9

Overarching Conclusions and Recommendations

The U.S. health care system underperforms compared to other high-income nations despite the enormous fiscal investment (OECD, 2023). The poor performance of the nation’s health care system affects everyone, but this underperformance has a disproportionate impact on racially and ethnically minoritized populations who experience persistent inequities in health care, as highlighted in Unequal Treatment (IOM, 2003). Twenty years after Unequal Treatment, this report reviews the status of health care inequities for racially and ethnically minoritized populations, identifies the major drivers of those inequities, identifies gaps in the evidence base, provides insight into successful and unsuccessful interventions, and proposes strategies to close these gaps. As discussed throughout this report, this committee uses “inequities” instead of “disparities” except when citing a publication that explicitly measured disparities. In addition, the committee is aware that the terms “health” and “health care” are different but inextricably linked. Health is a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity. Health care refers to the services provided to individuals, families, and communities for the purpose of promoting, maintaining, or restoring health across settings of care. The committee acknowledges that improvements in health care would require simultaneous improvements to the factors that influence health, as shown in the committee’s conceptual framework. This report frequently uses the terms “health care” and “health” together, as interventions to reduce racial and ethnic health care inequities also commonly advance health equity. Furthermore, this report uses “health

care system” (activities related to the delivery of care across the continuum of care) to describe the U.S. health care system as a whole and also individual health care systems when appropriate.

A substantial and growing body of research documents the health care inequities that minoritized individuals, families, and communities continue to experience within the health care system. This research also increases awareness and understanding of how social conditions shape health care inequities and deepens understanding of how discrimination manifests itself and drives health care inequities. Health and health care inequities are inextricably linked, making them impossible to completely separate from each other. For example, it is possible to have equally poor health outcomes from a system that delivers equal but inadequate health care. It is also possible to have a system that delivers equal treatment of the highest quality that achieves suboptimal health outcomes because of non-health factors that influence individual or population health. The goal should be to have a health care system delivering equitable health care within a society that gives everyone the opportunity to achieve optimal health.

This report’s findings show that although the United States has made some progress in addressing inequities in health care,¹ movement has been slow, uneven, inconsistent, and, at times, regressive among certain populations and across disease conditions. Some progress has occurred in developing systems to monitor health and health care equity and increasing research to document inequities and metrics to measure and understand them. But, despite better understanding these inequities, the nation has failed to translate this knowledge into sustainable actions that close longstanding gaps in the delivery of equitable health care to minoritized populations to achieve equitable health care and optimal health for all. The Affordable Care Act (ACA) provided mechanisms for expanding access to health insurance coverage; however, erosion of access to care, particularly to primary care, seems a regression due to structural limitations of the law and implementation failures.

The committee’s conceptual framework (see Figure 1-1) serves as a unifying basis for the committee’s approach to the report organization and recommendations for action. Because the health care system exists within the larger society, the conceptual framework highlights five key societal external forces, each representing a significant influence on equitable health

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¹ As noted in Chapter 1, the committee is aware that health (a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity) and health care (the services provided to individuals, families, and communities for the purpose of promoting, maintaining, or restoring health across settings of care) are different but inextricably linked.

care: structural determinants of health; oppression and structural racism; social determinants of health; non–health care sector partnerships; and societal commitment to equity. These key external societal forces act individually, intersect with one another, and constantly interact with the domains in the health care system to shape health care organization, financing, delivery, and accountability to policies to achieve or not achieve equitable health care and optimal health for all. The framework recognizes the need to move from a “sick care system” to a health care system.

Within the health care system, the committee identified four key intersecting domains—each with subdomains—that emerge as critical mechanisms to reinforce or mitigate health care inequities: health care laws and payment policies, health care services delivery, discovery and evidence generation, and accountability. All four of these domains intersect within local communities where care ultimately happens. Engaging communities in the conceptualization, strategic guidance, and implementation of efforts to achieve equitable health care and optimal health for all people is an essential component of the community partnership with the health care system. Based on the findings documented in the prior chapters of this report, the committee makes these overarching conclusions and recommendations for action:

OVERARCHING CONCLUSIONS

1. The nation has made little progress in advancing health care equity. Racial and ethnic inequity remains a fundamental flaw of the U.S. health care system.
2. Racial and ethnic health care inequities are driven by a complex interaction between health care and key external societal forces that serve as enablers or barriers to achieving equitable health care and optimal health. Achieving optimal health for all requires substantive changes in the larger societal forces that influence health and health care.
3. Over the past 20 years the nation has experienced profound changes in laws and policies, with implications for health care access, coverage, affordability, workforce, and the drivers of health care equity. Some changes in laws and policies have advanced health care equity significantly, while other changes have slowed down progress toward advancing this important goal.
4. A diverse health and science workforce, representative of the communities that it serves, is essential to health care equity. The nation has made little progress addressing this goal. Recent court decisions concerning diversity, equity and inclusion are likely to further limit progress in achieving a diverse workforce.

