8

Roadmap to Racial, Ethnic, and Tribal Health Equity

INTRODUCTION

The charge for this committee was to identify how past and current federal policies (or features/components of federal policies) considered neutral or even created to promote health and well-being instead operate in ways that create, maintain, and amplify racial, ethnic, and tribal health inequities. Moreover, the committee worked to identify key features of past and current policies that have served to reduce inequities and consider other factors to inform the creation of future policies to not only further reduce and eliminate inequities but also create equity.

As illustrated in this report, policies in numerous domains can positively or negatively impact racial, ethnic, and tribal health equity. The committee provided examples in each chapter that highlight aspects of policies, or lack of a policy in a given area, that contribute to health inequities. Many recurring themes stood out in the committee’s review of the available evidence; these themes are highlighted and discussed in Chapters 2–7 and include the following:

• A lack of prioritization of racial, ethnic, and tribal health equity in policy agenda setting;
• A lack of, inconsistent, and incorrect data, which undermines policy makers’ and researchers’ ability to fully understand the state of health inequities;
• Access and eligibility restrictions in federal policy that stifle the ability to further health equity or achieve equitable outcomes;

• Inequitable budgeting among federal programs;
• Implementation and governance issues, including federalism and how laws that could advance health equity are systematically undermined;
• A lack of enforcement of existing laws and policies;
• Inadequate community voice and expertise in federal policy making, including in policy creation and implementation;
• Inadequacy of a one-size-fits-all approach—different populations (whether that is based on race, ethnicity, ancestry, geography, sex/gender, or other intersections of identity) need different tools and resources;
• A lack of coordination among federal agencies to address the structural and social determinants of health (SDOH); and
• Insufficiency of federal regulatory change; funding, guidelines, incentives, enforcement, and data collection for evaluation and governmental capacity building are also needed.

Executive Order (EO) 13985 Advancing Racial Equity and Support for Underserved Communities Through the Federal Government¹ (see Chapter 1), underscores many of these crosscutting needs. As directed by the EO, in 2021 the Office of Management of Budget (OMB) conducted a study in partnership with the heads of federal agencies to identify methods to assess equity (OMB, 2021), with these overall findings:

• Finding 1: A broad range of assessment frameworks and data and measurement tools have been developed to assess equity, but equity assessment remains a nascent and evolving science and practice.
• Finding 2: Administrative burden exacerbates inequity.
• Finding 3: The federal government needs to expand opportunities for meaningful stakeholder engagement and adopt more accessible mechanisms for co-designing programs and services with underserved communities and customers.
• Finding 4: Advancing equity requires long-term change management and a dedicated strategy for sustainability.
• Finding 5: The scale of initiatives by the federal government creates an opportunity to advance equity by ensuring that resources are made available equitably though its core federal management functions including financial management and procurement.

OMB issued a request for information to seek input, and recommendations from a broad array of stakeholders in the public, private, advocacy, not-for-profit, and philanthropic sectors, including state, local, tribal, and

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¹ Exec. Order No. 13985, 86 FR 7009 (Jan. 2021).

territorial entities, on available methods, approaches, and tools (Performance.gov, 2021). The input aligns with the opportunities and barriers identified by the committee in Chapters 2–7 (see Box 8-1 for summary of the comments).

The EO and public comments responding to OMB are major advancements in federal policy making focused on equity. However, EOs are political and so risk lack of sustainability through changing administrations.

In Chapters 1–7, the committee focused on both the upstream and downstream impacts of federal policies (including policies that have legacies of trauma, such as theft of land and displacement from ancestral lands; see Chapters 2 and 7). To be most effective, federal policies, programs, and services need to focus on the upstream, population-level preventive issues that might impact root causes, using a “whole-of-government,” “whole person,” and “whole community” approach that increases intentional planning and coordination among departments and agencies and across programs and services to better meet both the short- and long-term whole person/family/community needs in more comprehensive, integrated, and aligned ways. For example, the Supplemental Nutrition Assistance Program (SNAP) (see Chapter 3) seeks to mitigate food insecurity and is an essential program for doing so, but it does not address the root causes, such as lack of employment opportunities and access to fresh food. Another example is health insurance. Access is predominantly linked to employment and incentivized by the federal government through tax benefits, leaving hundreds of thousands of people who lack employer-provided insurance with limited public insurance options. Many of these individuals are unable to afford private coverage and ineligible for public options.

These employees are more likely to be racially and ethnically minoritized people in service and other industries, which are unlikely to offer health insurance benefits (small companies are not required to offer health insurance benefits). These populations have also been excluded from employment opportunities due to employment discrimination, immigration policies, and other factors (see Chapters 2 and 3). Furthermore, employment opportunities are dependent on educational opportunities, which are disproportionately less available to racial and ethnic populations that are minoritized (see Chapter 4). One reason for racial and ethnic disparities in educational opportunities is public elementary and secondary schools largely being financed by local property taxes (supplemented by federal and state funding), which depend on the value of the local housing stock. Due to the legacy of housing segregation (including redlining and the disproportionate impact of the 2007–2010 subprime mortgage crisis on minoritized and underserved people and communities) (Badger, 2013), these populations are more likely to live in areas with lower average property values, which results in lower property taxes to support public education (Rugh and Massey, 2010).

Conclusion 8-1: The widespread inequities in education, income, and other factors that impact health are the result of the disparate and harmful impact of trauma, laws, and policies at all levels of government, both past and present. Health inequities are prevalent, persistent, and preventable and federal policy is an important tool for correcting historical and contemporary harms.

On the path to eliminating health inequities, both short-term strategies (e.g., mitigation by getting people what they need now to thrive) and long-term structural and systems change strategies that address the root causes (e.g., employment and economic development) will be needed. Based on the committee’s guiding principles laid out in Chapter 1, its review of federal policies across the SDOH in Chapters 2–7, the crosscutting issues identified, and its information gathering, the committee identified four action areas that include both short- and long-term strategies for improvement of federal policy making, using a panoramic view across the SDOH to improve these vital conditions for all:

1. Implement Sustained Coordination Among Federal Agencies
2. Prioritize, Value and Incorporate Community Voice in the Work of Government
3. Ensure Collection and Reporting of Data Are Representative and Accurate
4. Improve Federal Accountability, Enforcement, Tools, and Support Toward a Government That Advances Optimal Health for Everyone

The committee presents 13 recommendations organized by these four action areas. Some will not be budget neutral, but they will address many costly inefficiencies in current federal policies and programs.

RECOMMENDATIONS

Many of the policy shortcomings the committee identified at the institutional level could be addressed in the short term. Some of the structural-level needs will require broad societal-level change and long-term effort. Both levels of action are required to get on the path to eliminating—versus only mitigating—racial, ethnic, and tribal health inequities, which are tied to accumulated inequities over generations that need to be unwound to truly achieve health equity. National Academies reports have made relevant recommendations to improve federal policies to advance racial, ethnic, and tribal health equity that have not yet been implemented and should also be considered (see, for example, Boxes 3-1, 4-2, 5-9, 6-2, 7-5). The broad

Statement of Task for this report created the opportunity to consider recommendations to address systems affecting the breadth of federal policy contributing to racial, ethnic, and tribal health inequities.

Action 1: Implement Sustained Coordination Among Federal Agencies

The federal policy landscape is complex, with 15 executive-level departments, over 100 agencies, and the legislative and judiciary branches. The policies of many of these agencies affect health, even if health is not their main purview and they focus, for example, on housing, transportation, or homeland security. Coordination among federal agencies is critical to advance health equity. It is encouraging that some collaborations are underway, such as the Federal Plan for Equitable Long-Term Recovery and Resilience (ELTRR) (ELTRR Interagency Workgroup, 2022), a major interagency effort that has transcended administrations (see Chapter 1 for more information).

The importance of a whole-of-government approach to advance equity is central to EO 13985. Similar to a Health in All Policies Approach (see Chapter 1), the committee recommends a parallel “whole person” and “whole community” approach. Just as health equity is not only about health care access and quality—as laid out in this report—it is the responsibility of not only the Department of Health and Human Services (HHS) but multiple departments, such as the Departments of Housing and Urban Development, Education, Transportation, Commerce, and Agriculture, all of which impact individual health and well-being. Therefore, achieving racial, ethnic, and tribal health equity requires centering equity in federal policy creation, decision making, implementation, and regulation (including accountability standards) and a sustained effort to ensure equity in agency processes and outcomes.

