US efforts to collect LGBTQ+ data among medicaid patients is a 'foundational step towards health equity'

Compared to straight and cisgender individuals, sexual and gender minority adults in the US are more likely to face barriers paying for or accessing adequate health insurance and health care, but few states collect sexual and gender identity (SOGI) information to better understand the health challenges and needs of this population.

To close this knowledge gap, the Centers for Medicare & Medicaid Services (CMS) added three optional SOGI questions to its model application, with guidance for states that choose to incorporate the questions into their Medicaid and Child Health Insurance Program (CHIP) applications.

This federal effort to encourage the collection of SOGI data from Medicaid patients is a foundational step towards advancing LGBTQ+ health equity, according to a new commentary by Dr. Kevin Nguyen, assistant professor of health law, policy & management at Boston University School of Public Health and led by Dr. Nathanial Tran, a 2024 graduate of the Health Policy Ph.D. program at Vanderbilt University Medical Center and incoming assistant professor at the University of Illinois Chicago.

"Such federal guidance represents a significant step forward in improving the data infrastructure necessary to understanding potential inequities in health needs, access to and quality of care, and health outcomes for LGBTQ+ people served by Medicaid," the authors write in JAMA.

The commentary discusses the benefits—as well as potential limitations—of CMS' recommendations for incorporating SOGI questions into Medicaid applications, and considers how the agency can strengthen this guidance to ensure that SOGI data collection is comprehensive and more broadly representative of the LGBTQ+ population.

This guidance aligns with federal priorities under the Biden administration to provide a roadmap and best practices for agencies to develop SOGI data action plans. Previously, the Medicaid model application only included a "Sex" question to which applicants could select either "male" or "female." The additional questions inquire about sex assigned at birth, gender identity, and sexual orientation.

This new guidance to expand SOGI data collection presents an opportunity for state and federal agencies to collect an unprecedented amount of SOGI data that is both self-reported—the "gold standard" in research—and standardized, among the 88 million adults enrolled in Medicaid and 7 million children enrolled in CHIP.

"While this data would not be nationally representative, it has the potential to be the largest SOGI data collection effort to date in the US, and of any country," the authors write. "Few states currently collect SOGI data on Medicaid paper applications, and among those that do, there are no uniform data standards. Systematic collection of SOGI data collection in Medicaid may help identify differences in LGBTQ+ patient experiences and opportunities for Medicaid policy design that have otherwise been unobservable on a large scale."

This data collection could inform policies that spur targeted enrollment outreach, as well as assistance and resources to SOGI patients, who are more likely overall to be covered by Medicaid than straight and cisgender people.

Given the need for this SOGI information, allowing states to opt in or out of collecting this data collection may curtail the comprehensiveness of the data, the authors argue. Only seven states currently include questions on their Medicaid applications about inclusive sex, gender identity, and/or sexual orientation: Maine, Massachusetts, New York, Connecticut, Nevada, Oregon, and Washington.

"Optional–rather than mandatory–inclusion of these questions may mean the potential of these data may not be fully realized in the short term and may not be representative of all LGBTQ+ Medicaid enrollees," the authors write. "Additional federal guidance is needed to develop nationally representative estimates of LGBTQ+ patients who are uninsured or have other forms of insurance."