Advancing President Biden’s Equity Agenda — Lessons from Disparities Work | NEJM – nejm.org
As of January 20, 2021, the United States has a national policy aimed at addressing systemic racism. On his first day in office, President Joe Biden signed an executive order on advancing racial equity and supporting underserved communities. Under the order, as part of a “whole-of-government equity agenda,” each federal agency must assess whether its programs and policies perpetuate systemic barriers that affect people of color and other underserved groups.1 In health care, efforts to reduce inequities have typically targeted individual clinicians without holding institutions or systems accountable.2 Biden’s executive order presents an opportunity to implement lessons from health disparities research that target systemic racism.
The new executive order revokes former President Donald Trump’s September 2020 executive order regarding diversity training. That policy prevented federal agencies and their contractors from holding diversity-and-inclusion training programs based on concepts that the Trump administration considered to represent race-based “stereotyping” or “scapegoating,” such as White privilege and systemic racism. Federally funded entities that didn’t comply with Trump’s order would have been subject to fines, lawsuits, and contract terminations. Hundreds of organizations — including the American Medical Association, the American Nurses Association, and the American Hospital Association — denounced the policy for impeding efforts to fight discrimination. On December 22, 2020, the U.S. District Court for the Northern District of California issued a nationwide preliminary injunction preventing the Office of Federal Contract Compliance Programs from enforcing the executive order.
Biden’s executive order puts forth a definition of equity that could be seen as somewhat self-contradictory. According to the order, equity refers to “the consistent and systematic fair, just, and impartial treatment of all individuals, including individuals who belong to underserved communities that have been denied such treatment, such as Black, Latino, and Indigenous and Native American persons, Asian Americans and Pacific Islanders and other persons of color; members of religious minorities; lesbian, gay, bisexual, transgender, and queer (LGBTQ+) persons; persons with disabilities; persons who live in rural areas; and persons otherwise adversely affected by persistent poverty or inequality.”1 The first part of this definition emphasizes equality for all people, whereas the second part calls attention to specific underserved groups. To promote equity, the Biden administration should distribute resources differentially in order to benefit groups that are persistently disadvantaged.
The order delineates tasks for senior government officials. The U.S. Domestic Policy Council, for example, must coordinate with federal agencies to identify communities that the federal government has underserved and create policies supporting equity. The director of the Office of Management and Budget and agency leaders must conduct assessments to classify barriers to obtaining access to federal benefits, services, and contracts and measure equity on the basis of race, ethnicity, religion, income, geography, gender identity, sexual orientation, and disability. They must also study strategies for increasing investment in underserved communities. Since some federal data sets aren’t disaggregated by variables such as race, ethnicity, gender, disability, income, and veteran status, an Interagency Working Group on Equitable Data (the Data Working Group) must collaborate with the Domestic Policy Council to identify deficiencies in data collection and potential solutions.
Moving forward, the Biden administration could take several steps to enhance the effectiveness of the executive order. First, it could implement a single data-management system with updated variables throughout federal agencies. The Agency for Healthcare Research and Quality publishes an annual disparities report under congressional mandate. Reporting for its Healthcare Cost and Utilization Project has relied on a method that combines race and ethnicity into one variable using definitions from 1977; when states report Hispanic ethnicity separately from race, the analysis prioritizes Hispanic ethnicity over race categories to enable uniform coding. The Office of Minority Health, however, advises organizations to collect race and ethnicity data separately as part of its guidance on advancing the National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care. Both agencies use binary options for gender in their surveys and don’t permit people to select multiple options for sexual orientation, which would be in keeping with the idea that sexuality is fluid. Updating variables related to identity would fulfill the Data Working Group’s responsibility to refine data in order to measure equity and capture diversity.1
Second, the administration could use variable disaggregation to model the ways in which various groups face disadvantages based on intersectional identities, or interconnected affiliations with various groups defined by race, ethnicity, gender identity, sexual orientation, class, or other factors that contribute to privilege and power or to discrimination and disadvantage. Because of limited sample sizes, disparities researchers typically present outcomes using univariate analyses that include race, ethnicity, or gender, without accounting for within-group or intersectional differences.3 Studies are often underpowered to detect interaction effects, but federal data sets with nationally representative samples have sufficient power to reveal interactions. Conducting multivariate analyses that include race, ethnicity, gender, sexual orientation, and income — and examining interactions among these variables — could capture lived experiences more accurately than univariate analyses. Black homosexual people face different barriers to health care than Black heterosexual people, for example, and equity assessments should explore barriers based on intersectionality, not just single identity variables.
Third, the administration’s equity agenda should align with contemporary understandings of systemic racism, which is conceptualized as the way in which interconnected social institutions reinforce discriminatory beliefs, practices, and distribution of resources. Researchers have proposed various definitions for systemic racism, but they all point to the ways that societies discriminate against underserved populations by means of inequitable and mutually reinforcing systems in the housing, education, employment, economic, health care, and criminal-justice sectors.2 For years, scholars in law, medicine, public health, and the social sciences have described associations between increased housing segregation among minorities and higher policing activity, more criminal charges, and worse health outcomes, for example.4
An equity agenda can uncover interactions among barriers in various agencies and social sectors. Interagency coordination and data sharing could reveal patterns of clusters of inequities, which could inform the development of new interventions. The federal government could adopt cross-sector approaches, such as reforming drug and immigration policies to reduce incarceration and improve access to health services.2 It could regularly hold institutions and systems accountable through Section 1557 of the Affordable Care Act, which prevents federally funded entities from discriminating against people on the basis of age, color, disability, national origin, race, or sex.5 Any health care provider or state agency that receives funding from the Children’s Health Insurance Program, Medicaid, or Medicare would then be subject to legal action if it discriminated against people from underserved communities.
Fourth, the administration should engage with the public. The executive order directs agency leaders to communicate with community organizations and civil rights groups.1 But it doesn’t specify plans for outreach to direct service providers or state and local officials who implement federal programs. Ignoring the input of these players would be a missed opportunity to learn from the people and organizations that provide federal services, benefits, and contracts. Nor does the order mention whether the results of equity assessments will be made public. Disparities researchers use methods such as community-based participatory research to involve various stakeholders; such approaches are critical for building trust, setting priorities, and fostering support for reforms. The National Institutes of Health involves members of the public in study sections and advisory councils, a mechanism that could be expanded to other agencies.
Biden’s equity agenda will be effective only if it is inclusive at every step. To achieve this goal, the government can democratize data collection and analysis, hold agencies accountable by publicly disseminating findings, and develop cross-sector interventions to break cycles of systemic inequity. These strategies align with health disparities work focused on developing trust among underserved communities. According to the executive order, “advancing equity requires a systematic approach to embedding fairness in decision-making processes.”1 The government should strive for transparent processes while implementing evidence-based policies against systemic racism.