5. Comprehensive and sustained efforts to improve health care across the continuum of care, from primary to quaternary care, including mental health care, have often been the most beneficial to minoritized populations facing the deepest inequities. In contrast, time-limited and/or incremental reforms often fall short of improving health care equity and may trigger unintended consequences that widen inequity gaps.
6. Emerging approaches to achieving health care equity show promise and are poised for increased investment, implementation, and expansion so that progress is translated into long-term improvement in outcomes. This requires leadership and definitive action to implement sustainable policies and programs that maintain and continue to advance progress in an ever-evolving health care system.
7. Continual research and evaluation are needed to measure and drive improvements in health and health care equity. Research findings need to be widely disseminated, and successful interventions need to be rapidly implemented and translated into practice and policy.
8. Accountability is essential to advancing health and health care equity. Inadequate enforcement of current laws and policies that promote equitable health care to advance health equity has hindered progress. Enhancing systems of accountability throughout the health care system, with a focus on achieving equity and optimal health, are required.

GOALS AND RECOMMENDED IMPLEMENTATION ACTIONS

The study statement of task specifies that “the committee will consider ways to scale and spread effective interventions to reduce racial and ethnic disparities in health care and make recommendations to advance health equity” and “apply its expert judgment in order to develop recommendations with a focus on advancing health equity.” As the report has emphasized throughout the chapters, “health equity” and “health care equity” are different but inextricably linked. Eliminating inequities in health care delivery can positively affect health equity; however, changes to health care systems and clinical care alone are insufficient to advance racial and ethnic health equity. A society with a perfect health care system could still have significant health inequities. Thus, improvements in health care will require simultaneous improvements to the factors that influence health, as shown in the committee’s conceptual framework.

The committee’s recommended goals and implementation actions are not presented in order of priority or scale of impact. Instead, they are presented in

a logical sequence of steps, recognizing that transformative change does not follow a linear process but is most often iterative, bidirectional and circular. The recommendations are also presented to provide a narrative on what could be done immediately within the current legal and political environment and how momentum can build from one recommendation to the next. First (and continuously), accurate and timely data are needed to describe the health and health care inequities, to inform the development and implementation of effective and sustainable interventions. Next, health care systems need to be equipped with the information and the capabilities to make sustainable change and iteratively measure progress in partnership with a research enterprise that continues to discover and rigorously evaluate promising new interventions that can be widely implemented. This ongoing progress needs to be supported by systems of accountability and enforcement. Finally, delivery and financing mechanisms need as their central goals to ensure access to equitable health care and to achieve optimal health for all.

Goal 1: Generate Accurate and Timely Data on Inequities

Only what is measured can get done, and timely and accurate data are essential for progress. However, the health care system is lax and uneven in gathering, correlating, interpreting, and using race and ethnicity data such that many decisions are not data driven or informed by data that could lead to applying and expanding successful interventions to eliminate inequities. In addition, efforts are underway nationwide to inhibit data collection and reporting by race and ethnicity. Without data, it will be impossible to know if health care inequities have been eliminated or health equity has been advanced. An intensive effort should be made to continue the collection, evaluation, and dissemination of health and health care equity data to ensure systemwide accountability for eliminating inequities in health care and advancing health equity. To achieve this goal, the committee recommends the following actions:

Implementation Actions:

1-1. The U.S. Department of Health and Human Services (HHS) should fully implement Executive Order 13985 to build accountability for equity through data collection and reporting for the agencies and programs under HHS oversight.

1. Revise the standard clinician and hospital billing forms, using Office of Management and Budget standards, to routinely capture patient race and ethnicity across all payers.
2. Institute a process for routinely collecting race and ethnicity data on the health care workforce.

1-2. The Office of Management and Budget should set an administration-wide requirement for the routine collection of race, ethnicity, tribal affiliation, and language data by all agencies overseeing federal health care and research programs and should regularly monitor and report on agency compliance.

