Data collection is a common-sense component of identifying and addressing disparities in health and healthcare access, yet demographic data is being stripped from federal surveys and forms at an alarming rate.
The Department of Health and Human Services (HHS) has emphasized the need for better health data to address persistent health disparities for at least forty years, starting with the 1985 Report of the Secretary’s Task Force on Black and Minority Health and the resulting establishment of the Office of Minority Health (OMH) in 1986. OMH is charged with providing national leadership, resources, and coordination to improve the health of people of color and eliminate health disparities. In 2010, the Affordable Care Act directed the Secretary of HHS to promulgate uniform data collection standards for race, ethnicity, sex, primary language, and disability. The resulting HHS guidance acknowledged that “while data alone cannot reduce disparities,” it is foundational to addressing them.
The need for increased health data for LGBTQI+ populations was brought to the fore more recently in a 2020 report by the National Academy of Sciences, Engineering, and Medicine (NASEM), Understanding the Well-Being of LGBTQI+ Populations, which provided a detailed accounting of the physical and mental health disparities experienced by LGBTQI+ population. This report, and a subsequent NASEM report in 2022, underscored the need for consistent, standardized data collection on sexual orientation, gender identity, and intersex status. Two years later, then-President Biden directed all Federal agencies to advance data equity for LGBTQI+ individuals, resulting in HHS’s 2023 Sexual Orientation and Gender Identity (SOGI) Data Action Plan. The stated goal was to improve the health and wellbeing of LGBTQI+ people through accurate data.
Enhanced data provides the opportunity to “compare trends across groups, develop targeted strategies, and evaluate the progress of interventions.” Absent quality demographic data that can be disaggregated within population groups, health disparities can go unnoticed and unaddressed.
Despite the well documented persistence of health disparities, and the essential role that data collection plays in identifying and combatting those disparities, the current Administration’s steady rolling back of progress in the sphere of data collection is happening at an alarming rate. It is not accidental or without design. On President Trump’s first day in office, he rescinded Biden-era executive orders addressing racial equity and support for underserved communities and advancing equality for LGBTQI+ individuals — both of which required enhanced federal data collection including race, ethnicity, and gender.
In another “day one” Executive Order, all executive agencies were directed to revise “forms that require an individual’s sex” to only list “male or female” and to not request information regarding gender identity. Though sexual orientation was not explicitly included in this directive, as data collection related to gender identity disappears so has data related to sexual orientation.
While there has been no parallel (public) explicit directive to remove race and ethnicity from forms or other data-collection vehicles, Trump directed all agencies, departments, and commission heads to terminate all “‘equity’ actions, initiatives, or programs.” The Administration has interpreted attention to remedying disparities — in healthcare or otherwise — as “unlawful diversity, equity, and inclusion” actions. The increasing absence of collection and availability of demographic data, as compelled by federal directives, makes the identification of discrimination and disparities that much more challenging.
The erosion of health data collection efforts cannot be seen in isolation. It is accompanied by the defunding of studies related to Black, Indigenous, and other People of Color (BIPOC) and LGBTQI+ health disparities, the framing of the prior Federal agency Equity Action Plans as “public waste and shameful discrimination,” and the wholesale removal of data and databases that provide the public information on how certain populations are impacted by diseases and other health issues. Thanks to advocates and individual advocacy, some of these efforts have been slowed or reversed, but it is unlikely that efforts by the Administration to curtail and eliminate data collection for BIPOC and LGBTQI+ people will stop. Absent high-quality disaggregated data, identifying health disparities that impact BIPOC and members of the LGBTQI+ community is more challenging – leaving the achievement of health equity an ever more elusive goal.
We recognize that data collection, particularly by the federal government, is not without risks for particularly vulnerable and targeted populations. For example, in the current political climate there are very legitimate concerns regarding the collection of immigration and transgender status. For this reason, demographic questions should remain voluntary and allow for self-identification.
Consistent with our mission, NHeLP has long advocated for more comprehensive voluntary demographic data collection to advance health equity, reduce discrimination, and facilitate the provision of equitable health care. We oppose the removal of voluntary demographic data questions from federal surveys, forms, and other vehicles for data collection. We have submitted comments and joined coalition partners in opposing the removal of voluntary race, ethnicity and sexual orientation and gender identity data fields government data collection. We will continue to advocate for robust data collection as a critical component of identifying and addressing persistent health disparities experienced by communities of color, individuals who are LGBTQI+, and those who are members of multiply historically underserved populations.
