This blog is part of our Risks and Rewards of Demographic Data Collection series. It is a joint project of the National Health Law Program, the Disability Rights Education and Defense Fund (DREDF), Justice in Aging, Movement Advancement Project, and Race Forward
June 2023 marks the one-year anniversary of President Biden’s signing of the Executive Order on Advancing Equality Lesbian, Gay, Bisexual, Transgender, Queer, and Intersex (LGBTQI+) Individuals (the “LGBTQI+ Equality EO”). This executive order did many things, including giving instructions to the Department of Health and Human Services and the Department of Education to release sample policies to safeguard and secure health care access and safety in schools, respectively, efforts to address conversion “therapy,” and more. One section of the LGBTQI+ Equality EO focused on “promoting inclusive and responsible federal data collection” to help identify, understand, and address disparities experienced by LGBTQI+ people.
Why is improved LGBTQI+ inclusion in federal data, including surveys and administrative forms, so important for the health and wellbeing of LGBTQI+ people?
When questions about sexual orientation, gender identity, and variations in sex characteristics (SOGISC) are included in federal surveys and in administrative data such as program applications and forms, health registries, and other records, two things become possible:
- Better understand the population of LGBTQI+ people within systems or gaps in program participation
- Identify disparities faced by LGBTQI+ people in the health context—including differences in physical, mental, and behavioral health
Many federal health programs have built in evaluation processes, but without SOGISC measures, it is impossible to understand how health programs, such as Medicaid and Medicare, are reaching LGBTQI+ people and how their experiences and outcomes may differ from others. Importantly, many LGBTQI+ people are also people of color, those living with disabilities, those who are aging, those whose primary languages may be something other than English, and others who also experience disparities in access to care and health outcomes.
Where do things stand with federal LGBTQI+ data inclusion stand?
As we approach the one-year anniversary of the LGBTQI+ Equality EO, here are four things you should know about what’s happened and what is still needed, with a particular emphasis on how federal data collection in surveys and administrative forms could help advance health equity for LGBTQI+ people.
#1. January 2023 Release of the Historic Federal Evidence Agenda on LGBTQI+ Equity
As required by the LGBTQI+ Equality EO, the Subcommittee on Sexual Orientation, Gender Identity, and Variations in Sex Characteristics (SOGI) Data released the Federal Evidence Agenda on LGBTQI+ Equity. The report, released in January 2023, reflects the first time the federal government has formally summarized disparities faced by LGBTQI+ individuals and articulated how the federal government could take action—including through federal statistics and data collection—to better understand those disparities, what’s driving them, and how to address them. This 45-page report offers a roadmap for federal agencies to articulate clear, actionable, and achievable ways to assess, improve, and monitor the health and wellbeing of LGBTQI+ people.
The report outlines key questions and opportunities to advance health, health care, and equitable access to high-quality, affordable health care for LGBTQI+ people. It offers a roadmap for federal agencies, including those that focus on health, to explore drivers of inequality, ways to close disparities, and how to proactively improve care and access for LGBTQI+ people.
Notably, this report includes recommendations not just for federal surveys but also for administrative forms. Administrative data are different from, and provide a different picture than, other types of data such as data collected by surveys. Together, for example, administrative data—including electronic medical records—tell a story, often over multiple points of time, that is quite different from survey data, which is often one point in time and is reliant entirely on self-reporting. Because these data are generated and collected as part of regular processes, they generally have much lower costs than survey data and do not require a new survey or effort to collect. Administrative data also include participants across a program, so they have the potential for more representativeness than a survey and larger samples that allow for deeper and richer analyses. Particularly in the context of health care, administrative data provide important information that can reveal gaps in coverage or program participation, disparities in treatments and outcomes, and more.
#2. January 2023 Release of Recommendations on the Best Practices for Collection of Sexual Orientation and Gender Identity Data on Federal Statistical Surveys by the Office of Management and Budget (OMB) and the Chief Statistician
Unfortunately, the LGBTQI+ Equality EO did not require that federal surveys consistently include measures of sexual orientation, gender identity, and/or variations in sex characteristics (SOGISC). However, the EO did require this report, and the report provides examples, offers considerations for how to balance collecting this important data with the privacy and safety concerns of respondents, and calls for more research about how to advance inclusion on federal surveys and administrative forms.