The recent release of the Federal Plan for ELTRR, led by the Office of Disease Prevention and Health Promotion within HHS, which lays out a whole-of-government approach to strengthen resilience and improve wellbeing in communities nationwide, provides an important framework for interagency coordination. The committee reviewed the plan’s recommendations to amplify and add to strategies intended to eliminate racial and ethnic health inequities and improve well-being. As discussed in Chapter 7, the ELTRR plan includes 10 crosscutting recommendations to improve agency coordination and infrastructure and support better alignment and collaboration (ELTRR Interagency Workgroup, 2022).

However, as discussed by OMB, “experts note that changing systems and organizations is notoriously challenging—so much so that the work of sponsoring large-scale change is often referred to as a ‘wicked problem.’ The ‘wickedness’ of the challenge lies in the fact that problems often

persist because of complex interdependencies, where solving one aspect of the problem reveals or creates new challenges. . . Systems change becomes feasible when a sense of urgency prevails and the status quo becomes untenable” (OMB, 2021, p. 35). In addition, federal programs can have different legal responsibilities, many of which cannot be easily coordinated around. The OMB report adds that equity specialists explain that the work typically involves complex, long-term change management and that this sustained attention is needed because many forms of “systemic bias flourish in practices that appear to be neutral on the surface” and that applying equity and justice to specific practices can mean different things to different people based on their lived experiences (OMB, 2021, p. 36). OMB notes that the implications of these divergent perspectives are significant, as agency stakeholders “may differ in their view of equity challenges across different agencies, just as stakeholders within government may not always agree on how to advance equity optimally. Thus, even when agencies subscribe to a common value—for example, of allocating resources fairly—different agency teams (or even different people on the same team) may have different ideas about how to make policies and procedures more equitable” (OMB, 2021, p. 36).

Recommendation 1: To improve health equity, the president of the United States should create a permanent and sustainable entity within the federal government that is charged with improving racial, ethnic, and tribal equity across the federal government. This should be a standing entity, sustained across administrations, with advisory, coordinating, and regulatory powers. The entity would work closely with other federal agencies to ensure equity in agency processes and outcomes.

Multiple options exist to configure this entity, with advantages and disadvantages.

• Option 1: The president could establish a Racial, Ethnic, and Tribal Equity Council (RETC) by EO. It would be added to the president’s executive office and similar to the recently created Gender Policy Council.² The RETC would need to be vested with the authority to ensure needed actions are undertaken by federal agencies to address equity. It would work in coordination with the other White House policy councils and across all federal offices and agencies to drive a strategic, whole-of-government approach to advance racial and ethnic equity. The RETC would include racial, ethnic, and tribal equity policy experts. Given the central

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² See https://www.whitehouse.gov/wp-content/uploads/2021/10/National-Strategy-on-Gender-Equity-and-Equality.pdf (accessed March 9, 2023) for more information.

• role of community involvement and engagement for racial, ethnic, and tribal equity, a Senior Advisor on Community Engagement could be created as part of this office. It is important to note that all presidential advisory bodies are subject to the authority of the president to continue, amend, or terminate. Strong partnerships with OMB in its oversight of agency performance in relationship to racial, ethnic, and tribal equity and with the Domestic Policy Council (DPC) in the crafting and implementation of policies can further solidify this role. Moreover, creating a new council would require a significant investment of resources. If established, the RETC would not replace the White House Council on Native American Affairs; and/or
• Option 2: The president could establish a Racial, Ethnic, and Tribal Equity Policy Team within the DPC. The DPC comprises numerous policy teams and offices that work to implement the president’s domestic policy priorities. This team would align with the role of the DPC, and start-up costs would be lower compared to creating a council (see Option 1), but this is also subject to the priorities of the president in office; and/or
• Option 3: The president could appoint a senior staff member to OMB with the responsibility of overseeing implementing the president’s vision for racial, ethnic and tribal equity across the executive branch. OMB is already involved in this process, so this position would be a natural extension of its work on equity oversight and coordination.

This recommendation builds upon EO 13985, which created task forces and working groups related to these efforts that are synergistic with this recommendation (e.g., Interagency Working Group on Equitable Data) and would work in collaboration with this council (similar to what is being done for the Gender Policy Council). The entity developed would work with all federal agencies with attention to all SDOH.

Research of organizational effectiveness in improving equity outcomes suggests that structures that embed accountability, authority, and expertise are essential to reduce/eliminate inequities across race, ethnicity, gender, and other demographic characteristics (Kalev et al., 2006). Moreover, a growing body of research and research expertise exists on measuring equity, designing and implementing more equitable policies and evaluating their impact, and holding institutions accountable for achieving equity goals. As efforts to advance coordination and accountability are implemented, those leading this work can draw from this research and practice capacity. This recommendation reflects the accountability, authority, and expertise required to achieve equity based on the research evidence.

A cost analysis was beyond the scope of the committee’s work, but the committee notes that the monetary cost to implement this recommendation would vary by option.

Leadership for the Equitable Long-Term Recovery and Resilience Plan

A major component of the ELTRR Plan is establishing an executive steering committee to guide and compel coordination across federal agencies at multiple levels. After final consensus on the plan from agencies involved in its drafting, the committee will be established and provide guidance for implementing recommendations, agency commitment, actionable steps, and milestones. Executive steering committee “decisive leadership is required to compel coordination, within and across federal departments and subordinate agencies, in service of policies and programs that strengthen what works well and re-engineer what no longer serves” (ELTRR Interagency Workgroup, 2022, p. 35). The ELTRR Plan notes that the committee will be composed of senior executive leaders from a significant number of departments and agencies and will set a vision of the role of the federal government in building community and individual resilience and guide implementation of the plan. The Assistant Secretary for Health and one non-HHS agency lead (to be determined) will serve as committee cochairs. The initial committee charge is the following:

• Deliberate on the plan’s recommendations,
• Prioritize strategies for implementation,
• Delegate actions to respective agencies,
• Assess the progress and identify opportunities to go further or redirect, and
• Formally charge and empower the ELTRR Interagency Workgroup with implementation support and monitoring (ELTRR Interagency Workgroup, 2022).

The committee affirms the crucial role of the executive steering committee:

Recommendation 2: The president of the United States should appoint a senior leader within the Office of Management and Budget (OMB) who can mobilize assets within OMB to serve as the cochair of the Equitable Long-Term Recovery and Resilience Steering Committee.

This configuration is ideal because, unlike HHS, OMB has the capacity and authority to oversee implementing ELTRR across the executive branch (i.e., executive departments and agencies), including oversight of agency performance. Moreover, given that the plan has a 10-year horizon,

OMB is made up mainly of career-appointed staff who provide continuity across changes of party and administration to ensure plan implementation is sustainable. An OMB-led committee also better reflects the interagency nature of the ELTRR Plan.

Equity Audit and Scorecard

“As policies and budgets are designed and policy alternatives are debated” for racial, ethnic, and tribal equity, policy makers should consider the “potential to remediate or exacerbate inequitable outcomes and design policies and budgets accordingly” (Ashley et al., 2022, p. 5). However, as discussed in a recent Urban Institute and PolicyLink report, data are needed during policy making for Congress to better prioritize racial, ethnic, and tribal equity and improve the design and budgets of proposed policies (Ashley et al., 2022). Congressional Budget Office (CBO) analysts are not required to score legislation for its effect on racial, ethnic, or tribal equity, “though CBO is starting to present analyses disaggregated by race and ethnicity. CBO recently noted that showing income, taxes, and transfers by race is sometimes not possible because of limited data disaggregated by race or privacy concerns regarding whether race and ethnicity data can be matched to common administrative data sources” (Ashley et al., 2022 p. 5). Policies are often adopted that unintentionally contribute to unfair outcomes related to the SDOH—sufficient data and analysis are needed to understand the different effects of policies across racial, ethnic, and tribal groups (Ashley et al., 2022).

Implementing this recommendation will help ensure the equitable and effective distribution of resources across the SDOH, including for the policies and programs discussed in Chapters 3–7. If a health equity coordination entity is created per Recommendation 1, it could oversee and coordinate this process; however, such an entity is not required to implement this recommendation.

