Collecting Data on Sexual Orientation and Gender Identity: A Promising Practice for Improving Population Health and Advancing Health Equity

The year 2024 marks 1 year since the US Department of Health and Human Services (HHS) published its Sexual Orientation and Gender Identity (SOGI) Data Action Plan. ¹ The HHS SOGI Data Action Plan was developed in response to the Federal Evidence Agenda on LGBTQI+ Equity, set in motion by the June 2022 Executive Order 14075 on Advancing Equality for Lesbian, Gay, Bisexual, Queer, and Intersex (LGBTQI+) Individuals.^2,3 The HHS SOGI Data Action Plan was developed to create a comprehensive strategy to advance precision public health by collecting demographic data on SOGI measures. By executing this plan, HHS aims to increase access to accurate SOGI data and improve the health and well-being of all people, including people in LGBTQI+ populations. ¹

LGBTQI+ populations experience numerous physical and mental health disparities caused by discrimination, barriers to care, and inequitable access to health care. ⁴ Although LGBTQI+ adults comprise approximately 5.5% (13.9 million) of the US population, historically SOGI data have not been collected in federal data measurement instruments. ⁵ However, collecting these data is vital to understand the lived experiences and health disparities that affect LGBTQI+ populations. Advancing the collection of SOGI data in nationally representative surveys and administrative data instruments assists HHS agencies in understanding the health and well-being challenges facing LGBTQI+ populations in the United States. ² The HHS SOGI Data Action Plan recommends collecting data on SOGI characteristics whenever data on other demographic characteristics are collected, allowing for cross-tabulation of data across demographic variables, such as race or age. For example, national data, including federal data from the Centers for Disease Control and Prevention (CDC) and the American Community Survey, on the population size of gay and bisexual men and other men who have sex with men have informed mathematical models of HIV, mpox, and sexually transmitted infections. These data have also been vital in assessing racial and ethnic disparities in mpox cases and vaccination among men in the United States.^6-11 Developing an intersectional understanding of the health inequities that affect LGBTQI+ populations requires the collection and analysis of SOGI data.

Increasing SOGI data collection throughout HHS will help build the evidence base needed to develop and implement evidence-based policy. SOGI data could be used to identify how LGBTQI+ people are being served by federal programs and where improvements are needed. ⁴ Population-level data on LGBTQI+ populations could allow the practice of precision public health to reduce health disparities among LGBTQI+ populations through targeted health interventions and policies.^1,12 Collection of SOGI data can also promote the health and well-being of the nation overall, not just for LGBTQI+ populations. For example, analysis of 2023 Youth Risk Behavior Survey data identified that transgender and questioning high school students have higher rates of violence, poor mental health, suicidal thoughts and behaviors, school connectedness, and unstable housing compared with cisgender high school students. ¹³ These data could allow for resources to be directed toward the development of inclusive and supportive school environments for the health and well-being of all students, including transgender and questioning students. Access to nationally representative data would vastly improve the ability of HHS to design evidence-based policy and programs and improve the health and well-being of LGBTQI+ populations.

In the first year of the HHS SOGI Data Action Plan, all HHS divisions reviewed their data instruments and started integrating SOGI data collection measures, or improved SOGI data collection measures, into their data instruments. ¹⁴ Including SOGI data collection measures in HHS data instruments, such as Medicare Parts C and D enrollment applications, supports the Centers for Medicare & Medicaid Services in assessing the LGBTQI+ population’s access to health care and health care coverage. SOGI data measures are now included as features of public health surveillance systems, such as CDC’s minimum standards for case reports, and in major public health surveys, such as the National Health and Nutrition Examination Survey, which could help target public health interventions to LGBTQI+ populations most in need. The Assistant Secretary for Technology Policy and Office of the National Coordinator for Health Information Technology also finalized SOGI data elements in the US Core Data for Interoperability, which improves opportunities for patient-centered care. ¹⁵ The addition of these data elements to electronic health records could help medical providers in their provision of preventive services and a more inclusive and affirming patient experience. Collecting SOGI data is a promising practice to advance health equity and precision public health.

Whenever personally identifiable information is collected, misuse is a concern. In most HHS data systems, SOGI data are collected in the aggregate and are not tied to personally identifiable information. In a small number of HHS data systems, SOGI data are collected along with personally identifiable information, and HHS has strong confidentiality requirements to safeguard these sensitive data. Cultivating privacy and confidentiality is crucial when collecting SOGI data to build and maintain trust between HHS and the public.

The advancement of SOGI data collection requires addressing knowledge gaps on best practices for SOGI data collection. Further research is needed to develop best practices for collecting SOGI data by proxy and by intersex status, from young people, and in languages other than English. ² HHS supports the work needed to address research gaps on best practices for SOGI data collection.

SOGI data collection is a promising practice to understand and address the unique health disparities that affect LGBTQI+ populations. SOGI data can be used to build the evidence base on health disparities and ensure that solutions to worsened health outcomes can be developed with precision. This type of precision public health will advance the health and well-being of all people in the United States.