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Sexual Orientation and Gender Identity: Improving Health Equity Through Better Data Collection

June 29, 2021


Pride Month is a celebration by and among individuals and communities of sometimes-hard-won acceptance and affirmation of sexual orientation and gender identity. This month, Network attorneys highlight recent law and policy developments related to health equity, sexual orientation, and gender identity.

Collecting client or patient data on sexual orientation and gender identity (SOGI) can help create a more informed picture about the health of LGBTQ individuals. This information can help providers to better understand client or patient needs and provide relevant and appropriate care, and it can equip researchers, policymakers, and public health professionals to better identify disparities and barriers to care. SOGI data combined with other information like disability status or race and ethnicity can also illustrate the health needs of people from an intersectional perspective, and when combined with data on factors that influence health (like housing and type of employment) and health risk behaviors (like smoking and vaping), it can help identify who is most vulnerable to certain chronic or infectious diseases.

One important source of SOGI data is through health department programs and health-related surveys (often conducted by health departments) that provide nationally representative data, like the Behavioral Risk Factor Surveillance System (BRFSS). However, the BRFSS illustrates one of the barriers to SOGI data collection: flexibility on what questions to include. For example, according to Healthy People 2030, thirty-one states included SOGI questions in the BRFSS in 2016, but only twenty-one states used the standard module on SOGI in 2016. Use of the standard module contributes to a national picture of LGBTQ health and accordingly, Healthy People 2030 has a goal of increasing the number of states that use the standard module.

Another important source of SOGI data, supported by the National Academy of Medicine and The Joint Commission, is through clinical settings and Electronic Health Records (EHR). This is incentivized by the Centers for Medicare & Medicaid Services (CMS) Promoting Interoperability Programs, which supports EHR adoption, implementation, modernization, and demonstration of meaningful use. In 2015, CMS issued a final rule requiring that all electronic record systems certified under Stage 3 of Meaningful Use allow users to record, change, and access SOGI data. Notably, the rule requires the capacity to collect these data but does not require actual collection of the data. States can establish requirements and standards for SOGI data collection and use and there have been recent efforts by states like Pennsylvania to do so, fueled in part by glaring gaps in information about the impact of COVID-19 on LGBTQ individuals.

California’s LGBT Disparities Reduction Act, enacted in 2015, requires certain state agencies to collect voluntarily provided SOGI information in the course of collecting other demographic data. In September of 2020, the state enacted new requirements that any electronic tool used for reporting conditions of public health importance (like COVID-19) include the capacity to collect and report SOGI data on individuals who are diagnosed with a reportable condition and also requires health care providers of patients with a reportable condition to report the patient’s SOGI information, if known.

Oregon enacted a law in 2020 (HB4212) to require certain providers to collect race, ethnicity, spoken and written language, and disability (REALD) data for COVID-19 tests, hospitalizations, and deaths, and is currently considering a bill (HB3159) that would require coordinated care organizations, health care providers, and insurers to collect REALD and SOGI data. This bill would also require the Oregon Health Authority to establish data standards.

Other notable legislative activity in 2020-2021 includes:

  • New Jersey A5217 (companion bill S2174), requiring the collection of SOGI data in certain state agency surveys (introduced); and A4137 (companion bill S2459), requiring hospitals to collect and report SOGI data related to COVID-19 (introduced).
  • Hawaii HR138, requesting the inclusion of SOGI questions in the BRFSS and Youth Risk Behavior Survey (YRBS), which the state has done in the past (adopted).
  • Vermont HB210, requiring all state entities that collect health-related individual data to disaggregate data by race, ethnicity, age, primary language, socioeconomic status, disability, sexual orientation, and gender identity (enacted).
  • Illinois SB2133, amending the Data Governance and Organization to Support Equity and Racial Justice Act to include age, sex, disability status, sexual orientation, and gender identity in addition to race and ethnicity among the categories of data that must be reported (passed both houses).
  • New Mexico SB316, requiring SOGI data collection by state agencies and certain public bodies (failed).
  • New York S774A, requiring the collection of SOGI data by certain state agencies, boards, and commissions (passed the Senate).
  • Massachusetts H.2082, establishing reporting requirements to identify and eliminate racial and sexual orientation and gender identity disparities in mental health (in committee).

Recognizing data gaps, the federal COVID-19 Health Equity Task Force issued interim recommendations on April 9, 2021 related to vaccine equity that call for important changes that will contribute to equity in other ways, including mandating the collection of comprehensive, standardized demographic data and incentivizing health departments to update their data systems. States should ensure that their data systems can support the collection of SOGI data through programs and surveys and should consider adopting standards and requirements for the collection of standardized demographic data, including SOGI data as a way to better understand and address LGBTQ health disparities and identify population-level interventions.

This post was written by Dawn Hunter, Deputy Director, Network for Public Health Law – Southeastern Region Office.

The Network for Public Health Law provides information and technical assistance on issues related to public health. The legal information and assistance provided in this document do not constitute legal advice or legal representation. For legal advice, readers should consult a lawyer in their state.

Support for the Network is provided by the Robert Wood Johnson Foundation (RWJF). The views expressed in this post do not represent the views of (and should not be attributed to) RWJF.