Consensus Study Report

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This activity was supported by the National Institutes of Health and the Agency for Healthcare Research and Quality through a contract between the National Academy of Sciences and the National Institutes of Health (Contract Number: HHSN263201800029I, Task Order Number: 75N98022F00012). 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.

International Standard Book Number-13: 978-0-309-72155-4
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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2024. Ending unequal treatment: Strategies to achieve equitable health care and optimal health for all. Washington, DC: National Academies Press. https://doi.org/10.17226/27820.

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COMMITTEE ON UNEQUAL TREATMENT REVISITED: THE CURRENT STATE OF RACIAL AND ETHNIC DISPARITIES IN HEALTH CARE

GEORGES C. BENJAMIN (Cochair), Executive Director, American Public Health Association

JENNIFER (JEN) E. DEVOE (Cochair), John and Sherrie Saultz Professor and Chair, Department of Family Medicine, Oregon Health & Science University

MARGARITA ALEGRIA, Chief of the Disparities Research Unit at Massachusetts General Hospital; Harry G. Lehnert, Jr. and Lucille F. Cyr Lehnert Endowed Chair, Mass General Research Institute; Professor, Departments of Medicine and Psychiatry, Harvard Medical School

JOHN ZAVEN AYANIAN, Alice Hamilton Distinguished University Professor of Medicine and Healthcare Policy; Director, Institute for Healthcare Policy and Innovation, University of Michigan

ELAINE E. BATCHLOR, Chief Executive Officer, MLK Community Hospital and MLK Community Healthcare

DARRELL J. GASKIN, William C. and Nancy F. Richardson Professor in Health Policy; Director, Hopkins Center for Health Disparities Solutions, Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health

VINCENT GUILAMO-RAMOS, Dean and Bessie Baker Distinguished Professor of the Duke University School of Nursing; Vice Chancellor for Nursing Affairs, Duke University; Director, Center for Latino Adolescent and Family Health, Duke University (through October 2023); Executive Director, Institute for Policy Solutions, Johns Hopkins School of Nursing (from November 2024)

VALARIE BLUE BIRD JERNIGAN, Professor of Rural Health and Medicine; Director, Center for Indigenous Health Research and Policy; Oklahoma State University Center for Health Sciences

THOMAS A. LAVEIST, Dean and Weatherhead Presidential Chair in Health Equity, School of Public Health and Tropical Medicine, Tulane University

MONICA E. PEEK, Ellen H. Block Professor of Health Justice, Section of General Internal Medicine; Associate Director, Chicago Center for Diabetes Translation Research, The University of Chicago Pritzker School of Medicine

BRIAN M. RIVERS, Director, Cancer Health Equity Institute; Professor, Community Health and Preventive Medicine, Morehouse School of Medicine

SARA ROSENBAUM, Professor Emerita of Health Law and Policy, Milken Institute School of Public Health, George Washington University

RUTH S. SHIM, Luke & Grace Kim Professor in Cultural Psychiatry, Department of Psychiatry & Behavioral Sciences; Associate Dean of Diverse and Inclusive Education, University of California, Davis School of Medicine

KOSALI I. SIMON, Distinguished Professor and Herman B. Wells Professor; O’Neill Chair and Associate Vice Provost of Health Sciences, O’Neill School of Public and Environmental Affairs, Indiana University Bloomington

PAUL C. TANG, Adjunct Professor, Clinical Excellence Research Center, Stanford University

REGINALD TUCKER-SEELEY, Vice President of Health Equity, ZERO—The End of Prostate Cancer (through November 2023); Principal and Owner, Health Equity Strategies and Solutions (from November 2023)

CONSUELO HOPKINS WILKINS, Senior Vice President for Health Equity and Inclusive Excellence, Professor of Medicine, Vanderbilt University Medical Center

Study Staff

FRANCIS AMANKWAH, Responsible Staff Officer

CHIDINMA CHUKWURAH, Senior Program Assistant

AMIRA DAOUD, Research Associate

ROSE MARIE MARTINEZ, Senior Director, Board on Population Health and Public Health Practice

SHARYL NASS, Senior Director, Board on Health Care Services

Board on Population Health and Public Health Practice Liaison

JOSHUA A. SALOMON, Professor of Health Policy, Department of Health Policy, School of Medicine, Center for Health Policy, Freeman Spogli Institute for International Studies; Director, Prevention Policy Modeling Lab, Stanford University

National Academy of Medicine Fellows

ALICIA COHEN, James C. Puffer, M.D./American Board of Family Medicine NAM Fellow; Core Investigator, VA Providence Healthcare System; Assistant Professor of Family Medicine Alpert Medical School, Brown University; Assistant Professor of Health Services, Policy, and Practice, Brown University School of Public Health