Goal 2: Equip Health Care Systems and Expand Effective and Sustainable Interventions

The health care system has failed to adopt at scale many of the known solutions for improving health care equity. As discussed in Chapter 4, the ACA set in motion long-term changes in how health care is organized and delivered, spurring greater emphasis on integrating health care with services aimed at addressing health-related social needs. However, structural limitation and legal challenges to the law have stalled broad implementation for many of its provisions.

In addition, as discussed in Chapter 5, linguistically appropriate health care services do not meet the needs of the nation’s diverse patient population, partly because the existing health care workforce is not representative of that population. Emerging health care delivery models show promise to advance equity and need to be scaled for broad implementation. Chapters 5, 6, and 7 emphasize the efficacy of multilevel interventions that involve the community. No widely agreed-upon systematic standards and procedures exist for acceptable performance measures to achieve equitable health care and optimal health for all, regardless of race and ethnicity and socioeconomic background, as discussed in Chapter 8. The variation in performance measures for health care equity impedes efforts to hold health care systems, organizations, and clinicians accountable for their performance in promoting equitable health care outcomes.

In addition, health equity should become an expectation of the entire health care delivery system and expectations of high-quality care should include equity as a core value at the organizational level. To ensure that this goal is achieved across the entire nation, federal leadership is essential to create consistency across the health care system.

Just as health care professionals and clinical decision-making tools are subject to biases that contribute to health care inequities, so are the algorithms and emerging technologies used in the application processes and acceptance of individuals, families, and communities into social programs.

Therefore, to achieve this goal, the committee recommends the following actions:

Implementation Actions:

2-1. Congress should increase funding for effective health care delivery programs shown to improve access and quality and reduce health care inequities.

2-2. The U.S. Department of Health and Human Services agencies overseeing federal health care programs should set clear, enforceable standards applicable to grantees that design and administer programs that will

1. Ensure the provision of person-centered, whole person care that prioritizes prevention and health promotion rather than solely focusing on the treatment of advanced diseases.
2. Foster strong clinician–patient relationships, shared decision-making, and improved communications.
3. Ensure that measures of quality and performance reflect the sociocultural populations served rather than being generalized to the population as a whole.
4. Emphasize the use of interprofessional teams that include community health workers and other multidisciplinary health care workers who possess the knowledge, competencies and skills needed to tailor services to meet patients’ clinical and social needs.
5. Promote equitable access to technologies that reduce barriers to effective care and are designed to eliminate systemic bias in clinical decision making.

2-3. The Centers for Medicare & Medicaid Services should expand the number of Section 1115 demonstrations designed to address adverse social determinants of health by combining clinical care with investments in health-related social needs as an element of care delivery. Health equity should be incorporated explicitly as a goal of program design, payment structure, and evaluation.

2-4. The Department of Health and Human Services should lead an agencywide effort to eliminate structural inequities in the design and application of standards, payment systems, and clinical diagnostic tools and algorithms that perpetuate health inequities and to ensure that tools and algorithms used to administer health and social service programs are accurate, unbiased, and reliable.

Goal 3: Invest in Research and Evidence Generation to Better Identify and Widely Implement Interventions that Eliminate Health Care Inequities

As discussed in Chapter 7, important shifts in the funding and conduct of health equity research have occurred in the 20 years since the Unequal Treatment report. However, progress has been slow and incremental due to historically underfunded health equity research, exclusion of racially and ethnically minoritized groups from the research workforce, persistent limitations in data on race and ethnicity, and inadequate infrastructure and partnerships to rigorously conduct the necessary types and scale of health equity research and translate findings into policies and practice. Given the magnitude of the problem and years of life lost due to inequities, the paucity of research resources devoted to studying successful “treatments” and implementation strategies for scaling up effective interventions is profound. Furthermore, the majority of studies in the health equity literature are observational, with fewer studies specifically testing multilevel and structural interventions. New research approaches, including community-based participatory research and studies conducted in primary care settings, show promise to advance interventions to improve health and health care equity, but few implementation studies or comparative effectiveness studies have occurred to facilitate adoption of the most effective interventions. To achieve this goal, the committee recommends the following actions:

Implementation Actions:

3-1. National Institutes of Health and other federal and non-federal research funders should expand funding for research aimed at addressing health care inequities, structural racism, and health-related social needs, and exploring the various approaches, strategies, and policies needed to eliminate health care inequities. Advancing health equity will require major investment in health equity research project funding, workforce, data, and infrastructure.