The equity audit of existing federal policies in Recommendation 3b would build on the work currently underway by federal agencies under EO 13985, updated by EO 14091,³ that directs each federal agency to develop health equity teams to implement its equity initiatives. Given the numerous federal policies and programs, a mechanism will need to be developed to identify which should be prioritized and reviewed for Recommendations 3a and 3b, but it could include factors such as programs with known barriers to enrollment or access or that have shown inequitable outcomes in the past. This should be done with broad public input. In addition, when an existing policy is reviewed for other reasons,⁴ an equity audit can be conducted simultaneously. The coordination entity from Recommendation 1 could undertake this role. Another important factor is how accountability will be applied after these audits are conducted. For example, if a policy does not meet the equity criteria used, a plan should be developed and put in place to ensure needed changes are enacted (or, when appropriate, the policy may need to be stopped if causing harm or rethought through new legislation). Similarly, if lack of enforcement is identified as contributing to racial, ethnic, or tribal health inequity, a plan to address this would be needed. For example, federal agencies have a critical role to play in enforcing civil rights protections (especially under Title VI of the Civil Rights Act of 1964).⁵

Elements for consideration to develop measures for the equity audit reflect concerns identified in this report on structure, process, and outcomes: does the structure of the policy exclude groups that would benefit and are disproportionately minoritized (such as immigrants or people with disabilities); does the process streamline administration to avoid additional barriers for minoritized groups; has community voice and expertise been included to improve the program; and are final outcomes assessed with appropriate

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³ Exec. Order No. 14091, 88 FR 10825 (Feb. 2023).

⁴ For example, the Presidential memorandum in 2021 directing Department of Housing and Urban Development to review discriminatory housing practices and policies (The White House, 2021b).

⁵ Title VI Statute, 42 U.S.C §§ 2000d - 2000d-7.

data for accountability to achieve program goals equitably across racial, ethnic, and tribal groups?

The Urban Institute notes that “equity measurement is multifaceted and cannot be reduced to a single construct” and a multifaceted approach is needed (Martin and Lewis, 2019, p. 3). Martin and Lewis (2019) identified six main components that could be taken into consideration for the equity audit: (1) historical legacies (e.g., implications of how past inequities might impact effectiveness of a law); (2) awareness of populations (e.g., procedural fairness and equal protections); (3) inclusion of other voices; (4) access discrimination (e.g., access is available equally, including removal of any financial, perceptual, or behavioral barriers that different groups may face); (5) output differences (e.g., a process assures that services and benefits are either delivered consistently or enhanced for underserved populations); and (6) disparate impacts (e.g., quantifying the potential outcomes in different populations while controlling for other contributing factors, such as the SDOH).

Developing a scorecard to assess future proposed legislation (Recommendation 3c) will provide a guardrail yet still offer flexibility. It is beyond the expertise of the committee to prescribe how the equity audit is undertaken, but considerations for this process include who is best placed to conduct the audits—for example, the Government Accountability Office, researchers, a newly appointed government standing committee, or perhaps a combination of governmental and nongovernmental actors.

Legislation is the “bare bones” of a policy or program, and implementation through regulations and adjustments in the field to address unanticipated complications determine its implementation. Therefore, even if an equity score is implemented for proposed legislation, an equity audit would still be required once the program or policy has been fully implemented.

Although there is no existing or ready to use method for determining or rating equity in this manner, sources are available to inform the development of the equity audit and scorecard (for example, see Ashley et al., 2022; Martin and Lewis, 2019; MITRE, n.d.; OMB, 2021; Urban Institute, n.d.)—for example, OMB identified several tools in its 2021 review (OMB, 2021), and the Urban Institute and PolicyLink Scoring Federal Legislation for Equity report also provides strong elements that should be considered (Ashley et al., 2022) (see Box 8-2 for components of equity scores). The report also poses questions for consideration for an equity scorecard that would apply here that would assess whether the proposed law centers equity in its design and intent:

• Does the proposed policy specify eligibility, access, and experiences and aim to overcome current inequities? If the policy is not implemented as intended, could this lead to inequitable outcomes?
• Will the policy close gaps in access and reduce disparities in outcomes across groups, and does it increase access to opportunity for all?

Various mechanisms can be used for the scorecard and could vary based on available data, evidence, and process. For example, point estimates could be used when data are available, or quantitative measures could be used to provide more context for lawmakers (Ashley et al., 2022).

An equity score needs to be provided early enough in the legislative process for members of Congress to have time to consider its implications (Ashley et al., 2022). “In the case of budget scoring, for example, CBO is required by law to provide cost estimates on legislation that is reported by full committee, which allows more informed consideration of budget issues in advance of action by the full House or Senate” (Ashley et al., 2022).⁶ In some cases, CBO provides informal advice on the proposed legislation throughout the process to members of Congress on the budgetary impact of alternatives that are suggested during the legislative process (Ashley et al., 2022). Improved data collection would allow an equity scorecard to better assess the impact of legislative proposals (see Recommendations 5–9).

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⁶ For more information, see https://www.cbo.gov/about/processes (accessed May 26, 2023).

Although the equity audit of existing policies could be implemented in the short term, the equity scorecard for proposed legislation will likely be a long-term effort, as it faces several barriers to implementation. One aspect that should be considered while developing the scorecard is the potential to slow down legislation—however, investing the time to assess equity impacts will make legislation stronger. As noted, a framework and metrics to assess legislation specifically on equity would need to be developed, which could take considerable time, as stakeholders would have to agree on the questions and measures. Having the correct metrics in place will be critical to the success of the scorecard and assuring adequate vetting of proposed legislation. In addition, federal resources and employee staff time would be required. However, given the large impact that federal policies can have as documented in this report—to both advance and hinder racial, ethnic, and tribal equity—it is imperative to assure that future legislation is vetted and then audited once implemented. Structural changes are needed to move from mitigating to eliminating health inequities.

Proposals for an equity scorecard or similar have been introduced by legislators, and CBO occasionally does assess the equity impact of legislative proposals (Ashley et al., 2022). As noted in the 2022 Urban Institute and PolicyLink report, certain legislative proposals would require CBO to take steps toward developing equity scores for new proposals. For example, H.R. 2078 (2021), among other actions, would require CBO to provide an analysis of the equity impact of a bill or resolution in each of the first 4 years that it would be effective; and the CBO FAIR Scoring Act (S. 2723 and H.R. 5018, 2021) would require CBO “. . .estimate the distributional impacts by race and income—in dollar terms and as a percent change in after-tax-and-transfer-income—for bills that have a gross budgetary effect of at least 0.1 percent of GDP in any fiscal year within the 10-year budget window” and “. . .provide such scores to relevant congressional committees before the bills are reported to the floor, to the extent possible)” (Ashley et al., 2022 p. 22).

Summary

The committee offers recommendations for sustained coordination and accountability:

• Create a permanent and sustainable entity within the federal government that is charged with improving racial, ethnic, and tribal equity across the federal government (Recommendation 1).
• Appoint a senior leader of OMB to serve as the cochair of the Equitable Long-Term Recovery Plan (Recommendation 2).

• Undertake a equity analysis of existing and past policies (Recommendation 3).
• Develop and implement an equity audit and an equity scorecard to assess federal policies and identify needed changes (Recommendation 3).

Implementing Recommendations 1–3 would signal that racial, ethnic, and tribal equity is a national priority and advance equity in domestic policy development, implementation (including accountability standards), and evaluation (of current federal policies) across domains including health, economic security, the criminal legal system, and education.

Action 2: Prioritize, Value, and Incorporate Community Voice in the Work of Government

It is essential to base federal policy for all SDOH on the best available evidence—this includes communities’ experiences, knowledge/expertise, and needs (Farrell et al., 2021). The reasons to value, prioritize, and incorporate community voice in the work of government are ethical, practical, and related to accountability and achieving intended outcomes.

Affected communities need to be an integral part of the legislative process from beginning to end and in deciding how laws, regulations, programs, and policies are administered. Racial, ethnic, and tribal communities have been consistently left out of the federal policy-making process, and the effects have sometimes been egregiously inequitable. The voices of communities are needed to redress past harms and earn trust (ethical imperative), secure partnership, buy-in, and collaboration (practical imperative), and ensure policies are fully responsive to their needs and advance health equity (accountability and effectiveness).

Studying the relationship between engaging communities in policy making that will affect them and the resulting policy outcomes (e.g., the relationship between community-engaged interventions and health outcomes) involves navigating complex human and social systems and extensive mixed methods research, including of subjective and hard-to-measure factors. Over the past decade, study of these relationships has begun to yield evidence of positive effects. For example, a systematic review by Haldane and colleagues (2019) concluded there was “promising evidence that community engagement has a positive impact on health, especially when supported by a strong organizational and community foundation.” An earlier meta-analysis found that “public health interventions using community engagement strategies for disadvantaged groups are effective in terms of health behaviours, health consequences, health behaviour self-efficacy,

and perceived social support. . . . There are also indications from a small number of studies that community engagement interventions can improve outcomes for the community” (O’Mara-Eves et al., 2015).

