-QIC | National Pediatric Cardiology for Everyone Improvement Collaborative |
| NRC | National Research Council |
| NRHA | National Rural Health Association |
| NSCH | National Survey of Children’s Health |
| NSLP | National School Lunch Program |
| ODM | Ohio Department of Medicaid |
| ODPHP | Office of Disease Prevention and Health Promotion |
| OECD | Organisation for Economic Co-operation and Development |
| OMB | Office of Management and Budget |
| ONC | Office of the National Coordinator for Health Information Technology |
| OSG | Office of the U.S. Surgeon General |
| PA | physician assistant |
| PARENT | Parent-focused Redesign for Encounters, Newborns to Toddlers |
| PEDS | Parent’s Evaluation of Developmental Status |
| PHHS | Preventive Health and Health Services |
| PNCB | Pediatric Nursing Certification Board |
| POS | point of service |
| PPO | preferred provider organization |
| PTSD | post-traumatic stress disorder |
| R3 | Ready! Resilient! Rising! |
| REACH | Racial and Ethnic Approaches to Community Health |
| RMTS | Random Moment Time Study |
| RN | registered nurse |
| ROI | return on investment |
| RUC | Relative Value Scale Update Committee |
| SAMHSA | Substance Abuse and Mental Health Services Administration |
| SBHA | School-Based Health Alliance |
| SBHC | school-based health center |
| SBP | School Breakfast Program |
| SCF | Southcentral Foundation |
| SDOH | social determinants of health |
| SEEK | Safe Environment for Every Kid |
| SFSP | Summer Food Service Program |
| SNAP | Supplemental Nutrition Assistance Program |
| SPP | Solutions for Pediatric Psychology |
| SPS | Solutions for Patient Safety |
| SSA | U.S. Social Security Administration |
| SSI | Supplemental Security Income |
| SWYK | Survey of Well-Being of Young Children |
| TANF | Temporary Assistance for Needy Families |
| TFICC | Transnational Forum on Integrated Community Care |
| TRAILS | Transforming Research into Action to Improve the Lives of Students |
| TV | Title V (Health Resources and Services Administration) |
| UNICEF | United Nations Children’s Fund |
| USDA | U.S. Department of Agriculture |
| USVI | U.S. Virgin Islands |
| VA | U.S. Department of Veterans Affairs |
| VFC | Vaccines for Children |
| VIP | Video Interaction Project |
| WHO | World Health Organization |
| WIC | Special Supplemental Nutrition Program for Women, Infants, and Children |
| WSCC | Whole School, Whole Community, Whole Child |
| WVP | Well-Visit Planner |
Key Terms
| Adolescent | An individual in the transitional period between childhood and adulthood, which has been viewed as spanning ages 10–19 (World Health Organization [WHO], n.d.a) or 10–24 (Sawyer et al., 2018). The term “youth” is used interchangeably. |
| Adult | An individual who has reached full physical growth and maturity (Arain et al., 2013; Arnett, 2000; Sawyer et al., 2018; WHO, n.d.a). A legal adult is seen as age 18 or older. Older adults are viewed to be age 65 or older. |
| Adverse Childhood Experiences | Potentially traumatic events that occur in childhood, including (among other forms) physical, emotional, or sexual abuse; neglect; and household dysfunction. (Centers for Disease Control and Prevention [CDC], 2019b). |
| Child | An individual in a period of rapid growth and development from birth to adulthood, encompassing infancy, childhood, and adolescence (Food and Drug Administration [FDA], 2022; Williams et al., 2012). |
| Child Health | This term is used broadly to include preconception, maternal, prenatal, child, adolescent, family, and community health and wellbeing. A multigenerational and life course perspective considers that all health and developmental stages build on each other and are inextricably linked. |
| Children and Youth with Special Health Care Needs | Individuals with existing or heightened vulnerability to chronic physical, developmental, behavioral, or emotional conditions. These children need health care and associated services beyond the typical requirements for children in general (McPherson et al., 1998). |
| Co-Creation and/or Co-Design | Active collaboration among stakeholders in designing solutions to a prespecified problem. Co-creation and co-design emphasize involving diverse stakeholders in all parts of a process, beginning with determining and defining the problem through the final stages of a project. These concepts promote citizen participation when formulating or addressing specific concerns (Vargas et al., 2022). |
| Community | Any configuration of individuals, families, and groups whose values, characteristics, interests, geography, and/or social relations unite them in some way (National Academies of Sciences, Engineering, and Medicine [National Academies], 2017a). |
| Community Engagement | The process of working collaboratively with and through groups of people affiliated by geographic proximity, special interest, or similar situations to address issues affecting the wellbeing of those people (CDC, 1997). |
| Community Health Centers | Community-based and patient-directed organizations that provide affordable, accessible, high-quality primary health care services to individuals and families, including people experiencing homelessness, agricultural workers, residents of public housing, and veterans (Health Resources and Services Administration [HRSA], 2023e). |
| Community Health Worker | A frontline public health worker who is a trusted member or has a particularly good understanding of the community served. Serves as a liaison between health and social services and the community to facilitate access to services and improve the quality and cultural competence of service delivery (American Public Health Association, n.d.; CDC, 1997). |
| Cross-Sector Collaboration | A process in which various community organizations come together to focus their expertise and resources collectively on a complex issue of importance to a community they serve. The fields of community development and public health are interconnected, and the partnership models they use jointly can inform how sectors come together to foster health and wellbeing (Towe et al., 2016). For child health, other sectors of particular import include child welfare, education, juvenile justice, and social services. |
