As I write this, we are nearing the end of Pride Month. I find myself reflecting on how far we, as a society, have come compared to the time of the Stonewall riot of 1969 or the panic and protests related to HIV/AIDS in the 80s and 90s. In the last 20 years, we have seen the end of Don’t Ask, Don’t Tell and the legalization of same-sex marriage. In health services research, we have made meaningful strides, especially related to gay men and, to a lesser extent, lesbian women. In other areas, particularly the health of the gender diverse population, we have a long way to go.
Recently, the National Academies on Science, Engineering, and Medicine (NAM) issued a report titled “Measuring Sex, Gender Identity, and Sexual Orientation (2022)”. In it, the authors note the major changes in the status of LGBTQ+ individuals in the last decade while highlighting the struggle to identify sexual and gender minority populations and the problems that they face, including limited access to healthcare as a consequence of harassment, discrimination, and violence. To that end, the authors point to the need for the standardization of better measures across federal data collection efforts.
What are these better measures? The authors make recommendations in three directions: first, related to measuring sexual orientation and identifying sexual minority populations; second, related to measuring sex and gender identity; and, third, related to measuring intersex/difference of sex development populations. Most importantly is the recommendation that information on gender, not just biological sex, should be collected by default.
Collection of gender identity information as part of standard practice will completely change health services research on gender diverse populations. Right now, only a patchwork of data sources contain information related to gender beyond binary sex markers: the California Health Interview Survey, a subset of the Behavioral Risk Factor Surveillance System, and other LGBTQ-specific data sources like the National Transgender Discrimination Survey and the United States Transgender Survey; the Veterans Health Administration is currently rolling out new ways to collect sexual identity and gender identity information. In the past, some health services researchers have used relevant International Classification of Disease codes or other techniques – like Natural Language Processing – as a workaround to identify gender diverse populations. While such techniques may identify members of gender diverse populations, they are far from perfect, identifying only a fraction, and not necessarily a representative one, of the gender diverse population.
Lack of data - especially nationally representative data - on the gender diverse population limits what we as health services researchers can ask and answer. Health services researchers focusing on gender diverse populations are still largely focused on detecting disparities. As health services researchers, we repeatedly define and describe disparities experienced by gender diverse populations but are unable to develop either deeper understandings of these disparities or meaningful interventions. More plainly, lack of data puts gender diverse populations at continued risk of poor health outcomes.
Still, some information on gender diverse populations is available. For example, in 2018, the Disability Rights Education and Defense Fund produced “Health Disparities at the Intersection of Disability and Gender Identity: A Framework and Literature Review.” The authors point to limited data on the gender diverse population, specifically the lack of data on disability types and prevalence within the gender diverse population. Using data from a 2015 U.S. Transgender Survey, the authors reported that about 39 percent of transgender participants had at least one disability and that “transgender people with disabilities experience disproportionately poor mental health outcomes.” However, the authors were not able to directly compare transgender and cisgender populations. Likewise, transgender adults with disabilities in the National Survey on Health and Disability (NSHD) had higher rates of unmet need than cisgender adults with disabilities. But, data from the NSHD only allowed the comparison of transgender and cisgender adults with disabilities, not disabled and non-disabled populations.
In short, when it comes to the gender diverse population, health services researchers are only just starting to understand what we do not know. There is no time to waste. Legislative persecution of the LGBTQ population has been steadily increasing since 2018. Thus far in 2022, nearly 250 pieces of anti-LGBTQ legislation have been introduced, many of these targeting the gender diverse population. A number of these pieces of legislation have been based in fear and supported by pseudoscience. As health services researchers, we have an obligation to produce accurate information about the health and well-being of LGBTQ+ people. Lasting change begins with better data.