Many examples, especially from recent history, illustrate the need for trusted community representatives to inform, codesign, and often assist with implementing federal programs and priorities. This is especially true for leaders or organizations representing minoritized racial, ethnic, and tribal communities. For example, in early 2020, greater investment in community advisory groups, including regional Census 2020 Complete Count Committees, could have helped avoid many of the racial disparities that arose with the speedy rollout of COVID-19 vaccines in early 2021 (Schoch-Spana et al., 2021). Similarly, the disbursement of hundreds of billions of dollars from the American Rescue Plan, designed to help communities recover from the health and economic consequences of the pandemic, relied on the decisions of elected representative institutions. In many instances, however, racial, ethnic, tribal, communities had little opportunity to inform or influence the disbursement of these funds (CPEHN, 2022).

The importance of working with communities and centering their voices and knowledge is discussed throughout this report. It includes extensive discussion of data issues (e.g., data sovereignty for Tribal Nations) and data collection, and examples of advocacy that achieved changes in federal policy. Although the examples of organized advocacy for policy change are compelling, integrating community voice in the federal policymaking process more expansively would imply more proactive engagement, rather than reactive and slow response to community needs and requests.

Chapter 4 outlines several channels for involving communities in federal education policy, by supporting states and local school districts and communities with resources and guidance to work together to improve educational achievement and health. The federal government has provided resources for community schools, and national-level efforts have identified “four core pillars of work that drive improved student outcomes” (Task Force on Next Generation Community Schools, 2021): after-school, summer, and other curriculum-enriching programming; active engagement of families and community members; collaborative and coordinated community school services and leadership; and support of students through integrated, holistic services (e.g., ranging from mental health care to housing) provided by strategic community partnerships (Task Force on Next Generation Community Schools, 2021).

Engaging community voice in federal policies that shape health care (see Chapter 5) is challenging, but existing models do work, and recent developments are promising. Federally qualified health centers are required to have at least 51 percent of their boards include center patients and be demographically representative of the communities they serve. Recent efforts

to ensure representation on clinical trials are part of a broader attention to the issue of mistrust in the biomedical establishment and the recognition that community participation and engagement in health care are essential.

In Chapter 6, the committee provided the example of advocacy organizations whose efforts decades ago yielded the “socially disadvantaged farmer and rancher” designation in the 1990 Farm Bill, to inform targeting of specific Department of Agriculture programs (e.g., guaranteed loans, assistance under the American Rescue Plan) to racially and ethnically minoritized farmers.

The discussion of social and community context in Chapter 7 includes two major promising frameworks for community engagement. The OMB report on assessing equity outlined how key strategies across all domains of federal work would center community needs, expertise, and voice (on issues ranging from data collection to communication to codesign of programs and services) (OMB, 2021). The federal ELTRR Plan uses the Seven Vital Conditions Framework (which was first introduced in the 2021 Surgeon General’s Report Community Health and Economic Prosperity [HHS, 2021]). It centers “belonging and civic muscle”—a term of art describing the range of community and civic engagement activities and opportunities (for example, see Box 7-1 [One Million Experiments, n.d.]).

A promising strategy to improve policies that do not promote health equity is to elevate and empower community voice and expertise to influence outcomes through the following design principles:

1. Prioritize meaningful community input by moving from the level of inform toward the more substantive levels of consult, involve, collaborate, and empower in the International Association for Public Participation Framework whenever possible (IAP2, 2018);
2. Ensure effectiveness, efficiency, and equity in the way that community input is collected;
3. Maximize coordination and sharing of information and insights on implementation across federal agencies while maintaining data privacy and client confidentiality; and
4. Within each federal agency, maximize coordinating and sharing information and insights on implementation among federal, state, local, and tribal government counterparts.

While there are many technical and scientific advisory bodies at federal departments and agencies, few recognize the unique perspectives of communities—including the recipients and beneficiaries of federal programs and services—as the “expertise” and (lived) experience as essential for designing, implementing, and evaluating those programs and services.

Several mechanisms for community input at the federal level exist to learn from, improve, and/or implement more broadly—for example, community engagement associated with the decennial census, the White House Initiative on Asian Americans and Pacific Islanders Regional Interagency Working Group, and Tribal Consultation and Urban Confer (see Chapter 7).

Action 3: Ensure Collection and Reporting of Data Are Representative and Accurate

To advance health equity, data need to better capture the experiences and needs of tribal and smaller racial and ethnic groups. As discussed in Chapter 2, lacking representation in data collection and inaccurate or imprecise reporting have meant that government agencies have been unprepared to understand, let alone reduce or eliminate, health inequities. It is essential to collect and use high-quality data to understand the full extent of inequities and appropriately distribute resources. Federal government data collections have, at times, occurred without accountability or consideration of their effects and demands on communities (e.g., time and other resources), matters of tribal sovereignty, and community interest in the use of the data. Below, the committee provides four recommendations to improve federal data sources to advance health equity.

These are not the only recommendations on this topic. Numerous reports outline data gaps, needs, and priorities related to racial, ethnic, and

tribal health inequities (for example, see AAPI Data and National Council of Asian Pacific Americans, 2022; Bhakta, 2022; Kauh et al., 2021; Moy et al., 2005; NRC, 2004; RWJF, 2022; Yom and Lor, 2022). The committee builds on existing recommendations and tailors them specifically to data needs and actions related to federal policy making and decision making and for use by communities and other advocates to advance racial, ethnic, and tribal health equity.

Data Equity for Small Minimum Reporting OMB Categories

Sample sizes in national surveys are often too small to obtain reliable nationally representative estimates required to monitor issues of health equity for all the minimum reporting OMB categories of race and ethnicity.⁷ The issues are more pronounced the smaller the category and/or survey. For the current minimum reporting OMB race and ethnicity categories, the 2020 Census counts 1.6 million Native Hawaiian and Pacific Islander (NHPI), 9.7 million American Indians and Alaska Native (AIAN), 21 million Asian, 38 Black or African American, 62 million Hispanic/Latino/a, and 204 million White people. The omission of high-quality and accurate nationally representative data for these minimum reporting OMB categories perpetuates inequities and promotes inaction—particularly when these groups are invisible in federal datasets.

For example, studies from both the California Health Interview Survey, which has included oversamples of Asian detailed-origin groups that are lacking in the National Health Interview Survey (NHIS), and the representative NHPI NHIS found significant Asian and NHPI differences in rates of chronic diseases, disease comorbidity, disability, and self-reported physical health (Adia et al., 2020; Galinsky et al., 2017, 2019; Zelaya et al., 2017). The data currently collected on these smaller minimum OMB categories are often biased due to incomplete representation, poorly designed sampling frames, inadequate collection approaches, language barriers (including failure to administer instruments in the person’s primary language), and culturally inappropriate question design. Despite recognition that health outcomes are generally worse for these populations, the lack of representative data makes it impossible to understand the full extent of inequities and where to focus interventions. A federal and federal tribal-consulted data system is needed that is intentionally committed to support data equity, particularly for the smallest minimum OMB categories. The statements in this paragraph are also true for detailed-origin categories within OMB

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⁷ OMB requires five minimum reporting categories: American Indian or Alaska Native, Asian, Native Hawaiian or Other Pacific Islander, Black or African American, and White, and an ethnicity category of Hispanic or Latino (OMB, 1997).

minimum categories—the committee addresses issues specific to detailed-origin categories in the subsequent recommendation.

Recommendation 5: The Office of Management and Budget (OMB) should require the Census Bureau to facilitate and support the design of sampling frames, methods, measurement, collection, and dissemination of equitable data resources on minimum OMB categories—including for American Indian or Alaska Native, Asian, Black or African American, Hispanic or Latino/a, and Native Hawaiian or Pacific Islander populations—across federal statistical agencies. The highest priority should be given to the smallest OMB categories—American Indian or Alaska Native and Native Hawaiian or Pacific Islander.

Detailed-Origin Categories and Data Disaggregation

Each OMB minimum reporting category has important differences based on origin and/or tribe. The need to collect and disseminate data at this level of disaggregation has been discussed for decades. Unfortunately, all federal agencies have not undertaken a concerted effort to address it. Recently, the Census Bureau has made positive strides, and many expert panels and committees have provided recommendations regarding how to disaggregate data and accomplish this goal (see Chapter 2). This need is recognized across multiple racial, ethnic, and tribal populations, and especially American Indian or Alaska Native, Asian, Black or African American, and Native Hawaiian or Pacific Islander detailed-origin groups.