| Family | A group of two or more persons related by birth, marriage, or adoption who live together; all such related persons are considered members of one family. For purposes of this report, “family” is extended to include “functional family,” which encompasses caregivers and support systems for children, as well as “cultural family,” which determines beliefs and reasons for behavior; these extended concepts of family can inform the negotiation of treatment and care (HRSA, 2023d; Medalie & Cole-Kelly, 2002). |
| Family-Centered (Community-Centered) | A partnership approach to health care decision making between the family (or community) and health care provider (Kuo et al., 2012). |
| Federally Qualified Health Centers | Federally funded nonprofit health centers or clinics that serve medically underserved areas and populations. Provide primary care services regardless of ability to pay.1 |
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1 https://www.healthcare.gov/glossary/federally-qualified-health-center-fqhc/
| Flourishing | A state of positive wellbeing. Typically focuses on parents’ or other adults’ reports of observable attributes, such as whether children show interest and curiosity in learning new things, are able to regulate emotions and behaviors in challenging situations, and can focus and persist to achieve goals (Bethell, Gombojav, & Whitaker 2019). |
| Health | Encompasses the extent to which individuals are able or enabled to (a) develop and realize their potential; (b) satisfy their needs; and (c) develop the capacities that allow them to interact successfully with their biological, physical, and social environments (Institute of Medicine [IOM], 2004). |
| Health Disparities | Differences among specific population groups in the attainment of full health potential. Can be measured by differences in incidence, prevalence, mortality, burden of disease, and other adverse health conditions (National Academies, 2017a). |
| Health Equity | The state in which everyone is able to achieve their optimal health and wellbeing, with no systemic disparities in health outcomes between groups with different levels of underlying social advantage or disadvantage (Braveman et al., 2018; National Academies, 2017a, 2021b). |
| Historically Marginalized Populations | Groups and communities that have been poorly served by the health care system, have faced systemic oppression and denial of access to quality care, and have experienced disproportionate impacts from discrimination (National Academies, 2017a, 2020b). |
| Institutional Racism | Policies and practices within institutions that, intentionally or not, produce outcomes that chronically favor White individuals and put individuals from historically marginalized racial and ethnic groups at a disadvantage (National Academies, 2023b). |
| Life Course Theory | The life course health and development framework addresses the developmental origins of health across life stages, the role of biological and behavioral plasticity in facilitating different levels of adaptation, and how mismatches between biological propensity and environmental context interact to produce breakdowns in health, known as disease (Halfon et al., 2018). |
| Maternal Health | Health during pregnancy, childbirth, and the postnatal period (WHO, n.d.b). |
| Medical Home | An approach to delivering comprehensive and high-quality primary care that goes beyond a physical location. Emphasizes accessibility, family-centered care, continuity, comprehensiveness, compassion, and cultural effectiveness, as well as coordination and partnership among clinicians, families, and community resources (American Academy of Pediatrics [AAP], 2022). High-performing medical homes are practices that provide comprehensive well-child visits and preventive services based on Bright Futures and Early and Periodic Screening, Diagnosis, and Treatment standards, emphasizing care coordination tailored to children’s and families’ needs (InCK Marks, 2018). |
| Positive Childhood Experiences | Includes positive interpersonal experiences with family, friends, and in school or the community. Current theory identifies seven types (e.g., felt safe and protected by an adult in their home, felt sense of belonging in school; Bethell et al., 2019). |
| Public Health | The science and pursuit of promoting and protecting the health of all people in a community. Dimensions include a focus on primary prevention, population health, and diverse public and private collaborators (IOM, 2012c). |
| Relational Health | The capacity to develop and maintain safe, stable, nurturing relationships with others; relational health is an important predictor of wellness across the lifespan (Garner & Yogman, 2021a). |
| School-Based Health Centers | Located on or near primary and secondary school campuses; provide primary and preventive medical care, behavioral health services, diagnostic care such as routine screenings, and/or dental preventive care (Medicaid and CHIP Payment and Access Commission, 2018b). |
| Social Determinants of Health | The conditions in the environments in which people live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks (National Academies, 2017a; Office of Disease Prevention and Health Promotion, n.d.a). |
| Structural Racism | The totality of ways in which a society fosters racial and ethnic inequity and subjugation through mutually reinforcing systems, including housing, education, employment, earnings, benefits, credit, media, health care, and the criminal legal system. These structural factors organize the distribution of power and resources (i.e., the social determinants of health) differentially among racial, ethnic, and socioeconomic groups, perpetuating racial and ethnic health inequities. The key difference between institutional and structural racism is that structural racism happens across institutions, while institutional racism happens within institutions. “Systemic racism” is a synonym (National Academies, 2024b). |
| Team-Based Care | Two or more health care professionals working collaboratively with patients and their caregivers to accomplish shared goals. Potentially involving a wide range of team members in various settings, a health care team strives to meet patient needs and preferences by actively engaging patients and families as full participants in their care, while encouraging all health care professionals to function to the full extent of their education, certification, and experience. Members may include physicians, nurses, pharmacists, social workers, community health workers, and others identified as persons necessary to help achieve shared goals (Smith et al., 2020). |
