Inclusive All of Us data poised to transform research on LGBTQ health challenges, outcomes

A nationwide health research program that includes the collection of data on participants’ sexual orientation and gender identity is producing a powerful, unprecedented and long-awaited resource for researchers studying health outcomes and inequities in the LGBTQ community, according to a new study by Stanford Medicine researchers.

The researchers used data gathered by the National Institutes of Health’s All of Us Research Program to evaluate whether sexual and gender minority groups have a higher prevalence of anxiety, depression, HIV diagnosis and tobacco use disorder than cisgender straight people. These associations have long been observed but have been difficult to study due to the lack of reliable health data for LGBTQ people, who are estimated to make up about 9% of the U.S. population. 

“When fully enrolled, the All of Us Research Program will be the largest data set of LGBTQ people in the world,” said associate professor of medicine Mitchell Lunn, MD. “It includes self-reported data as well as information from electronic health records and physical measurements that we know impact health, like weight and blood pressure. It is a powerful, rich and impactful resource for studying myriad questions about health and health outcomes for members of the LGBTQ communities.” 

The goal of the program is to collect health data from at least 1 million people who reflect the diversity of the United States, allowing researchers to learn more about how biology, environment, and lifestyle impact health. Currently, 75% of participants identify with communities historically underrepresented in medical research, including racial, economic, rural, and sexual and gender minorities. The program has enrolled more than 650,000 people.  

Rather than focusing strictly on this preliminary study’s findings, however, the researchers emphasize that their analysis serves primarily as a proof of principle for the data set’s utility. It allows them for the first time to tweeze apart the varying health outcomes of lesbian, gay, bisexual, transgender, queer, and other sexual and gender minority people.

“We finally have the data to disaggregate the L from the G and the B and the T and the Q, and more, and to learn more about the unique health challenges of each group with a goal of providing better support and care for all,” Lunn said.

Lunn is a lead author of the study, which was published online July 31 in JAMA Network Open. Postdoctoral scholar Nguyen Tran, PhD, is also a lead author. Associate professor of obstetrics and gynecology Juno Obedin-Maliver, MD, is the study’s senior author. Lunn and Obedin-Maliver co-direct The PRIDE Study — a Stanford-based effort to gather data about the physical, mental, and social health experiences and outcomes of people who are LBGTQ. 

Seeking better data

“Until now, there hasn’t been an accurate way of collecting data among the sexual and gender minority populations,” Tran said. “Either that information hasn’t been collected at all, or it wasn’t collected in the most accurate way. For example, the U.S. census doesn’t include information on sexual orientation or gender identity. So, we don’t get an accurate count of this community, and that influences how resources are allocated nationally. All of Us is one of the first efforts to capture this information on a nationwide level.” 

 All of Us participants can choose to provide information on their sexual orientation, gender identity, and sex assigned at birth. These data are integrated with race, ethnicity, economic status, data from wearable devices and other health data from electronic health records, as well as genetic data. Participants also can choose to receive genetic health-related information in return, including whether they are at a higher risk for certain hereditary diseases and how their body might react to certain medications. Eventually, most participants will also have their whole genome sequenced. Collecting such wide-ranging information will allow researchers to pursue many questions, including how racism, economic instability or neighborhood impact the health of specific populations or even subgroups of the LGBTQ community.

“Many of us have heard the saying ‘Your ZIP code can predict more about your health than your genetic code’,” Lunn said. “We’re particularly interested in understanding how some of these social determinants of health influence the experiences and outcomes of LGBTQ people compared with cisgender straight people.”  

The results of the study, which analyzed the data from about 30,000 LGBTQ people and more than 370,000 cisgender straight people, were consistent with what has been previously observed — mental and substance use disorders are more prevalent in the LGBTQ community, and cisgender sexual minority men are more likely than cisgender straight people or other members of the LGBTQ community to be living with HIV. This consistency is reassuring to the researchers. 

“The All of Us Research Program is so large and is collecting so many types of data, it’s important to evaluate whether the data is accurate and can capture some of these known health outcomes,” Tran said. “Our findings demonstrate that it is feasible to use this information to improve health and health outcomes for the sexual and gender minority populations. One of the things that is most interesting is that we saw variations in outcomes not just between LGBTQ and cisgender straight people, but also among subgroups.” 

Varying health findings

For example, the study found gender diverse people assigned male at birth and transgender women were less likely to have asthma than cisgender straight people, while members of other LGBTQ subgroups were more likely to have asthma. Transgender men were more likely than cisgender straight men to have a body mass index equal to or over 25, which is considered overweight, while other LGBTQ subgroups were less likely to have a body mass index above 25. 

“We have not been able to ascribe data from electronic health records to specific LGBTQ groups before,” Tran said. “Now we’ve laid the groundwork for a multi-dimensional view of health outcomes among sexual and gender minority people. It’s a very exciting starting point.”

As Lunn noted, “I want to emphasize that it’s not being LGBTQ that creates health problems. It’s the homophobia and transphobia, the lack of access to health care and the many other challenges faced by this community. We’ve not been able to study this thoroughly before. But now there is almost an overload of rich and complex data.” 

People who want to enroll in the All of Us Research Program can do so online or by emailing allofusresearch@stanford.edu to arrange a one-to-one appointment via Zoom or in person with a Stanford-based All of Us research coordinator regardless of their sexual orientation or gender identity. 

Researchers from the All of Us Research Program; Covalent Solutions; the University of Minnesota, Minneapolis; Cherokee Health Systems; the University of Chicago; the Asian Health Coalition; the Los Angeles LGBT Center; and the University of California, San Francisco, contributed to the study. 

Precision Medicine Initiative, PMI, All of Us, the All of Us logo, and “The Future of Health Begins With You” are service marks of the U.S. Department of Health and Human Services, National Institute of Health.

The study was funded by the National Institutes of Health (grants OT2 OD026549, OT2 OD026554, OT2 OD026557, OT2 OD026556, OT2 OD026550, OT2 OD 026552, OT2 OD026553, OT2 OD026548, OT2 OD026551, OT2 OD026555, AOD21037, AOD22003, AOD16037, AOD21041, HHSN 263201600085U, U2C OD023196, U24 OD023121, U24 OD023176, U24 OD023163 OT2 OD023205, OT2 OD023206, OT2 OD025277, OT2 OD025315, OT2 OD025337, OT2 OD025276 and OT2 OD027077) and the Gill Foundation.