Countless examples exist of the value of deeper disaggregation. In one, the Census Bureau, in collaboration with the National Center for Health Statistics, employed the American Community Survey (ACS) sampling frame to identify a representative sample of NHPI households for the 2014 NHPI NHIS. It found significant racial differences between NHPI and other racial groups and detailed-origin differences within the NHPI population on outcomes ranging from serious psychological distress to asthma, cancer, and diabetes (Galinsky et al., 2017, 2019).

Meaningful Tribal Consultation and Urban Confer (IHS, n.d.) will be needed when developing methods, surveys, and equity assessments to produce accurate and meaningful estimates for disaggregated tribal populations. These methods could be expanded to other OMB minimum categories, such as Asian, Black or African American, Native Hawaiian or Pacific Islander, and Latino/a, for greater granularity, particularly at the subnational level, including states and counties that help administer federal programs.

Disaggregating racial and ethnic minimum category data takes many forms. It is not only by origin and/or tribe; these communities contain many

important intersecting identities, including lesbian, gay, bisexual, transgender, queer (or questioning), and other sexual identities people, people of varying immigrant statuses, people with disabilities, women, and children.

To enhance data systems to produce accurate and meaningful estimates of disaggregated data for all minimum OMB categories, the committee recommends:

Recommendation 6: The Office of Management and Budget (OMB) should update and ensure equitable collection and reporting of detailed-origin and tribal affiliation data for all minimum OMB categories through data disaggregation by race, ethnicity, and tribal affiliation (to be done in coordination with meaningful tribal consultation), including populations who self-identify as American Indian or Alaska Native, Asian, Black or African American, Hispanic or Latino/a, and Native Hawaiian or Pacific Islander.

Implementing this recommendation will increase racial, ethnic, and tribal health equity through the uniform use of detailed-origin and tribal affiliation data to be collected, analyzed, and disseminated for all groups. This data should also be accessible to the affected communities. Important considerations for this recommendation include the following:

• It may be difficult to share results for some groups because the small samples may create large margins of error or privacy concerns. Disseminating data by detailed origin should be done to the maximum extent possible, weighing the benefits of doing so against the risk of privacy violations for individuals and households. Disseminating point estimates by population group should include margins of error at the 95 percent confidence interval, with no predetermined cutoff on sample size as long as data privacy concerns are addressed.
• To the fullest extent possible, checkboxes should be provided on detailed origin and federal- and state-recognized tribes rather than write-in boxes for Black or African American and AIAN populations (OMB is considering this).⁸ Evidence from the Census Bureau’s 2010 Alternative Questionnaire Experiment indicated a reduction in detailed-origin identification among some Asian groups when the write-in format was provided in lieu of checkboxes (Compton et al., 2013). Agencies should provide as many checkboxes as possible for detailed-origin groups, and electronic

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⁸ See https://www.federalregister.gov/documents/2023/01/27/2023-01635/initial-proposals-for-updating-ombs-race-and-ethnicity-statistical-standards (accessed March 11, 2023).

• data collection could include more checkbox categories than might be permissible in paper forms that comply with the Paperwork Reduction Act. From an equity perspective, having checkboxes for some but not all categories can lead to disparate results because of the greater likelihood of coding errors and higher burdens posed by write-in responses.
• Expanding sampling frames to generate accurate statistical information on detailed-origin groups (such as Chinese, Haitian, Hmong, Chamorro, Native Hawaiian, Nigerian, Samoan, Tongan, and Vietnamese people) where prior evidence—such as findings on health inequities by race and detailed origin from scientific publications, and on housing and socioeconomic inequities from federal data sources, such as the ACS—justify producing statistically reliable estimates of the population at varying levels of geography. Decisions to expand sampling frames to detailed-origin populations need to weigh the balance of factors, such as the size of the population, the magnitude of the disparity based on scientific research, and the cost and feasibility of producing such samples.
• Decisions on allocating agency staff and financial resources to collect, analyze, and disseminate detailed-origin data need consideration with a view toward equity and the program coverage and effectiveness implications of providing such data. For example, distinguishing between self-identified German-origin versus Welsh-origin respondents is less likely to be a significant concern for racial equity with respect to service delivery or population-based outcomes. By contrast, groups identifying as Middle East and North African, Cambodian, Laotian, African American, Haitian, Dominican, Nigerian, Tongan, Marshallese, Samoan Navajo, and Cherokee have varying language access needs and significant historical and contemporary patterns of inequitable service delivery and so require disaggregated data to inform policy decisions.

As described in Chapter 2, in January 2023, OMB released a Federal Register notice with proposed changes to data collection on race and ethnicity (OMB, 2023). Several of these proposed changes are in line with the committee’s recommendation, such as requiring federal agencies to collect detailed race and origin data by default unless they determine that the benefit of doing so would not justify the additional burden or risks to privacy. However, the proposal has several shortcomings. For example, the categories set forth are sociopolitical constructs and not an attempt to define race and ethnicity biologically or genetically. The examples of IndoFijians counted toward NHPI and Indo-Caribbean counted toward Black reflect the problem faced in bridging identity and achieving comparable

data by race or ethnicity. In addition, “minority” and “majority” have been removed to reflect changing demographics in the United States. However, due to the sustained differences in health and other outcomes for the populations currently referred to as minorities, it is important to differentiate these populations. Populations who have been “racially and ethnically minoritized” or similar could be used to account for populations who may be the largest racial or ethnic group in a jurisdiction but nevertheless continue to face barriers and cumulative burdens based on race or ethnicity (such as Latino/a people in California). Furthermore, the AIAN population does not appear to have six checkboxes assigned to represent detailed categories as other racial and ethnic groups do—all detailed information is collected through write-in. Finally, removing “who maintain tribal affiliation or community attachment”⁹ for the AIAN definition is problematic because not all AIAN people are enrolled members of federally recognized tribes (see Chapter 2), so this would lead to further undercounting this population, perpetuating inequities.

Measures of Social and Structural Inequities

Interpretations of racial and ethnic health inequities without proper social and environmental context may inadvertently emphasize individual-level biological and behavioral explanations of the inequities and risk blaming individuals and groups for poor health outcomes. Including measures of racialized social and structural inequities at multiple levels of influence in national health surveys and other federal health data sources can contextualize the data and promote the investigation of the effects of social and structural factors on these inequities. For example, Chapter 2 points out that national health surveys and other federal administrative and surveillance data sources will have greater potential for informing the development of interventions that address the root causes of racial, ethnic, and tribal health inequities in their proper social, economic, and historical context if such measures are collected.

Recommendation 7: The Centers for Disease Control and Prevention should coordinate the creation and facilitate the use of common measures on multilevel social determinants of racial and ethnic health inequities, including scientific measures of racism and other forms of discrimination, for use in analyses of national health surveys and by

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⁹ Those with community attachment are AIAN people who are not enrolled members of a federally recognized tribe. There are racial AIAN people whose tribes were never recognized, unrecognized (during termination era), or are state recognized; they may still identify as AIAN but are in a different legal category.

other federal agencies, academic researchers, and community groups in analyses examining health, social, and economic inequities among racial and ethnic groups.

Such measures should pertain to racism and other forms of discrimination and include:

• Social, economic, educational, political, and legal indicators of racial and ethnic inequities in a range of societal domains (e.g., employment, housing, health insurance, homeownership, incarceration) for diverse racially and ethnically minoritized groups; and
• Measures of interpersonal racism, individual-level experiences of structural racism, and sociocontextual measures of structural racism at the federal, state, county, local, and neighborhood levels (for examples of such measures see, Agénor et al., 2021; Greenfield et al., 2021; Krieger, 2020; Mesic et al., 2018; Williams, 2016).

These measures should also be usable at the state, county, and neighborhood levels and developed in partnership with academic researchers, community groups and members, and other key stakeholders (see Chapter 2 for additional discussion). Some of this work is already underway,¹⁰ and the health equity coordinating entity from Recommendation 1 could facilitate these efforts.