1. These expanded funding opportunities should invest in increasing the diversity of the pool of researchers in health and health care equity research and in the infrastructure needed to conduct community-based and community-engaged research, including addressing institutional barriers to community partnerships.
2. These efforts should be coordinated by the National Institute on Minority Health and Health Disparities, as mandated by Congress.

3-2. The Department of Health and Human Services (HHS) and other relevant federal agencies should ensure that the programs they administer

are the focus of ongoing, rigorous evaluations of the impact of policies and interventions aimed at reducing inequities in health care and advancing health equity. HHS should ensure the findings from the research are effectively disseminated, implemented, and continuously evaluated for broader impact.

Goal 4: Ensure Adequate Resources to Enforce Existing Laws and Build Systems of Accountability That Explicitly Focus on Eliminating Health Care Inequities and Advancing Health Equity

Many current laws and regulations have been underused. The Office of Civil Rights, as one example, is under resourced limiting its efforts to enforce civil rights statutes and address the complaints it receives from individuals. A reported problem can only be addressed if the system ombudsman has the resources to do so. As discussed in Chapter 4, several ACA provisions that could significantly advance racial and ethnic equity in health care are under enforced or unenforced. For example, Section 1557 of the ACA is a broad nondiscrimination policy that reinforces the long-standing protections prohibiting discrimination based on race, color, national origin, age, disability, or sex (including sexual orientation and gender identity). The goal was to bring all civil rights protections for health care into one section; it applies to any health care program or activity administered by an executive agency, which includes HHS, the Department of Defense, the Department of Veterans Affairs, and federal employee health benefit programs. The Office for Civil Rights (OCR) of the Department of Health and Human Services has implementation and enforcement authority under Section 1557. However, Section 1557 remains largely a promise.

The ACA amended the Internal Revenue Code to expand the duties of hospitals as a condition of tax exemption. However, the 2010 amendments did not explicitly require hospitals to tie their community benefit expenditures to their community health needs assessments, establish minimum expenditures, or end the hospital practice of allocating these expenditures to their Medicaid shortfall. The Internal Revenue Service enforcement of the 2010 amendments has been limited. Therefore, to achieve this goal, the committee recommends the following actions:

Implementation Actions:

4-1. Congress and the U.S. Department of Health and Human Services (HHS) should ensure adequate resources are available to enable the HHS Office for Civil Rights (OCR) to enforce Section 1557 of the Affordable Care Act (42 U.S.C. § 1811), which prohibits discrimination on the basis of race, color, national origin, age, disability, or sex

(including sexual orientation and gender identity), in covered health programs or activities. As part of this enforcement effort,

1. OCR should revise the Section 1557 complaint and investigation process to improve accessibility, usability, and transparency. OCR should also increase technical assistance resources essential to supporting the complaint process available to individuals who believe that they have experienced one or more prohibited forms of discrimination in care.
2. OCR should rapidly complete and publish the results of its investigations in order to promote confidence in system accountability, greater clarity regarding the types of policies and practices that constitute discrimination, and the actions taken when discrimination is found.

4-2. The U.S. Department of Health and Human Services (HHS) Secretary should ensure that all health care programs administered or overseen by HHS include funding for costs associated with language access compliance, and that language access standards are enforced.

4-3. The Internal Revenue Service and Treasury Department should create clear enforceable standards aimed at maximizing hospital investment in community health improvement.

4-4. The Centers for Medicare & Medicaid Services should establish and enforce provider network standards across all federal programs in a manner that ensures equitable access to providers.

Goal 5: Eliminate Inequities in Health Care Coverage, Access, and Quality

Progress toward achieving all of these goals and recommendations depends on a foundation of equity for the health care system, which has structural inequities in its very design. The U.S is the only industrialized nation without universal health insurance coverage and with substantial disparities in payments for services among payers (commercial, Medicaid, and Medicare). These structural inequities result in unequal access to health care services. This means that the system is inherently separate and unequal. These inequities affect all patients because they threaten the fiscal viability of the entire system, lead to the loss of years of avoidable productive life and of economic productivity, and decrease health care affordability for everyone, including populations that are not publicly insured. These structural inequities disproportionately impact minoritized populations but addressing these inequities benefits everyone.