TRACY E. MADSEN, American Board of Emergency Medicine NAM Fellow; Associate Professor, Department of Emergency Medicine, Alpert Medical School of Brown University; Associate Professor, Department of Epidemiology, Brown University School of Public Health; Vice Chair of Research, Brown Emergency Medicine

Editorial Consultant

JOE ALPER

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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 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 ELLEN W. CLAYTON, Vanderbilt University Medical Center, and JOSÉ A. PAGÁN, New York University. They were 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

This Consensus Study Report would not have been possible without the invaluable contributions from many experts and stakeholders dedicated to eliminating health and health care inequities. The committee would like to thank all the speakers and participants who played a role in the virtual public meetings conducted for this study and the many others who provided valued insight. The public meeting speakers, with their affiliations at the time of their presentations to the committee, are listed in Appendix C.

The committee appreciates the sponsors of this study for their generous financial support: Agency for Healthcare Research and Quality and the National Institutes of Health (National Institute on Minority Health and Health Disparities; National Institute of Nursing Research; National Institute of Diabetes and Digestive and Kidney Diseases; National Heart, Lung, and Blood Institute; National Institute on Drug Abuse; National Institute of Neurological Disorders and Stroke; National Institute of Allergy and Infectious Diseases; National Institute of Child Health and Human Development; and National Institute on Aging).

The committee would especially like to thank Dr. Eliseo Perez-Stable, M.D. (National Institute on Minority Health and Health Disparities), Dr. Monica Webb Hooper, Ph.D. (National Institute on Minority Health and Health Disparities), Dr. Robert Otto Valdez, Ph.D., MHSA (Agency for Healthcare Research and Quality), and the persons instrumental in overseeing the initial writing of the study statement of task, including Dr. Gniesha Y. Dinwiddie, Ph.D. (National Institute on Minority Health and Health Disparities), Dr. Richard Benson, M.D., Ph.D. (National Institute of Neurological Disorders and Stroke), Dr. Tessie October, M.D., M.P.H.

(National Institute of Child Health and Human Development), Dr. Jenna Norton, Ph.D., M.P.H. (National Institute of Diabetes and Digestive and Kidney Diseases), Dr. Elizabeth Tarlov, Ph.D., R.N. (National Institute of Nursing Research), and Dr. Xinzhi Zhang, M.D., Ph.D., FACE (Agency for Healthcare Research and Quality).

The committee also thanks the NAM Kellogg Health of the Public Fund for funding the consensus report’s dissemination. The committee gives special thanks to Kevin Fiscella and Mechelle Sanders at University of Rochester, Daniel Dawes at Meharry Medical College, and Josemiguel (José) Rodríguez at the George Washington University Law School for their contributions to the commissioned papers to inform the committee’s work. The committee is grateful for the many staff within the National Academies who provided support at various times throughout this project.

Contents

ACRONYMS AND ABBREVIATIONS

PREFACE

SUMMARY

1 UNEQUAL TREATMENT: 20 YEARS AFTER

Impact of the 2003 Unequal Treatment Report

The U.S. Health Care System Continues to Perform Poorly

The Economic Burden of Persistent Inequities

Study Charge

Study Approach

Looking Back and Looking Forward

Structure of the Report

References

2 THE HEALTH CARE SYSTEM WITHIN A LARGER SOCIETAL SYSTEM

Structural Determinants of Health

Oppression and Structural Racism

Social Determinants of Health (SDOH)

Non–Health Care Sector Partnerships and Community

Societal Commitment to Equity

Chapter Summary

References

3 EVIDENCE OF RACIAL AND ETHNIC INEQUITIES IN HEALTH CARE

Inequities in Access to and Use of Health Care

Summary of Evidence of Racial and Ethnic Inequities in Selected Health Conditions

Impact of Place: States and Territories

Intersectionality

Chapter Summary

References

4 HEALTH CARE LAWS AND PAYMENT POLICIES

Health Care Laws

The Affordable Care Act (ACA)

Key ACA Provisions

Impact of Policies and Legal Interventions

Health Care Equity and the Courts

Chapter Summary

References

5 HEALTH CARE SERVICE DELIVERY

Health Care Delivery Models

The Health Care Workforce

The Health Care Environment

Individual Care-Seeking Behavior and Medical Mistrust

Health Literacy

Health Information Technology (HIT)