There has been an increasing level of understanding of and attention to the SDOH within public insurance and healthcare programs, including Medicare, Medicaid, the Children’s Health Insurance Program, veteran’s healthcare, and federally qualified health centers. Measuring and addressing the SDOH in healthcare is important (NASEM, 2019). However, SDOH has been conflated with individual “social needs,” including among people working within the health care system (Green and Zook, 2019). Public insurance and health care programs are increasing their ability to address individual patient social needs, which is a positive development (NASEM, 2019). However, the upstream drivers of the SDOH operate above and beyond individuals and cannot be addressed by merely attending to the resulting social and health needs downstream. The use of 1115 waivers, Medicaid payment reforms, accountable care organizations, and others (see Chapter 5 for more information) is important but does not fundamentally address the primary upstream drivers of socioeconomic and health inequities. Federal health care programs may not be the most effective governmental area to

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¹⁰ See, for example, https://hdpulse.nimhd.nih.gov/data-portal/home (accessed May 29, 2023).

address the fundamental causes of social, economic, environmental, housing, and health inequities.

Budget Needs

Oversampling and targeted data collection are admittedly costly. However, identifying health, socioeconomic, and environmental inequities that negatively affect outcomes for minoritized groups across the life span is essential for identifying solutions to achieve health equity goals. A classic example of this cost–benefit argument is seen in the prevalence of chronic noncommunicable diseases (NCDs) among AIAN, NHPI, and Southeast Asian populations. Avoiding many NCDs or minimizing their impacts can be achieved through screening, early diagnosis, and health interventions. Without reliable information on NCD clusters, interventions cannot be targeted, with consequences that include increased medical costs, increased emergency room visits, medication compliance, surgical interventions, and the costs of lifelong disability. High-quality, accurate, representative, and reliable data will ensure equitable access to health care and effective planning to address populations with special needs. Furthermore, as discussed in Chapter 2 and Recommendation 7, context on social factors when interpreting racial and ethnic health inequities is crucial to understand the multiple levels of influence that impact health-related outcomes (such as social, demographic, economic, educational, housing, environmental, political, and legal indicators).

Recommendation 8: Congress should increase funding for federal agencies responsible for data collection on social determinants of health measures to provide information that leads to a better understanding of the correlation between the social environment and individual health outcomes.

These data will more accurately identify the specific needs of underserved populations and improve overall equity in health and socioeconomic outcomes by identifying where policy change or interventions are needed to inform government investments to advance health equity. In the immediate term, increased funding is especially needed for the following:

• The Census Bureau, the Centers for Disease Control and Prevention, and the National Center for Health Statistics to collect relevant, high-quality, accurate, nationally representative data to monitor the health and nutritional status of the total AIAN and NHPI populations and provide comparable statistics to larger

• racial and ethnic populations according to the revised OMB minimum categories for data on race and ethnicity.
• A permanent budget for ACS. A continuous and national survey, it was introduced in 2010 to replace the long form¹¹ for the decennial census (which had important data on important social and economic factors) so that these critically important data could be more timely and useful. ACS is the most comprehensive, robust, and current source of information on social, economic, housing, and demographic data on large and small communities. Census-guided federal spending uses ACS data to inform spending on government services, other stakeholders also use it (e.g., businesses, local planners, and state/local officials). However, ACS has documented operational challenges (The Census Project, 2022) that have led to delays in data release¹² and reliability (partly due to declining response rates and therefore data stability and reliability). This is in part due to delayed investments (the budget has not increased in several years) to allow for innovation to improve response rates and modernization.

However, other funding will also be needed to improve data systems to advance health equity. For example, funds need to be dedicated to conduct a second iteration of the NHPI NHIS in 2024. It was introduced in 2014 and added a wealth of baseline data. Like NHIS, which is conducted annually to monitor the health of the U.S. population since 1957, follow-ups of the NHPI NHIS would provide useful nationally representative evidence to inform policy and intervention programs to address disparities. In addition, inclusion of a robust sample of the NHPI population in the National Health and Nutrition Examination Survey is vital to assessing their health and nutritional status and biomedical health information, which is nonexistent.

Equitable Data Working Group

In April 2022, the Equitable Data Working Group (established under EO 13985) developed a report with recommendations for improvements in data equity, including the areas covered in Recommendations 5 and 6. The report was delivered in April 2022 to the assistant to the president for domestic policy and cochaired by senior leadership in OMB and the Office

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¹¹ The long-form questionnaire includes the same six population questions and one housing question that are on the Census 2000 short form, plus 26 additional population questions and 20 additional housing questions (Census Bureau, 2021b).

¹² Data quality challenges prevented the Census Bureau from releasing standard 2020 ACS 1-year estimates in 2021, and the 2016–2020 ACS 5-year estimates were delayed until March 2022 (Census Bureau, 2021a)

of Science and Technology Policy (OSTP) (Equitable Data Working Group, 2022). That report identified inadequacies in existing federal data collection programs, policies, and infrastructure across agencies (see Chapter 2 for more information). Since then, OSTP has also worked with federal interagency working groups to ensure timely and effective implementation of policies, programs, practices, and investments, to ensure progress on data equity. To ensure that this important work is enduring, the committee recommends:

Recommendation 9: The president of the United States should convert the Equitable Data Working Group, currently coordinated between the Office of Management and Budget (OMB) and the Office of Science and Technology Policy, into an Office of Data Equity under OMB with representation from the Domestic Policy Council, with an emphasis on small and underrepresented populations and with a scientific and community advisory commission, to achieve data equity in a manner that is coordinated across agencies and informed by scientific and community expertise.

Although the Equitable Data Working Group has made significant progress in identifying data barriers to racial equity and solutions to overcome them, it is temporary by design. In addition, federal agency working groups do not typically have a scientific or community advisory commission to provide guidance. To make this work more enduring, and benefit from the guidance of scientific and community experts, the federal government should make interagency coordination on data equity a permanent feature across statistical agencies. By situating the Office of Data Equity under OMB, the federal government will be able to ensure cross-agency coordination and collaboration on data improvements that advance health equity in all federal agencies and policies.

Action 4: Improve Federal Accountability, Tools, and Support Toward a Government That Advances Optimal Health for Everyone

Although states and other levels of government need to tailor their health equity efforts to the needs of their populations, they need the federal-level tools and support to do so. Often, politics can stand in the way of or stall good policy, so processes and guardrails need to support state, local, tribal, and territorial needs. For example, guidance that has been vetted for health equity effects at the federal level needs to be in place to implement policies, access requirements, and set expectations. Accountability mechanisms and processes can play a vital role in driving progress for health equity and require engaging with multiple diverse actors using dynamic accountability

processes. The committee provides recommendations related to federal accountability, tools, and support to advance optimal health for everyone. However, aspects of Recommendations 1–3 will also advance accountability and could work hand-in-hand with the recommendations provided here.

Program Implementation and Access

Chapters 3–7 pointed to numerous examples of barriers around implementation and access to federal programs that exacerbate inequities. Administrative burden—the challenges of accessing a public benefit (Burden et al., 2012)—is one example of an access barrier. This can include time spent on applications and paperwork and navigating systems, verifying eligibility, and navigating web interfaces. The 2021 OMB report notes that these administrative burdens do not fall equally on all individuals and groups, which leads to inequitable underuse of supportive services and programs for the populations most in need (Ashley et al., 2022). OMB pointed out that a fundamental “leading practice” that needs to be scaled government-wide is the “completion of administrative burden audits that can identify points resulting in drop-off, and in particular, increased drop-off among sub-groups” (OMB, 2021, p. 21). Another barrier is how programs are implemented; state implementation can vary, which can sometimes lead to people having access to different programs based on where they live. For example, this variation has occurred in Medicaid expansion (see Chapter 5) and participation in social benefits programs, such as SNAP (see Chapter 3).

Equitable implementation supports government efficiency and effectiveness and can improve outcomes for all and decrease inequities across populations. Implementation of this recommendation should take into account

the unique challenges in rural areas and for Tribal Nations. Although implementation is not dependent on Recommendation 3, it could be one of the processes for that effort. The goal of this recommendation is to deliver federal programs and services to those who need it for all SDOH—where a person lives in the United States or its territories should not impact access. Inequitable access contributes to racial, ethnic, and tribal inequities. It is beyond the scope of this committee’s work to recommend the specific action steps; however, it provides some of the many examples discussed in the report related to implementation and access in Chapters 3–7. This recommendation builds on work underway by federal agencies to identify mechanisms to reduce administrative burden for underserved communities (The White House, 2021a, 2023). To enable agencies to leverage the full extent of their authorities, additional funding may be needed—for example, for enforcement of civil rights protections.