| Telemedicine and Telehealth | “Telemedicine” refers to the use of telecommunications technologies to facilitate the provision of various medical, diagnostic, and treatment services, typically by physicians. Encompasses activities such as conducting diagnostic tests, closely monitoring a patient’s progress post-treatment or therapy, and facilitating access to specialists not located in the same geographic area as the patient. “Telehealth” is similar but encompasses a broader range of remote health care services extending beyond the doctor–patient relationship; frequently involves services provided by nurses, pharmacists, or social workers, supporting patient health education, social assistance, medication adherence, and addressing health concerns for patients and their caregivers (Federal Communications Commission, n.d.). |
| Whole Child and Family Health Care | A child, family, community-centered, integrated approach to health care that focuses on health promotion and disease prevention early in the life course and addresses family health and the social conditions in which children and families live (National Academies, 2023a). |
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Abstract
Launching lifelong health for the country’s children has never been more important. It is time to reverse troubling trends in the health and wellbeing of child, adolescent, and young adult populations. This report documents increases in the incidence of chronic diseases, growing concerns with children’s mental, emotional, and behavioral health, and significant disparities among population subgroups. Rising rates of mortality and disability among youth and working-age Americans also reflect the long-term consequences of not providing the care that children need.
Even with expanded insurance coverage, many children lack access to adequate preventive care. Furthermore, models of health care payment, usually relying on fee-for-service structures or value-based arrangements focused on lowering expenditures for high-cost adult patients, do not provide child health clinicians the flexibility or incentives to work with families and partner with communities to address their health and developmental needs.
In response to rising concerns about the adequacy of pediatric health care to meet evolving challenges and societal needs, the Committee on Improving the Health and Wellbeing of Children and Youth through Health Care System Transformation was assembled to identify key levers of change for improving the health care system for children and youth. The focus of this report and its recommendations is on the health care sector, defined broadly to include clinical and community care, along with public health investments in child and family health and school-based efforts in health care. This report is not the first assessment of opportunities for transformative pediatric care; it builds on an ever-expanding body of research on health care for children, families, and communities.
Robust science on the importance of early life experiences, relationship-based care, genetics and epigenetics, and developmental origins of health and disease demonstrates potential for enhancing society through a focus on prevention and health promotion. A substantial research base shows that efforts to promote positive childhood experiences that provide safe, stable, and nurturing relationships and environments in early life can reduce adult physical, mental, social, and relational health problems.
Health care systems in the future will need to engage in broader, cross-sector collaborations that build on community strengths and address family and community health needs. With the proper infrastructure and financing, many recent, well-evidenced advances in health care can continue to support change and the progress needed in the next 10 years. These advances include better and earlier diagnosis and treatment, innovations in team-based primary and subspecialty care, integration of mental and behavioral health services with care, effective strategies for child and family engagement in care and co-design of care, and improved screening and coordination of care with other community services. The health care financing system for children, with support from Medicaid and the Children’s Health Insurance Program, insures almost 95% of U.S. children, but current incentives inhibit critical innovations. Key strategies exist to reform payment and transform care.
The committee identified five implementation goals to set the country on a path toward improved health care and better health and wellbeing of children and youth. Each goal includes a set of recommendations aimed at critical federal, state, and community-level actions.
- Elevate the importance of child and adolescent health for the nation through continuous public focus on children and youth.
- Finance health care systems for all children, emphasizing prevention and health promotion.
- Strengthen community-level health promotion and disease prevention.
- Ensure co-creation and co-design of programs and structures with youth, family, and community voices and leadership.
- Implement measurement and accountability to ensure equitable achievement of these goals.
The report’s recommendations call for sustained and coordinated leadership at the federal level to maintain focus on children and youth and their health care and better assess the child health impact of public policies. The report identifies four key levers of change: (1) health care financing reform with incentives for preventive care; (2) increased investment in public health efforts, school-based health care, and activities designed to address community health needs; (3) inclusion of children and families and especially
historically marginalized communities in all aspects of program and policy improvement; and (4) development of measurement strategies for population health outcomes. (See the Summary and Chapter 10 for fuller description and discussion of the recommendations.)
Investing in the health and wellbeing of children and youth not only helps young people and their families now but has longer-term social and economic benefits for the next generation of productive and healthy adults and healthy children. At a population level, child health is the foundation of a thriving nation.
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