This blog was co-authored with Christina Dragon, MSPH, CHES, Measurement and Data Lead at the NIH’s Sexual & Gender Minority Research Office
OBSSR’s mission includes enhancing the impact of health-related behavioral and social sciences research and communicating health-related findings from these studies to various stakeholders within and outside the federal government.
This mission includes a cross-cutting focus on health equity and the strategic priority to “enhance and promote the research infrastructure, methods, and measures needed to support a more cumulative and integrated approach to behavioral and social sciences research.” These complement the inclusion of research on health disparities experienced by sexual and gender minorities (SGM) to improve minority health outcomes and healthcare access in the NIH-Wide Strategic Plan for Fiscal Years 2021–2025. It is also aligned with the goals and mission of the Sexual & Gender Minority Research Office (SGMRO) that serves as the NIH lead for coordinating sexual and gender minority research and related activities.
SGMRO has led or contributed to several large-scale activities related to data and measurement of sex, gender identity, and sexual orientation that are important for the BSSR community to be aware of and engaged with. These efforts are crucial because, to-date, health-related information that includes data on sexual orientation and gender identity is not a part of routine data collection. The efforts highlighted in this blog are important steps in addressing this gap.
The recent NIH funded National Academies report, Measuring Sex, Gender Identity, and Sexual Orientation, released in March 2022,“highlights the current evidence base, recommends specific measures for use, and identifies research opportunities.” President Biden’s June 2022 Executive Order (EO) 14075, Advancing Equality for Lesbian, Gay, Bisexual, Transgender and Intersex Individuals, specifically highlights the need for robust data collection to improve LGBTQI+ American’s lives. Section 11 of the EO calls for an interagency working group to be formed as part of the Equitable Data Working Group (EDWG) to produce three main products. The first product, released in early January 2023, is the OMB Best Practices on the Collection of Sexual Orientation and Gender Identity Data in Federal Surveys. The second product, released in late January 2023, is the Federal Evidence Agenda on LGBTQI+ Equity. This Equity Agenda lays the foundation for federal agencies to develop Sexual Orientation and Gender Identity Data Action Plans as a tool for identifying opportunities and implementing inclusive demographic data collection for LGBTQI+ people.
While most of the Federal Evidence Agenda focuses on public facing data collection through the provision of services, surveys, and research, there are also components of the Agenda that are applicable to the internal federal workforce. Learning Agendas, which are “evidence-building plans” used to “identify, prioritize, and establish strategies to develop evidence to answer important short- and long-term questions” applicable to a federal agency’s mission, as well as its operations and internal processes (evaluation.gov) are a useful tool focusing on the question: “What additional evidence do we, as a Federal Government, need to advance equity for and improve the well-being of LGBTQI+ people?”. Every federal agency, and indeed every Institutes, Centers, and Offices at NIH could ask this question, particularly as it might apply to human subjects research. People with variations in sex characteristics, as well as transgender people (those whose current gender is different from the sex they were assigned at birth), have historically been invisible in research and have been forced to choose between binary responses for sex or gender categories to participate in research studies.
The SOGI Data Action Plans (required for every Federal Agency and updated annually) help guide planning and processes, including identifying where forms or documents have historically collected binary gender data and improving demographic questions to capture more accurate data regarding how a person experiences the world. Using sex assigned at birth as an indicator for anatomy, as implied through binary categories for sex or gender, has always been exclusionary for some individuals.
These important efforts are crucial to inclusive and equitable research in the behavioral and social sciences, as well as other health related disciplines. They will ensure that NIH and other federal agencies are collecting the data they need to build a strong evidence base to improve the lives and well-being of LGBTQI+ people. OBSSR and SGMRO will continue to work in partnership to ensure that NIH-sponsored research advances these critical issues.