Chapter Summary

References

6 COMMUNITY-CENTERED AND COMMUNITY-ENGAGED CARE

Community Environments Influence Health and Health Care

Community Partnerships

Promising Interventions

Approaches to Achieve Indigenous Health Care Equity

Chapter Summary

References

7 DISCOVERY AND EVIDENCE GENERATION

Advancing Health Equity Research

Historical and Current Health Equity Research Funding

The Research Workforce

Health Equity Research Data

Health Equity Research Infrastructure

Moving Health Equity Research from Observations to Interventions

High-Priority Areas for Future Research

Chapter Summary

References

8 ACCOUNTABILITY

Accountability Structures and Processes

Health Care Laws and Payment Policies

Health Care Delivery System

Community Centeredness and Engagement

Data and Research Infrastructure

Chapter Summary

References

9 OVERARCHING CONCLUSIONS AND RECOMMENDATIONS

Overarching Conclusions

Goals and Recommended Implementation Actions

References

APPENDIXES

A Glossary

B Examples of National Academies Consensus Reports Relevant to the Goal of Achieving Equitable Health Care and Optimal Health for All

C Workshop Series Speakers

D Biographical Sketches of Committee Members

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Boxes, Figures, and Tables

BOXES

1-1 Summary of Recommendations from the 2003 Unequal Treatment Report

1-2 Statement of Task

1-3 Health, Health Care, and Health Care System

1-4 Inequities Versus Disparities; Inequitable Versus Unequal Treatment

1-5 Key Terms

2-1 Health Care Financing and Insurance Design

2-2 Life-Course Perspectives on Health Inequities

2-3 Select Recommendations from the 2019 National Academies Report

5-1 Racially Concordant Care

6-1 Examples of Community-Based Participatory Research (CBPR) Studies That Successfully Addressed Racial and Ethnic Health Care Inequities

6-2 Integrating Community Members into Health Care Settings

6-3 Selected International Approaches to Achieve Indigenous Health Care Equity

7-1 NIH Research Funding Methodology Using NIH RePORTER

7-2 Recommendations from the 2022 National Academies Report Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups

7-3 High-Priority Areas for Future Research

8-1 Select Recent Executive Orders to Advance Health Equity

8-2 Select Draft Bills Related to Health Care Equity

9-1 Recommendations to Ensure That Collection and Reporting of Data Are Representative and Accurate from the 2023 National Academies Report Federal Policy to Advance Racial, Ethnic, And Tribal Health Equity

9-2 Recommendations for Integrating Social Care into Health Care Delivery from the 2019 National Academies Report Integrating Social Care into the Delivery of Health Care: Moving Upstream to Improve the Nation’s Health

FIGURES

S-1 The system in which health care is organized, financed, delivered, and held accountable to achieve equitable health care and optimal health for all

1-1 Uninsurance by race and ethnicity, 2008–2022

1-2 Life expectancy in the United States by race and ethnicity, 2008–2022

1-3 The system in which health care is organized, financed, delivered, and held accountable to achieve equitable health care and optimal health for all

2-1 The key external societal forces

3-1 Age-adjusted death rate for the 10 leading causes of death in the United States in 2021

3-2 Prevalence of diabetes, 2021

3-3 Age-Adjusted COVID-19 Cases (per 100,000) in the United States by Race and Ethnicity

3-4 Prevalence of ESRD by race and ethnicity, 2001–2021

3-5 Incidence of HIV by race and ethnicity, 2008–2021

3-6 Unintentional mortality by race and ethnicity, 2000–2020

3-7 Maternal mortality rates by race and ethnicity, 2018–2021

3-8 Infant mortality rates by race and ethnicity, 2000–2020

4-1 Proportion of nonelderly population covered by Medicaid, by race/ethnicity, 2021

5-1 The composition of interprofessional primary care teams

5-2 NIMHD’s research framework

7-1 NIH Health Equity Funding (Direct Cost), Fiscal Years 2004–2023

7-2 NIMHD Health Equity Funding (Direct Cost), Fiscal Years 2004–2023

7-3 A health equity implementation framework

8-1 Key places in the health care system where accountability is needed and the major actors accountable for accomplishing health care equity goals

TABLES

1-1 The committee’s assessment on the progress of implementation of the 2003 report recommendations

4-1 Summary of Selected Key Provisions of the ACA and Their Implications for Racial and Ethnic Health Care Inequities

7-1 NIH Institutes/Centers: Direct Costs for Health Equity Related Projects vs. All Topic Projects (2004–2023)

7-2 Examples of Health Equity Research Training Programs by Career Stage

8-1 An Example of a Potential Accountability Framework, Recommended for Medicare and Medicaid Innovation