When implementing this recommendation, federal agencies should consider effective approaches across sectors (e.g., housing, transportation, environment), as well as existing authority to enforce civil rights provisions that are not currently prioritized and enforced. For example, the Fair Housing Act requires that grantees take steps to affirmatively further fair housing. Equality directives, a civil rights regulation, are used in regulatory frameworks for federal transit funding and function “by placing positive duties on state actors to promote equality and inclusion” (Amri, 2017). This places the affirmative requirements on state and local grantees when using federal funds and uses “ex ante” regulatory power rather than “ex post” court enforcement (that is, equality directives use regulatory rather than judiciary power). Even without express statutory language establishing affirmative obligations, existing law offers underpinnings for an obligation to affirmatively further health equity. For example, antidiscrimination legislation (Title VI of the Civil Rights Act, ACA Section 1557, and the Americans with Disabilities Act) offers legal authority for a health-focused equality directive; legal and regulatory frameworks relating to tax exemption and the federal government’s funding of Medicare and Medicaid are models for how such an equality directive might be implemented.

Streamlining eligibility criteria variation may be difficult given the “block” of funding by state and variation in need for nonentitlement programs (e.g., child care subsidies eligibility vary greatly due to different demand volume by state); however, the federal government could standardize the approach for eligibility criteria, conditions of participation related to administrative burden, and enrollment by streaming eligibility and enrollment processes with coordination across federal programs. This aligns with the health equity assessments and equity plans undertaken by EO 13985 and Finding 2 of an OMB report (“administrative burden exacerbates inequity”) (OMB, 2021; The White House, n.d.). To address this

recommendation and the goal of EO 13985 to “expand opportunities for meaningful stakeholder engagement,” the federal government could require community-involved processes. One area to review is the Administrative Procedure Act¹³ regarding public comment. This is more accessible to academics and interest groups with resources and less accessible to communities. The federal movement could also include incentives to states that include accessible, meaningful community involvement processes in laws and implementation.

Implementing this recommendation could also reduce participation churn in federal programs administered by states; in social benefits programs, such as SNAP and Medicaid, this is when otherwise eligible participants fail to recertify and are removed from the program, but subsequently reapply as a new case within a short period, such as in a few months or a year. Churn drives up administrative costs, because new cases are more expensive to process than recertifications, and reduces program effectiveness when families lose benefits due to administrative burdens. The federal government could monitor rates of churn and set performance standards. For example:

• SNAP. Administrative burdens have been shown to reduce recertification among eligible individuals, and reforms that simplify recertification can increase retention (see Chapter 3). Federal policy could authorize, without the need for states to apply for waivers, administrative procedures that make it easier to enroll in and stay on SNAP. These included the extension of certification periods, reduced paperwork and interview burdens, telephonic signatures, and electronic filing of paperwork.
• Medicaid. Federal policy could allow (without a waiver) or mandate that states permanently maintain continuous enrollment, specifying that all individuals enrolled in Medicaid and/or the Children’s Health Insurance Program are guaranteed 12 months of coverage regardless of what happens to income during those 12 months.¹⁴ Under this policy, some people would get Medicaid for a part of the year where they are no longer eligible, but many people who are eligible but not enrolled would be covered. Such a

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¹³ Pub. L. 79–404, 60 Stat. 237 (1946).

¹⁴ New York and Montana have such a continuous eligibility policy for adults, allowed via waiver under the Medicaid law. In an evaluation of New York’s 12-month continuous eligibility policy for adults, Liu and coauthors (2021) found that it increased Medicaid coverage duration by 8.2 percent in the population enrolled through the ACA Marketplace and 4.2 percent among those enrolled through local social service departments. Medicaid costs increased just 2.6 percent and 3.1 percent, respectively, as some of the increased duration was offset by lower per-member monthly costs.

• policy would also help address health inequities and lower administrative costs associated with constantly checking eligibility and processing claimants as they churn on and off the rolls. For children, multiyear continuous eligibility could be allowed or mandated.¹⁵

As described in Chapters 3, 4, and 5, participation rates vary widely overall and across groups in social benefits programs, such as SNAP, Special Supplemental Nutrition Program for Women, Infants and Children (WIC), the National School Lunch Program, and Medicaid. Administrative burdens contribute to incomplete participation among eligible populations. The federal government could monitor participation rates and set performance standards where it is not already doing so. To increase transparency, state-by-state performance could be published. For example:

• WIC. Federal policy makers could establish performance metrics for cross-enrollment in WIC of eligible SNAP and Medicaid participants.
• SNAP. Although overall participation is high, fewer than half of eligible older adults participate. The Elderly Simplified Application Project is a federal demonstration project that allows streamlined administrative policies for elderly SNAP participants and has been shown to increase participation. Mandating this program or allowing it without a waiver could advance health equity.
• Medicaid. Even small premiums discourage Medicaid participation. Barring states from requiring premiums or copayments for Medicaid, which discourage participation, would increase coverage, as would increasing customer service focused on helping people sign up for and maintain Medicaid.

An existing tool that aims to reduce administrative burden for children is Express Lane Eligibility, which intends to facilitate enrollment in health coverage (OIG, 2016) by permitting “states to rely on findings, for things like income, household size, or other factors of eligibility from another program designated as an express lane agency” (Medicaid.gov, 2021). Express Lane agencies may include SNAP, Temporary Assistance for Needy Families, Head Start, National School Lunch Program, and WIC. “A state may also use information from state income tax data to identify children in families that might qualify and so that families do not have to submit income information” (Medicaid.gov, 2021).

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¹⁵ Oregon received a waiver from CMS to provide multiyear continuous eligibility for children in October 2022, and Washington and California are seeking such a waiver. States are already able to provide 12 months of continuous coverage for children without a waiver.

Eligibility for Federal Program and Services

Access to federally funded programs for everyone who meets requirements is essential to move toward health equity. For example, formerly incarcerated people and immigrants have restricted access to SNAP, WIC, and the Earned Income Tax Credit (see Chapter 3), and those who are incarcerated are not eligible for Medicaid benefits; immigrants are not eligible for Medicaid until they have completed 5 years of legal residence in the United States (see Chapter 5). To increase access to federally funded programs to those who are categorically excluded, the committee recommends:

Recommendation 11: The president of the United States should direct the Office of Management and Budget to review federal programs that exclude specific populations, such as immigrants and those with a criminal record and, in some cases, currently incarcerated people (e.g., Medicaid coverage), to assess the rationale and implications for equity of excluding these populations, including potential impacts on their families and communities. A report on the findings and suggested changes (when applicable) should be made publicly available.

For each excluded category in federally funded programs, both the pros and cons, including cost and health equity implications, should be weighed. An example of an eligibility barrier being removed is the Pell Grants program. In 2020, the Higher Education Act of 1965 and the Free Application for Federal Student Aid program reinstated Pell Grant access for incarcerated people enrolled in qualifying prison education programs (see Chapter 4). This is a promising example of how removing erected barriers to access for specific populations can address unequal access to federal programs that are linked to SDOH and health inequities. This recommendation aligns with the Second Chance Opportunities for Formerly Incarcerated Persons effort, announced in April 2022, which includes a proposal to establish a special Medicare enrollment period of 6 months postrelease for people who missed an enrollment period while incarcerated, which would reduce potential gaps in coverage and late enrollment penalties and expand access (The White House, 2022b).

Advance American Indian and Alaska Native Health Equity

Although the committee was expansive in its attempt to incorporate all racial, ethnic, and tribal communities impacted by federal policies, it paid special attention to AIAN communities who are often overlooked in large national reports. Some recent positive steps forward have occurred, but the committee urges further and bigger strides be urgently taken to make

up for the gaps and losses in health and health equity that AIAN people experienced for hundreds of years.

As detailed in Chapters 2, 5, 6, and 7, the United States has a complex relationship with the AIAN population. The traumas that have unfolded over generations have resulted in untold cumulative harm, the effects of which are still felt today. Unlike other racial and ethnic groups in the United States, AIAN Tribal Nations are sovereign governments and have legal rights via a trust responsibility that has not been fully upheld. For example, federal responsibility for AIAN health care was codified in the Snyder Act of 1921 and the Indian Health Care Improvement Act of 1976, which form the legislative authority for the Indian Health Service (IHS). Funding for IHS is the lowest of any federal per capita health program dollars as compared to Medicare, Medicaid, Veterans Affairs, and for federal prisoners (see Chapter 5 for a detailed discussion).