As discussed in Chapter 4, the ACA expanded health care coverage to millions of low-income individuals and set in motion long-term changes in how health care is organized and delivered, spurring greater emphasis on

integrating health care with services aimed at addressing health-related social needs. However, structural limitations, lack of enforcement, and Supreme Court rulings on ACA provisions have stalled broad implementation and even sometimes reversed the trajectories intended. Barriers to health insurance enrollment and affordability also continue to disproportionately affect minoritized groups. Medicaid disproportionately serves children and nonelderly adults from racially and ethnically minoritized populations, but all Medicaid enrollees (the majority of whom identify as White) have more limited access to needed medical care than those covered by Medicare or private insurance. The variation in health care provider payment rates across public and private third-party payers is associated with variation in health care provider participation in these insurance programs, with low participation especially prevalent for Medicaid. Moreover, social and economic policies that have implications for health care equity vary across states, which means that racially and ethnically minoritized populations in different states do not equitably benefit from such reforms. In particular, the Indian Health Service continues to be underfunded despite evidence of extensive unmet need and service capacity shortages and the long-standing treaty-based obligations on which Indian Health Service financing rests. The evidence suggests that inadequate funding has perpetuated inequities. To achieve this goal, the committee recommends the following actions:

Implementation Actions:

5-1. Congress should establish a pathway to affordable comprehensive health insurance for everyone.

5-2. Congress should establish a pathway to the adoption and implementation of Medicaid payment policies that ensure equality with Medicare.

5-3. In order to meet its treaty obligations, Congress should fully fund the Indian Health Service on a mandatory spending basis to improve access to care for Indigenous populations.

5-4. Congress and the administration should work to achieve an equitable and permanent solution to the inadequate Medicaid funding for U.S. territories to address the disparities in fiscal support for their health care services.

5-5. The U.S. Department of Health and Human Services should use its demonstration powers to incentivize states to test changes in scope of practice, provider payments, and other mechanisms to expand access to health care providers for underserved populations.

The committee’s recommendations call for agencies at all levels of government—federal, tribal, state, territorial, and local—and public and private payers; policy makers; and individual health care systems to implement changes. Some actions may be implemented quickly; others may take longer because they require broad societal and political support. All require careful implementation and then rigorous and continual evaluation to ensure that they are having the intended effects. Many of the recommendations will require additional resources or redistribution of resources to where they are most needed to better ensure sustainable progress. The committee believes that only Congress has the power to implement some recommendations because they will require changes to the structure of existing statutes or a higher level of appropriated funding.

Many of these recommendations align with other National Academies reports, as described in Chapter 1. Rather than duplicate all of these recommendations, the committee briefly highlights some of the most relevant examples that are foundational for achieving the outlined goals. As discussed in detail, research and data are essential resources for designing, testing, and implementing effective programs and policies. Recognizing the fundamental role of data in advancing equity in health care and other vital services, the Office of Management and Budget has undertaken major reforms to strengthen the standards to be used by federal agencies and others in maintaining, collecting and presenting data on race and ethnicity. The congressionally mandated National Academies report Federal Policy to Advance Racial, Ethnic, and Tribal Health Equity proposes a range of additional actions for Congress and federal agencies to ensure that data are collected and reported in a representative and accurate manner (see Box 9-1) (NASEM, 2023); this committee recognizes the importance of those actions to achieve implementation, enforcement, and compliance for policies to support health care equity.

This report emphasizes how inequities in HRSNs and the health care system’s inability to address these needs hinders its ability to deliver equitable care to achieve optimal health outcomes for all people. The committee recognizes that addressing inequities in health care requires substantive changes in the larger societal forces that influence health and health care, and emerging health care delivery models that integrate social needs care into health care settings show promise to advance equity. Such health care delivery models need to be scaled for broad implementation. The National Academies report, Integrating Social Care into the Delivery of Health Care: Moving Upstream to Improve the Nation’s Health proposes a range of actions aimed at building a health care workforce to integrate the capacity to address health-related social needs into health care delivery (NASEM, 2019) (see Box 9-2). This committee recognizes the importance of those actions for building a workforce and other capabilities to integrate social care into health care delivery.

Efforts to achieve optimal health care for all and eliminating racial and ethnic inequities in health care is not a zero-sum game. Addressing the factors that contribute to health and health care inequities benefits everyone. A more accessible, affordable health care system that consistently delivers high-quality care for all would advance health equity and the health of the nation. Eliminating health care inequities and advancing

health equity are achievable and feasible goals. Many of the tools needed to reach these goals are already available and need to be fully used. With concerted national efforts and adequate resources, the health care system can be transformed to deliver high-quality, equitable care to all and contribute to the larger societal goal of achieving optimal health for all. We are all in this together.

REFERENCES