Appendix A

Summary of Prior Related National Academies Reports and Activities

LESBIAN HEALTH: CURRENT ASSESSMENT AND DIRECTIONS FOR THE FUTURE (1999)

The Institute of Medicine (IOM) report Lesbian Health: Current Assessment and Directions for the Future was the first IOM report to focus on the health of a sexually diverse population. The committee noted several important reasons for future research to focus on lesbian health issues, and it argued in favor of situating the health of lesbian women within larger social contexts in order to understand the role that discrimination and the stigmatization of homosexuality play in generating health disparities for this population. The report said there was no evidence that lesbian women are at higher risk for any specific health problem as a function of their sexual orientation, although that finding was due in part to the limited amount of available data comparing the health of lesbian women with that of heterosexual women. The report did note, however, that lesbians faced differential risks due to differences in the prevalence of risk and protective factors and because of diminished access to health care services.

The report recommended that researchers routinely consider including questions about sexual orientation on data collection forms in behavioral and biomedical sciences and that significant efforts should be made to protect the confidentiality and privacy of the study population. In addition, the report recommended that federal agencies should make long-term commitments to funding research on lesbian health and to organizing multidisciplinary conferences at which the research could be presented and its findings disseminated to health care providers, researchers, and the public.

THE HEALTH OF LESBIAN, GAY, BISEXUAL, AND TRANSGENDER PEOPLE: BUILDING A FOUNDATION FOR BETTER UNDERSTANDING (2011)

This IOM report identified three key issues that made studying lesbian, gay, bisexual, and transgender (LGBT) populations challenging: difficulties in assessment of sexual orientation and gender identity; reluctance of research participants to identify as LGBT or to answer questions about their sexual orientation or gender identity due to stigma; and the rarity of these populations in the general population. Moreover, much of the limited available research on LGBT populations focused on lesbian women and gay men, with the health of bisexual and transgender persons largely unexamined. The report said little was known about LGBT children, elder LGBT persons, or about racial and ethnic LGBT groups.

The report did describe several key findings about the health of LGBT populations, including that LGBT people are frequently targets of stigma, discrimination, and violence, and that these have negative effects on health. The report recommended that the National Institutes of Health (NIH), the sponsor of the study that produced the report, focus its future research agenda on five key areas to provide better understanding of the health of LGBT populations: studies of demographic issues, social influences on the lives of LGBT people, inequities in the health care system, interventions to improve LGBT health, and transgender-specific health care. The report also recommended that federally funded surveys and electronic health records should collect data on sexual orientation and gender identity. To aid this process, the report recommended that NIH fund research to develop valid, standardized measures of sexual orientation and gender identity.

SEXUAL ORIENTATION AND GENDER IDENTITY DATA COLLECTION IN ELECTRONIC HEALTH RECORDS: WORKSHOP SUMMARY (2013)

At this workshop, presenters described steps that federal agencies had taken to begin collecting sexual orientation information in electronic health records. They noted that the 2010 Affordable Care Act and the 2009 Health Information Technology for Economic and Clinical Health Act encouraged the federal government to develop and expand sexual orientation and gender identity data collection in federal health surveys and electronic health records as part of an effort to reduce health disparities.

Participants agreed that sexual orientation can be seen as having three facets: sexual behavior, sexual attraction, and sexual identity. Considering

these facets separately may be important in the context of health surveys and medical records. For example, sexual behavior may be more relevant than sexual identity when evaluating a patient’s risk for sexually transmitted diseases, such as HIV. However, in assessing risk for depression or suicide among adolescents and young adults, sexual attraction or identity may be more relevant than sexual behavior. Thus, assessment procedures should be tailored to fit specific research aims.

Several presenters noted that knowing a transgender person’s gender identity is not sufficient for medical providers to provide adequate care. Furthermore, if patients’ current gender identity as recorded in their electronic health record does not match their sex at birth, billing systems will often reject requests for sex-specific testing or procedures for these patients. For these reasons, several presenters proposed using a two-step sequence that collects both current gender identity and sex assigned at birth. Participants noted that, in addition to increasing reporting of transgender status, using the two-step method and learning and using patients’ preferred name and pronouns help them feel empowered.

PLANNING MEETING ON THE DEMOGRAPHY OF SEXUAL AND GENDER MINORITIES (2018)

This planning meeting, hosted by the Committee on Population (CPOP) and sponsored by NIH, laid the foundation for the consensus study that produced this report. The meeting highlighted data gaps and research opportunities centered around sexual and gender minority (SGM) populations, the term then used. Participants discussed how such characteristics as sexuality and gender, race and ethnicity, and socioeconomic class can affect individuals’ outcomes differently across the life course. Experts discussed topics related to family formation and planning, as well as social stratification and mobility. They emphasized the linkages between health, well-being, and policy, noting how structural discrimination can affect the social and behavioral pathways associated with positive health outcomes.

Participants agreed that the well-being of SGM populations spans a broad range of dimensions, including social, civic, economic, and health. Although SGM people are often categorized as a single subpopulation, there is significant diversity among them. Patterns of intersectionality by race, ethnicity, socioeconomic status, and other characteristics are also complex. While progress is being made with regard to measuring and collecting data on SGM populations, many complex issues have yet to be addressed. Participants identified key measurement needs focused around improved research design and methodological considerations for measuring SGM populations.

EXPERT MEETING ON THE DEMOGRAPHY OF SEXUAL AND GENDER MINORITIES (2019)

Building on knowledge exchanged at the 2018 planning meeting, this meeting, also hosted by CPOP and sponsored by NIH, focused on understanding the effects of intersectionality on sexual and gender minorities and helped to illuminate the less-thought-of nuances that add a unique layer of complexity to collection of data about SGM populations.

Participants discussed how stigmatization occurs at multiple levels—the personal level (perceived racism or homophobia), the service level (lack of cultural sensitivity among health providers), and the system level (state and federal law, health coverage)—and can cause isolation from health resources. They also noted that a person’s needs also do not remain static throughout the life course: for example, there is a different configuration of risks for older SGM populations than for younger SGM populations.

Race, ethnicity, gender, and sexuality are some of the intersections that are often considered, but gender expression, which can vary greatly within LGBT subgroups, can affect an individual’s experience in many systems. There is also a significant overrepresentation of certain SGM subgroups in some systems, such as juvenile justice and foster care. Suicide rates vary widely across sexuality and gender identities.

Participants noted that operationalizing intersectionality is difficult, especially in the context of SGM data collection, since the population is small relative to the overall population. Presenters underscored the need to use qualitative work and individuals’ reports of their own experiences to guide quantitative data collection. They also discussed tapping into community resources (not just legal and scientific institutions) to better support the SGM community and learn how to care for the whole person.