Counting is the core of scientific research. This is not the case today for LGBTQ+ people at the most fundamental level: the death count. While it is well documented that LGBTQ+ people have higher rates of suicidal ideation, substance abuse and other potentially life-threatening behavioral health risks, there are no standard statistics that record the number of deaths each year for those who identify as LGBTQ+. Their lives — and deaths — are literally not counted. 

“Almost three million people die every year in this country, but we have no idea about their sexual orientation or gender identity,” said John Blosnich, assistant professor and director of the Center for LGTBQ+ Health Equity (CLHE) at the USC Suzanne Dworak-Peck School of Social Work, USC’s only research center dedicated to LGBTQ+ issues. “We have all this other information about demographic characteristics, but we don't have anything about sexual orientation and gender identity, so LGBTQ+ health researchers can't use that information whatsoever. It's basically useless to us.” 

Using a little-known profession to inform LGBTQ+ research nationwide

To address this critical gap, Blosnich is working with death investigators at the local level to integrate sexual orientation and gender identity into the information that they capture in investigating violent deaths, including suicides and homicides. Death investigators are part of most county coroner’s or medical examiner’s office, and they are the frontline collectors of death data. The information they gather through loved ones and associates about the underlying social, economic and health conditions of the deceased populates the National Violent Death Reporting System (NVDRS). Operated by the Centers for Disease Control and Prevention (CDC), NVDRS is mandated in all 50 states, beginning in 2018. 

NVDRS is designed to collect information from local death investigators and correlate it with facts from death certificates, law enforcement reports and toxicology reports into one anonymous database. In addition to demographic information, the data collected provides valuable context about violent deaths, such as mental or physical health conditions, relationship problems, and life stressors including financial or work-related problems. Although NVDRS does include sexual orientation or gender identity information, those fields are mostly missing information.

“In public health we see mortality information as the foundation for efforts to prevent death and prolong life, but we don't put adequate resources into mortality documentation,” Blosnich said. “I think it's because we're afraid to talk about it, but it is a necessary thing for us to do in this country, and to do it well.” 

A crucial step toward health equity in life

Blosnich first became aware of the lack of LGTBQ+ death data a decade ago. A colleague who was working on the National Strategy for Suicide Prevention reached out to him because they were lacking a major statistic for LGTBQ+ people that all other high-risk groups had: mortality. 

“Every other group — whether it be people with substance use, or racial and ethnic minority individuals — could get mortality information about the suicide rate for their population, but LGBTQ+ had no data at all,” Blosnich said. “What they did have is decades of research that showed higher rates of suicidal ideation and higher rates of suicide attempts. But those two things, even though they are risk factors for dying by suicide, are different from suicide mortality.” 

Based on this lack of information, Blosnich developed a curriculum to train death investigators in collecting sexual orientation and gender identity information, and conducted a feasibility study with 114 investigators in three states. Pre- and post-training questionnaires measured four perceived outcomes: training relevance, success of delivery, adequacy for future use, and likelihood of future use. Blosnich notes that training is important because sexual orientation and gender identity are different than other demographics in that they can evolve over time, and they are also not objectively observable, which presents unique challenges for data collection.

Outcomes were strongly positive overall, and based on the success of that feasibility study, Blosnich received a National Institutes of Health (NIH) grant to refine the curriculum and test it in a new study with death investigators in Los Angeles and across Utah. 

One of the key objectives of this larger study is to gain insight on creating buy-in with death investigators on the necessity of collecting and tracking this information, since only about 80% of the respondents in the feasibility study said they were at least “somewhat likely” to collect the information in future. Some investigators believe the system works well as it is, and already walk a delicate balance with interviewing people about their deceased loved ones. 

“Public health people can log in and get all this mortality data from NVDRS, and all this is neatly put together,” Blosnich said. “But we have to remember the really tough landscape that professionals in this occupation tread to forage for the data to put into these databases.” 

The curriculum and methodology developed by Blosnich is anticipated to be rolled out in additional areas, with the ultimate goal of making it part of the standard for death investigators nationwide. Blosnich is hopeful that this work will help to illuminate the mystery around this important metric in representation of LGBTQ+ populations for health equity research. 

“How people die, and knowing about how they die, is how we help people live,” he said.