For decades, advocates, including NHeLP, have sought broader and more comprehensive demographic data collection to advance health equity and reduce discrimination. Current federal standards governing collection of individuals’ race, ethnicity, and preferred language leave much to be desired. For example, individuals who are Middle Eastern and North African (MENA) can seldom identify as such on government forms and are instead frequently inaccurately categorized as “White.”
Lack of questions on sexual orientation, gender identity, and especially on variations in sex characteristics (e.g. intersex status) means that the health of Lesbian, Gay, Bisexual, Transgender, Queer, and Intersex (LGBTQI+) populations is not well-documented or well-understood. Questions on disability for demographic purposes—that is, questions that identify different populations of people with disabilities to monitor outcomes and access to care, as opposed to eligibility for certain programs—remain the rarest of all.
Recent efforts by the Biden-Harris Administration may change this outlook. This January, the White House Subcommittee on Equitable Data produced its Federal Evidence Agenda on LGBTQI+ Equity, which for the first time ever spells out actions the federal government will take to systematically document the experiences of LGBTQI+ individuals in federal programs. The Subcommittee put forth a number of important findings on data collection, including that:
- The federal government has enough resources and information to begin standardizing and collecting LGBTQI+ data on surveys and administrative forms without further delay;
- LGBTQI+ data must be collected wherever other demographic data is collected;
- LGBTQI+ data must be disaggregated to allow visibility for the L, the G, the B, the T, the Q, and the I separately;
- Agencies must establish and implement appropriate data stewardship and privacy practices that account for insufficient, or even hostile, state policy;
- The federal government must create and disseminate training for data collectors on best practices for engaging in data collection, protecting data privacy, and developing public trust; and
- The federal government must ensure that data remains accessible to researchers and data summaries/explainers are regularly provided to the public.
The above findings echo the recommendations that NHeLP has put forth in comments and publications as well as in its recent series Risks and Rewards of Demographic Data Collection: How Effective Data Privacy Can Advance Health Equity.
Also in January, the Office of Management and Budget (OMB) released its much-anticipated proposed revision of Directive No. 15. This Directive governs the standards for maintaining, collecting, and presenting data on race and ethnicity in federal programs. The government uses these standards as a baseline for collecting this data in everything from the Census to federal housing assistance applications to the single, streamlined Marketplace application. These standards have not changed in the nearly thirty years despite the makeup and diversity of the U.S. population having greatly shifted. In its proposed revision, OMB recognizes the need for the standards to reflect changing immigration and migration patterns, updates in language and terminology, as well as disaggregation of underserved populations.
The proposed Directive No. 15 adopts several recommendations long endorsed by advocates and supported by Census Bureau research. It implements an additional response option, Middle Eastern/North African (MENA). Where studied, the experiences of the MENA community demonstrate significant differences in experience and disparities in health, language access, and insurance coverage. Without a separate response option, the experiences of the MENA community remain under-emphasized, and often, collapsed into the “White” racial category, obscured.
The revision also proposes combining race and ethnicity into one question. The current standards require race and ethnicity to be asked in two separate questions as follows:
Are you Hispanic or Latino?
- Yes, Hispanic or Latino
- No, not Hispanic or Latino
What is your race?
- American Indian/Alaska Native
- Asian
- Black or African American
- Native Hawaiian or Other Pacific Islander
- White
The first question confuses many respondents who select “Yes, Hispanic or Latino,” but select none of the options given for race in the second question. Research by the Census Bureau demonstrates that combining race and ethnicity into a single question results in a more accurate count of Latinx-identified individuals, while also allowing those who are multiracial to continue to select all relevant response options for race.
Finally, the proposed revision updates outdated terminology, emphasizes the need to collect multiracial, multiethnic data (“select all that apply”), and plans for guidance on implementing the updated Directive.
While these actions to improve demographic data collection in federal programs will be transformative, these proposals fall short of optimal policy in several significant ways. The Federal Evidence Agenda on LGBTQI+ Equity fails to elevate the need for data on intersex populations to the same degree and with the same urgency as data on other LGBTQ+ populations. OMB should promulgate a policy directive that sets out standards for LGBTQI+ data collection, similar to Directive No. 15, and should ensure that both policy directives are regularly reviewed and revised to reflect the most up-to-date research. Finally, the Administration must make progress on similar measures for demographic data collection on disability status, which are sorely needed to monitor civil rights and work toward full inclusion for people with disabilities.
NHeLP continues to advance its research on methods, uses, and legal strategies for demographic data collection. We urge the Administration, as it seeks to embed equitable data practices throughout government, to implement demographic data collection in federal programs alongside measures that protect individual privacy. Data is a necessary means to the end of health equity. However, data is only effective to this end if its use is restricted to purposes that serve the public as opposed to purposes that expose underserved communities to more discrimination and harm. We look forward to working with the Administration to keep up the momentum for purposeful demographic data collection in this new year.