8-2 Examples of HHS agencies’ published plans, policies, and frameworks to advance health care equity

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Acronyms and Abbreviations

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Preface

Achieving equitable health care and optimal health for all has been a national goal for many years. However, this goal has been elusive. Twenty years ago, Congress tasked the Institute of Medicine (IOM)¹ to evaluate the quality of health care received by racially and ethnically minoritized populations in the United States and study why health care disparities existed. This landmark IOM study found that racial and ethnic disparities in health care occurred in the context of broader historical and contemporary social and economic inequalities rooted in the persistent racial and ethnic discrimination in many sectors of U.S. life, including medicine. In this 2003 Unequal Treatment report, the IOM made several recommendations to address these disparities, including the need for additional research to expand the evidence base for further action.

In 2023, the Agency for Healthcare Research and Quality and the National Institutes of Health asked the National Academies of Sciences, Engineering, and Medicine to convene a consensus committee to update the Unequal Treatment report and examine the current state of racial and ethnic health care disparities. Our committee accepted the task of identifying the major drivers of health care inequities and assessing whether and what progress has been made to close gaps over the past 20 years. In preparing this report, the committee reflected on major changes in the

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¹ As of March 2016, the Health and Medicine Division of the National Academies of Sciences, Engineering, and Medicine continues the consensus studies and convening activities carried out by the Institute of Medicine (IOM). The IOM name is used to refer to reports issued prior to July 2015.

health care system since 2003. We reviewed and updated the evidence to better understand how health care inequities have changed over time. We then examined the factors that have reduced inequities and the remaining barriers that have slowed down, inhibited, or reversed progress toward the elimination of health care inequities. We also reviewed the rapidly evolving legal landscape, regulatory environment, and societal factors that influence how the United States organizes, finances, and delivers health care. Health care exists within this larger legal, political, and societal context, with profound implications on the ability of the nation to adequately address health care inequities and achieve optimal health for all.

The negative repercussions of inequities go beyond individual’s health and specific medical conditions, causing profound differences in life expectancy and national economic consequences. One analysis showed that Black populations had over 80 million potential years of life lost compared to their White counterparts. The economic burden of health and health care inequities leads to excess health care expenditures, lost labor market productivity, and increased costs to avoid excess premature death. The economic burden of racial and ethnic health inequities in 2018 was $421.1 billion for minoritized population (American Indian and Alaska Native, Asian, Black, Latino, and Native Hawaiian and Other Pacific Islander populations) and $608.7 billion for White populations. Therefore, addressing health and health care inequities could produce significant economic benefits for the nation.

Since the original Unequal Treatment report, scientific evidence has advanced such that we know more about effective and actionable practice, policy, and systems solutions. This report summarizes the state of the evidence about health care inequities, what we know works or does not work to address them, and where there are evidence and/or implementation gaps. This report concludes with recommendations for how to translate the best science into action toward closing persistent and long-standing health care inequity gaps.

Proactive efforts are needed to scale new evidence-based interventions and disseminate emerging evidence that demonstrates the potential to reduce inequities. The nation also needs to increase investments in social, economic, policy, and health systems’ research focused on reducing health care inequities. Achieving and sustaining health care equity is a complex, long-term activity that requires many inter-related strategies and tactics. Thus, this committee includes recommendations that a focused group of actors should implement over a short period and those that may take longer and require broad societal, financial, and political support. This report has recommendations for intervening at the local, regional, and national levels. Many of them will require additional resources or redistributing resources to where they are needed to better align with the science and evidence. Intentional strategies to understand and reduce inequitable outcomes,

access, and experiences across communities of different races and ethnicities, income groups, genders, and neighborhoods are needed. With this in mind, the committee sought to recommend leveraging existing resources or systems as platforms to improve and scale interventions.

The United States likes to see itself as the world’s standard bearer of excellence in health care. Yet when compared to other industrialized nations, we are not the exemplars we believe we are. We rank behind many other high-income countries in how health care systems perform on measures of quality, access, efficiency, equity, outcomes, and life expectancy. We have some of the worst inequities in health outcomes based on race, ethnicity, gender, socioeconomic status, sexual orientation, and even zip code. These outcomes persist despite health care expenditures that are twice that of the next closest high-income nation. This report focuses on the persistent inequities that occur in our nation and a way forward, if we can find the will to address them. If we do so, the evidence is clear that it is not a zero-sum game, and everyone benefits. We can and must do better.

Georges C. Benjamin, M.D.
Jennifer E. DeVoe, M.D., D.Phil.
Committee Co-Chairs
Committee on Unequal Treatment Revisited

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