Community voice Through most administrations, whether Democrat or Republican, few AIAN voices have been in leadership or influence in the executive branch. In one notable step forward, on September 22, 2022, OMB named Elizabeth Carr as Tribal Advisor to the Director. As stated in its press release,

The appointments of Deb Haaland (Laguna Pueblo) as the Secretary of the Department of the Interior, Chief Marilyn Malerba (Mohegan) as U.S. Treasurer, and Carr (Sault Ste. Marie Tribe of Chippewa Indians) bring welcomed and previously absent AIAN perspectives to these areas of policy and governmental concern. Secretary Haaland created the Federal Indian Boarding School Initiative, and she and Secretary Vilsack (Department of Agriculture) have signed off on a number of costewardship agreements (per Joint Secretarial Order 3403 on Fulfilling the Trust Responsibility to Indian Tribes in the Stewardship of Federal Lands and Waters they launched in 2021) (Bendery, 2023). These appointments are a source of confidence and furtherance of reconciliation, which happens when space is made in the usual dominant culture structures to purposively allow Indigenization, which is adding Indigenous people, thought, and actions to areas that have been completely devoid of these. However, in the realm of achieving AIAN health equity, further adjustments are necessary to close the inequity chasm.

Another appointment is necessary to advance health equity—the elevation of the Director of IHS to an Assistant Secretary of HHS. This appointment

has been introduced in legislation by the Senate Committee on Indian Affairs (S. Rept. 106-148) to “to further the unique government-to-government relationship between Indian tribes and the United States, facilitate advocacy for the development of Indian health policy, and promote consultation on matters related to Indian health” (Congress.gov, 1999), which argued that this stature was needed for IHS because of the failure to incorporate tribal recommendations in final budget requests and that because IHS is the largest direct health care provider in HHS, it should answer directly to the HHS Secretary to ensure that tribes’ needs are addressed. Establishing an Assistant Secretary of IHS will ensure there is a senior official in future administrations who is knowledgeable about the U.S. legal and moral obligations to AIAN people and the mission of IHS and has the status to advocate within HHS and OMB. Similar legislation was introduced in 2003 by Senator McCain (S.558) (Congress.gov, 2003).

Similarly, because of the special government-to-government relationship and the historical lack of voice for AIAN people, representation is needed in the House and Senate. In 1946, a legislative reorganization act abolished both the House and Senate Committees on Indian Affairs; in 1977, the Senate reestablished its committee.¹⁶ It has jurisdiction to study the unique problems of AIAN and Native Hawaiian peoples and propose legislation to alleviate them. These issues include Indian education, economic development, land management, trust responsibilities, health care, and claims against the United States. In addition, legislation proposed by members of the Senate that pertains specifically to AIAN or Native Hawaiians is under the jurisdiction of the Committee (Committee on Indian Affairs, n.d.-b). The committee has given voice to the AIAN community and helped to pass legislation to advance AIAN priorities (Committee on Indian Affairs, n.d.-a). A recent striking example is in the Consolidated Appropriations Act, 2023 (H.R. 2617). On September 30, 2022, six members of the Senate Committee on Indian Affairs sent a letter to House leadership, Senate leadership, and the Appropriations Committee urging that congressional leadership include advance appropriations for IHS for FY2024 in the final FY2023 omnibus bill to forestall temporary lapses in appropriations and continuing resolutions. The letter emphasized that during the 2019 government shutdown, “IHS was the only federal health care entity forced to operate without appropriations, causing some Urban Indian Organizations to close their doors completely. This funding disruption resulted in some health providers being unable to provide patients with critical care

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¹⁶ The committee was created in 1977 as a temporary Select Committee (February 4, 1977, S. Res. 4, Section 105, 95th Congress, 1st Sess. [1977], as amended). It was to disband at the close of the 95th Congress, but following several term extensions, the Senate voted to make it permanent on June 6, 1984.

and medication” (Raimondi, 2022). In a groundbreaking change, H.R. 2617 authorized $6.96 billion for IHS for FY2023, a $360 million increase above the FY2022 enacted level; advance appropriations for IHS totaling $5.13 billion for FY2024; and $90.42 million for urban Indian health for FY2023. However, the act only assures advanced appropriations for 2 years, and it is not clear whether this will continue past 2024. Tribes, tribal organizations, and others have advocated for advance appropriations for IHS for over a decade. The support by the Senate Indian Affairs Committee gave this work a platform and community voice (National Indian Health Board, n.d.). A congressional Committee on Indian Affairs is needed to further raise community voice.

Although these actions will not address all barriers to health equity for the AIAN population, together, they will give more voice and prominence to AIAN people, which will help advance health equity for a population that is inadequately resourced and ignored. Other government agencies support AIAN health and address elements of the SDOH. For example, the Bureau of Indian Affairs’ mission is to enhance quality of life, promote economic opportunity, and carry out the responsibility to protect and improve the trust assets of AIAN people. It provides resources that can be used to address many SDOH, including education, disaster relief, Indian child welfare, tribal government, Indian self-determination, and reservation roads programs. Just as the committee assessed whether IHS was meeting the needs of AIAN people, a similar assessment is needed for the Bureau of Indian Affairs to assure it is fully resourced to meet its trust obligations.

Health Care Access

Chapter 5 provides an overview of the U.S. health care system and describes how it helps to advance health equity and areas for improvement.

One major aspect is access—this includes insurance coverage and the availability of and access to culturally appropriate, high-quality care, including preventive care, primary care, specialist care, chronic disease management, dental and vision care, mental health treatment, and emergency services. Health care access is an essential element of promoting health equity. Furthermore, affordable health care is necessary for quality care and has been shown to improve health outcomes. Lack of insurance access leads to adverse health outcomes and economic effects that exacerbate racial and ethnic inequities. However, health insurance is just one piece of the equation.

Recommendation 13: The Departments of Health and Human Services, Defense, Veterans Affairs, Homeland Security, and Justice, as federal government purchasers and direct providers of health care, should undertake strategies to achieve equitable access to health care across the life span for the individuals and families they serve in every community. These strategies should prioritize access to effective, comprehensive, affordable, accessible, timely, respectful, and culturally appropriate care that addresses equity in the navigation of health care. While these strategies have a greater chance of success when everyone has adequate health insurance, there are ways the executive branch can improve and reinforce access to care for the adequately insured, the underinsured, and the uninsured.

There are a multitude of approaches that federal agencies can use to achieve this outcome, including ensuring access to health insurance coverage, primary care, enhancing inclusivity of language and communication/health literacy, engendering trust, and other innovative approaches. Although it is not a panacea for health care access, access to insurance remains critical for all U.S. residents regardless of immigration status, state of residency, or employment status. Example mechanisms to increase access are persuading Medicaid nonexpansion states to adopt federal financial support for their uninsured residents and federal directed strategies, such as expanding the Health Resources and Services Administration portal used during the COVID-19 pandemic. The committee notes AIAN people have a legal right to quality physician-led health care under their treaty and trust responsibility. Further integration across the federal health system will also help achieve this recommendation—implementing Recommendation 1 would facilitate the needed integration (Khullar and Chokshi, 2016).

CALL TO ACTION

This report points to both the positive and negative impacts federal policy has had on racial, ethnic, and tribal health equity. Although federal policy has played an important role in correcting past harms and advancing equity, substantial opportunities remain. The four action areas outlined are

connected and impact each other. For example, without data that are accurate and representative of a population, it is more difficult to identify where resources and tools are needed and policy efforts should be focused. The lack of community voice and expertise in policy development, even with the best of intentions, can lead to omissions and unintended consequences. Vigilance for this in implemented policies is an essential equity component that needs to be built into feedback monitoring loops and measured in equity audits, as per committee recommendations. Furthermore, as the federal government continues its path to advance health equity, it should keep front and center this report’s guiding principles:

1. Health is more than physical and mental well-being—it also includes well-being in social, economic, and other factors, all of which are necessary for human flourishing;
2. All federal policies have the potential to affect population health;
3. Evidence is informed by quantitative, qualitative, and community sources (all of which should be equally valued);
4. Federal policies should center health equity; and
5. To advance health equity, structural and systems change are needed.

Addressing the recommendations in this report will bring the federal government past acknowledging past harms (which is needed but not sufficient) and their impacts on racial, ethnic, and tribal health inequities, to concerted action to expedite the elimination of inequities. It will also improve the circumstances in which people, families, and communities live, play, work, pray, and age so that all people living in the United States have the opportunity to meet their full health potential.

Conclusion 8-2: Federal policy can play a key role in eliminating health inequities by collecting and employing high-quality and accurate data, doing a better job of including and empowering communities that are most affected, and coordinating and holding those who implement policy accountable.

REFERENCES

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