As the saying goes, if you’re not counted, you don’t count. One of the greatest contributions of health services research to both science and medicine is our commitment to using high-quality data to help health systems serve their diverse patient populations, optimize scarce resources, and achieve both scientific breakthroughs and better health for all. One group of patients, however, is still often overlooked in health services research and the medical and policy innovations it supports: the lesbian, gay, bisexual, transgender, and queer (LGBTQ) population.
Disparities in health care and coverage access, quality, and outcomes have been documented among the LGBTQ population since at least the 1980s, when the HIV epidemic began to ravage communities of gay and bisexual men and transgender people across the U.S. In the 1990s, disparities also began to be documented in rates of access to cancer screening and care among lesbians and bisexual women. More recently, a large and continuously growing body of research has described these disparities in detail and identified many more that continue to threaten the health and wellbeing of LGBTQ people. Despite these decades of awareness, too many health surveys, electronic health records, public health surveillance systems, and clinical research studies have continued to neglect the data that we need not only to identify and describe these disparities, but to close them.
Thankfully, we’re seeing progress. The last several years have brought major policy and practice improvements in data collection on sexual orientation and gender identity (SOGI). These advances will have huge ramifications both for health services research itself and for our field’s ability to advance LGBTQ health equity at both the population and individual levels.
In June 2022, the Biden-Harris Administration released a comprehensive Executive Order requiring the federal agencies to take concrete steps towards the routine collection and effective use of SOGI data to improve policy, programmatic, and budgetary approaches to LGBTQ health equity. In 2023, the White House Office of Management and Budget released guidance on question designs, building on a spring 2022 consensus study report from the National Academies of Sciences, Engineering, and Medicine (NASEM) on measuring sex, gender identity, and sexual orientation. Also in 2023, the White House Office of Science and Technology Policy released the Federal LGBTQI+ Equity Agenda, which directs each federal agency to identify data collection instruments and systems that need to be updated to include SOGI variables. And later that year, each federal agency developed the SOGI Data Action Plans required by the June 2022 Executive Order—committing themselves to making inclusive change in the landscape of federally supported data collection.
At the end of 2023, for example, the Centers for Medicare & Medicaid Services (CMS) announced that it has added SOGI data fields to the HealthCare.gov marketplace application and will add SOGI measures to 2025 Medicare Part C and D Model Enrollment Form. Around the same time, the Centers for Medicaid and CHIP Services (CMCS) issued an Informational Bulletin providing guidance to states seeking to add SOGI questions to their Medicaid and CHIP applications. Enhancing the collection of voluntary, self-reported SOGI data through these mechanisms is key to filling long-standing gaps in knowledge about how LGBTQ individuals—who are more likely to be uninsured than non-LGBTQ people—access health care and coverage through Federally-Facilitated Marketplace plans, Medicare, and Medicaid.
In more good news, the Office of the National Coordinator for Health Information Technology (ONC) is currently proposing to add new data elements for Name to Use, Pronouns, and Sex Parameters for Clinical Use to Version 5 of the U.S. Core Data for Interoperability (USCDI v5), which first started collecting SOGI data in 2021. Adding these new fields to electronic health records will support efforts to harmonize data from multiple health care institutions and improve coordination and delivery of patient-centered care. For example, SOGI information helps providers offer the right preventive services, such as cervical Pap tests, prostate exams, and mammograms. These data also support quality assessment and improvement efforts that can be stratified by sexual orientation and gender identity as well as by other important demographic variables, such as race, ethnicity, disability, and primary language.
While these are welcome developments, the current measures are not without their flaws. For example, the measures that CMS is implementing diverge from evidence-based best practices for measuring SOGI, such as those put forth by the 2022 NASEM report. Inadequate data modernization and interoperability efforts also mean that many application forms continue to include a redundant binary sex question alongside the up-to-date two-step demographic question for collecting gender identity and sex recorded at birth. Similarly, USCDI v5 relies on the SNOMED CT standards, which maintain a number of outdated and often offensive synonyms that must be modernized. These issues highlight the need for ongoing engagement by health services researchers, SOGI data experts, and health care and LGBTQ advocacy organizations—before, during, and after policy implementation—to encourage government agencies to improve their methods of responsibly collecting these data.
Importantly, it is not sufficient only to require the collection of SOGI data. Adoption of these policies must be paired with comprehensive training, education, and technical assistance for those collecting, storing, analyzing, and reporting the data. Policies are also needed to guide clear communication with respondents about the purpose of data collection, how data will be used, with whom and how data may be shared, the voluntary nature of self-reporting, and relevant nondiscrimination and privacy protections.
Routine, consistent, and high-quality SOGI data collection are indispensable for our work in health services research. They help us identify LGBTQ health inequities, design evidence-based health policy interventions, improve delivery of health care and access to health insurance coverage, and support intersectional research agendas. Particularly as the policy landscape in states across the country increasingly threatens the wellbeing of LGBTQ people and their ability to access essential health care services, health services research has both an immense opportunity and a moral imperative to leverage our scientific acumen for the individual and collective good.
Learn more about Data Equity at AcademyHealth’s Health Data Leadership Institute happening this May 7-8, 2024 in Washington. View the full agenda and register here.