This report, together with a 2022 National Academies of Science, Engineering, and Medicine (NASEM) report, offers a clear, coherent, and action-oriented base of knowledge for federal agencies to implement SOGISC data inclusion on surveys and administrative forms.
OMB is an important entity in terms of advancing federal demographic data collection. For example, earlier this year, they proposed important revisions to the “statistical policy directive” regulating how the federal government collects race and ethnicity data. The revision will improve race and ethnicity data collection by expanding collection of disaggregated data, allowing for a more nuanced and representative understanding of health care outcomes, access, and quality.
#3. Development and release of federal agency SOGI Data Action Plans
The LGBTQI+ Equality EO required that each federal agency must submit to a “SOGI Data Action Plan.” These plans should detail how the agency would use data to advance equity for LGBTQI+ people and specific ways that the agency will implement the recommendations from the Federal Evidence Agenda on LGBTQI+ Equity.
To date, some agencies have submitted their plans, though none have been made public yet. Once these plans are submitted, agencies are to include in their annual budget submissions any necessary funding increases to support better LGBTQI+ data inclusion.
This past spring, many organizations focused on LGBTQI equity, including MAP and NHeLP, encouraged agencies to be visionary and bold in their SOGI Data Action Plans. For example, such a plan from the Department of Health and Human Services (HHS) could include:
- Incorporating demographic analysis, including SOGISC measures, to monitor differences and disparities among various populations in programs such as Medicare, Medicaid, CHIP, and Healthcare.gov. By adding SOGI measures, as well as evaluating and adding variations in sex characteristics measures, to application forms, it would be possible to conduct these analyses.
- Examining how SOGISC data collection can be expanded to support quality-of-care initiatives and patient-centered services for underserved and vulnerable communities. That includes incorporating SOGI measures, as well as evaluating and adding SC measures, to quality improvement initiatives like the Consumer Assessment of Healthcare Providers & Systems family of surveys and standardized patient assessment data elements (SPADES).
- Adopting basic demographic data requirements for compliance and civil rights enforcement in health and health education programs and activities.
- Ensure the finalized USCDI version 4, which set standards for health data used across the country, includes improved sex, sexual orientation, and gender identity data elements and adds a standalone data element for variations in sex characteristics, which would support informed decision-making and the provision of person-centered care for LGBTQI+ people. Systems that help health systems and data sets connect with each other, sometimes called health IT interoperability systems, are critical for creating consistent, standardized data to support patient care and facilitate patient access.
#4. Funding and Testing for How to Add LGBTQI+ Inclusive Questions to the American Community Survey
Congress appropriated $10M for FY2023 to the U.S. Census Bureau to support further research about how to ask SOGI questions on the American Community Survey (ACS). The ACS is the largest demographic survey administered by the federal government and the survey used to distribute more than $675 billion in federal funding.
The U.S. Census Bureau preparing to test LGBTQI+ questions, in both English and Spanish, how questions perform on a household-based survey where one person answers for other members of the household (sometimes called “proxy reporting”), differences in responses for different interview formats (self-response via the internet or paper form vs. in interviews with Census Bureau staff). The Bureau will also work to test SOGI questions in the field. It is possible that the ACS could include SOGI questions by the end of the decade.
While the ACS isn’t a health care survey and doesn’t include key health-related questions, it is still an important tool for advancing health care equity. For example, in April 2023, research by the U.S. Census Bureau found that linking Medicaid data with Census data from the ACS and the decennial census helped identify gaps and created new estimates about health disparities, social determinants of health, and population health inclusive of race and ethnicity. Adding LGBTQI+ inclusive measures to the ACS also creates the potential to influence other federal demographic data collection more broadly. The ACS is a large and deep survey collection that is used to understand demographic experiences in many areas. Additionally, the methodological research that the Bureau is engaging in, including around translation and proxy reporting, will advance other data inclusion efforts, including on administrative forms.
Much has happened–and much more is needed–to ensure that the federal government, state and local governments, advocates, researchers, and policymakers have the high-quality data needed to design, implement, and evaluate measures to advance LGBTQI+ equity. As summarized in the National Academies report mentioned above, there are substantial harms that result from the continued lack of data inclusion, including the ability to more deeply understand the experiences of LGBTQI+ people and to develop interventions that effectively address disparities. It is long past time that federal surveys and administrative forms include SOGISC measures.