The health issues associated with social determinants among individuals who identify as lesbian, gay, bi-sexual or transgender (LGBT) have long been known, including increased risk for suicidal ideation, homelessness, substance use and adverse childhood experiences. What has been unknown is whether those increased risks translate into actual mortality outcomes. That is because sexual orientation is not included in the routine data collected when a person dies in the U.S., such as gender, race and a host of other important information that can inform preventive care measures. 

In a first-of-its-kind comprehensive study recently published in PLOS One, researchers at the USC Suzanne Dworak-Peck School of Social Work uncover why the collection of sexual orientation data would be groundbreaking for understanding LGBT mortality risk. 

“Many people think that LGBT mortality disparities are isolated to certain causes of death — suicide, for example,” said Corinne Zachry, PhD candidate and first author on the study. “However, our research suggests that these specific types of mortality disparities are part of a larger pattern. To improve mortality outcomes for LGBT people, we must focus efforts on understanding and addressing factors that may contribute to higher mortality risk on a broader scale.”

The team of researchers, comprised of Zachry, John Blosnich and Marissa Ding for USC, Rory O’Brien, who is affiliated with both USC and the University of Michigan, and Kirsty Clark of Vanderbilt University, conducted an extensive systematic review of more than 6,255 abstracts and 107 full articles, and analyzed 43 studies that met inclusion criteria. Findings suggest elevated mortality for LGBT populations compared to non-LGBT, with 14 of the 43 studies supporting higher mortality outcomes, 28 studies partially supporting and just one study not finding evidence of higher mortality for LGBT persons. 

One of the most important findings of the study is that LGBT persons experience higher all-cause mortality across the spectrum, not just related to specific expected causes such as suicide or substance use. 

Without data, some deaths remain invisible to public health

“Health risks are different than a health outcome,” said Blosnich, associate professor at USC Social Work. One of the most important health outcomes we have in public health is mortality. The best way to keep people alive is to learn what's killing them.” 

He points out that in many ways not collecting and publishing LGBT-related data makes the mortality risk — and the people who experience it — invisible to public health policy. 

“These mortality data are both a sentinel and a benchmark,” Blosnich said. “They send off an alarm that there is a problem and also provide critical indicators of whether the public health programs we are implementing at a population level are working.” 

A key example of the impact that data collection can have on human lives can be witnessed within the veteran population. Collecting veteran status as part of mortality data has been critical to uncovering the higher rate of suicide among this population. Blosnich points out that if this data was not collected and published, we would never have known that veterans have a higher rate of suicide and be able to monitor that rate over time to evaluate the effectiveness of suicide prevention programs. 

“It is important for us to have the data on a large scale,” Zachry said. “Without this information, we cannot know or comprehend the problem — and just because we don’t collect the data doesn’t mean that it’s not happening.” 

Blosnich and Zachry note that collecting population health and mortality information, and making the datasets publicly available, is more important today than ever. 

“Our findings underscore the urgent need to collect sexual orientation and other relevant individual data in mortality surveillance to fully grasp the impact of persistent health disparities on LGBT lives,” said Clark, a social and psychiatric epidemiologist and assistant professor of medicine, health and society at Vanderbilt. 

Death investigator training helps fill the gap

The results of this systematic review also point to the need for increasing data collection, especially at the time of death. Because LGBT status is not collected as part of standard death data in the U.S., much of what is included in the review are long-term studies that followed people, sometimes for decades, through the lifespan before tracking mortality. 

“That's not great for public health prevention planning,” Blosnich said. “You don't want to have to wait 15 years to know what you're supposed to do next year.”

Over the last five years, Blosnich has focused on efforts to improve LGBT health-related research in the U.S. by addressing the lack of sexual orientation data in mortality surveillance. To help bridge this gap, he is working with a little-known profession: death investigators. These professionals are part of most coroner or medical examiner’s offices, 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 consolidates data from all 50 states. 

NVDRS is designed to collect information from local death investigators, 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 issues. Although the NVDRS collection process does include an option to include sexual orientation, those fields are mostly left blank.

Based on this lack of information, Blosnich developed a curriculum to train death investigators in collecting sexual orientation information. Blosnich notes that training is important because reporting sexual orientation is different than other demographics in that it can develop over time and is also not objectively observable. Following a successful feasibility study, Blosnich refined the training curriculum and continues to train death investigators across the country. 

Premature death costs everybody

For the first time in generations, the average life span has declined over the past decade. Premature mortality can be considered a public health crisis in and of itself, according to Blosnich. Premature loss creates complicated grief and bereavement and can impact the behavioral health of survivors, including substance use, depression, anxiety or even suicidality. It can also reverberate through communities, and affect people even if they did not personally know the deceased.   

In addition, there is a direct economic cost that many people do not think about, most notably in the form of lost productivity for the deceased. Blosnich notes this is a person who no longer is in the workforce, whose knowledge about their job is gone, and whose employer has to rehire and retrain a replacement. In the U.S., health economists estimate the average cost of a premature death, or “value of a statistical life,” is approximately $13.1 million and varies by factors such as age, education and occupation.

“There's any number of ways that this can snowball from one loss,” Blosnich said. “Especially if these are losses that happen out of the cycle of how we picture the lifespan. There’s a cost for every single death, and premature mortality costs everybody.” 

Zachry further explains that this meta-level collection and analysis of sexual orientation data related to mortality rates for the LGBT community has the potential to make broad impact. A main reason she chose to focus her doctoral studies in social work is the opportunity within the discipline to impact issues from a macro perspective as well as at the individual level. This particular study, putting numbers to the human experience, is a manifestation of her goal to guide the direction on research and policy that can directly improve the health of LGBT individuals. 

“This research really demonstrates and quantifies the potential human cost of suppressing data,” Zachry said.