Collect Data on Sexual Orientation and Gender Identity in Health Surveys

commentary

Jun 25, 2021

Person filling out online survey, photo by Tero Vesalainen/Getty Images

Photo by Tero Vesalainen/Getty Images

In a recent Health Affairs commentary, Victor Dzau and colleagues articulate core issues for the Biden administration to address. We propose an additional area that could benefit greatly from relatively modest action.

The Biden administration is prioritizing the prevention of discrimination based on sexual orientation and gender identity. To achieve health equity through evidence-based policies and practices, there's a big gap to fill in national sexual orientation and gender identity data.

Only when questions about sexual orientation and gender identity are included in national surveys, such as those conducted by the Department of Health and Human Services, can researchers identify health disparities within or across groups who identify as lesbian, gay, bisexual, or transgender. Studies consistently show that people respond (PDF) to questions about sexual orientation and gender identity at rates even higher than they respond to questions about income. Further, large-scale implementation of such items by NHS England has yielded actionable information about important disparities.

Some respondents may need guidance to clarify sexual orientation and gender identity terminology. Our research suggests that “don't know” and “something else” options could be supplemented with more specific definitions of sexual minority orientations and gender identities. Federal guidance on sexual orientation and gender identity questions exists. Although it might need to evolve, there is no advantage in waiting to collect data.

The Biden administration wants to promote programs and policies informed by science and to help lesbian, gay, bisexual, and transgender Americans. For researchers to confidently answer that call, the first step is for the government to consistently collect sexual orientation and gender identity data.


Sarah MacCarthy is a policy researcher at the RAND Corporation and an affiliate faculty member at the Pardee RAND Graduate School. Marc N. Elliott is a senior principal researcher at RAND and holds its Distinguished Chair in Statistics.

This letter was first published in May, 2021 on Health Affairs Blog. Copyright ©2021 Health Affairs by Project HOPE — The People-to-People Health Foundation, Inc.

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