The growing visibility of sexual and gender diversity within the U.S. population, as well as the continued identification of sexual orientation and gender identity disparities in services access, quality, and outcomes, has prompted a re-examination of the ways in which data on sex, gender, and sexual orientation are collected. As part of these efforts, in 2021 the National Institutes of Health asked the National Academy of Sciences (NAS) to convene a committee of experts to review current data collection practices and develop recommendations for measuring sex, gender identity, and sexual orientation in general survey research, administrative settings, and health contexts. The purpose of these recommendations is to enhance the quality and usability of data on these multidimensional constructs for the U.S. population as a whole, improve strategies for identifying LGBTQI+ populations in various contexts, and outline future research directions in the collection and use of these data. This presentation will discuss the committee’s approach to defining the constructs of sex, gender identity, and sexual orientation; the principles the committee developed to guide its deliberations; the committee’s overall conclusions and recommendations regarding the measurement of these constructs in different settings; and the report’s recommended directions for future research and policy efforts.

Executive Order 14075 on advancing equity for LGBTQI+ people, released in June 2022, specifically called out the role that data collection and evidence use play in advancing equity and full inclusion for this population. This EO emphasized the need for promoting inclusive and responsible Federal data collections and included a number of requirements in pursuit of that goal, such as the development of recommendations for agencies on the best practices for collecting sexual orientation, gender identity, and sex characteristics (SOGI) data on Federal statistical surveys. The EO also required the creation of an interagency working group focused on SOGI data and charged this group with developing the Federal Evidence Agenda on LGBTQI+ Equity, which Federal agencies will use to guide their required SOGI Data Action Plans. The Federal Evidence Agenda, released in January 2023, marks the Federal Government’s first-ever effort to provide a roadmap for agencies to build and use the evidence needed to improve the well-being of and advance equity for LGBTQI+ people. Across its three chapters, it discusses the data needs in this area, a whole-of-government learning agenda to advance LGBTQI+ equity, and guidelines for collecting SOGI data on administrative forms.

Sexual orientation, gender identity, and sex characteristics (SOGI) are key determinants of health for everyone, not just sexual and gender minority populations. Historically, public health practitioners have rarely collected SOGI data and, when it has been collected, it has been poorly measured. This measurement is necessary in every public health study to avoid misclassification, identify health disparities, and, more broadly, promote equity and inclusion. Respectful and accurate SOGI measurement can be difficult due to differences in conceptualization and terminology for these constructs across age cohorts, regions, racial and ethnic groups, and languages; measurement can also be further complicated when it is among sexual and gender minority compared to majority individuals. Contextual factors (e.g., stigma, mistrust) add to this complexity, as do the many methodological issues of identifying changes over time and proxy reporting.