Taking PRIDE in Their Work
IN OCTOBER 2016, THE NATIONAL INSTITUTES OF HEALTH MADE A BOLD PROCLAMATION:
Mounting evidence indicates that sexual and gender minority (SGM) populations have less access to health care and higher burdens of certain diseases, such as depression, cancer, and HIV/AIDS. But the extent and causes of health disparities are not fully understood, and research on how to close these gaps is lacking.
That statement reinforced what two young physicians—Mitchell R. Lunn, MD, MAS, and Juno Obedin-Maliver, MD, MPH, MAS—already knew. They understood that the largest threat to describing the health status and health-related needs of LGBT people was the lack of population-based data.
“The data didn’t exist because common collection techniques like the U.S. census and medical forms don’t typically ask patients about their sexual orientation or gender identity,” says Lunn, assistant professor of nephrology.
To overcome the deficit, Lunn teamed with Obedin-Maliver (now assistant professor of obstetrics and gynecology) in 2015. They set out to collect the data through a national, longitudinal, dynamic, cohort study. That is, they wanted to gather information from the same individuals within the United States repeatedly over a period of time.
Their overarching goal was to understand how identifying as an SGM person affects one’s health—physically, mentally, and socially.
“We view health in a very holistic way,” Lunn says. “Social health includes things like your experiences of stigma and discrimination in society, but also the things that make you happy: your support system, the things that make you resilient, the things that bring you joy, how your families are structured, for example.”
In the Beginning
The story really began in 2015 when, as research fellows at UC-San Francisco, Lunn and Obedin-Maliver launched a pilot of The Population Research in Identity and Disparities for Equality (PRIDE) Study using an iPhone app. They believe that was the first time a mobile app had been used to specifically recruit large numbers of an underrepresented population for clinical research.
Armed with data from 1,000 participants nationwide who had completed online demographic and health surveys during the pilot, Lunn and Obedin-Maliver launched a web-based platform in 2017 to reach a more diverse pool of participants that now exceeds 16,000 people.
They brought their work to Stanford in early 2019, largely for the opportunity to work collegially with Obedin-Maliver’s mentor, Leslee L. Subak, MD, department chair of obstetrics and gynecology. Subak was starting an SGM program at Stanford that was backed by Stanford School of Medicine Dean Lloyd Minor, MD, and Department of Medicine Chair Robert Harrington, MD.
Between 2019 and early 2020, 10 papers were published, in press, or under review. They address such topics as substance use, eating disorders, survey design, and optimal ways to ask about sexual orientation and gender identity for research purposes.
Now others at Stanford are working in conjunction with The PRIDE Study.
One is Eleni Linos, MD, MPH, DrPH, professor of dermatology, who had a paper published in the Oct. 4, 2019 issue of JAMA Open Network. A finding in that paper suggests the possibility that the tanning industry may be targeting gay and bisexual men, who are six times more likely than heterosexual men to tan indoors during their lifetimes and about twice as likely to suffer from skin cancer. Linos’ research team hopes to partner with The PRIDE Study to investigate the marketing and advertising efforts of the tanning industry.
In another project, Amy Dobberfuhl, MD, MS, an instructor of urology, is working with Obedin-Maliver to look at urinary voiding among transgender people.
“You can imagine that if you feel discriminated against about which bathroom you’re going to use, then you may ‘hold it’ and not pee until you feel safe. And over time that can result in dysfunction of how you empty your bladder,” says Lunn.
A key component of The PRIDE Study is community engagement.
“Juno and I are not the ones deciding research questions,” Lunn explains. “Every study that we do, every paper that we write, every collaboration that we do with investigators at Stanford, or outside of Stanford, gets reviewed by a scientific committee as well as an advisory committee of 11 people from across the country who are SGM advocates and bring various perspectives. They have equal weight in deciding if a study that we do moves forward.”
Lunn and Obedin-Maliver don’t want the study’s research to live and die in medical journals. Instead, they want it to get back to the communities they are hoping to serve.
“We really want to be partners with folks and make sure that they’re involved not only in the research itself, but also in receiving results of the research in ways that are accessible for them,” Lunn says.
That’s why they oversee the creation of community-friendly summaries that translate scholarly research into descriptions of the research and its outcomes that are easy for all members of SGM communities to understand.
Eventually they intend to expand those activities to include short videos, infographics, and other communications that will be easy to share via social media.
Lunn and Obedin-Maliver would not have embarked on this work without the hope of changing clinical practice.
As an example, The PRIDE Study is involved in an examination of how people are screened for problematic or harmful alcohol use.
“Conventionally, those types of analyses are based on somebody’s sex assigned at birth. A survey might look at what happens if you have more than five drinks at a time if you’re male versus having four drinks at a time if you’re female,” says Lunn. “But how does that work for gender minority people? What if you’re a transgender person who’s been on hormones for 20 years? Which one of those is the appropriate answer? So we have studies like that, which we hope will influence screening guidelines.”
The researchers also think about using the study to move beyond medicine and into “social health” and public policy.
“If we can show that people who have had many traumatic experiences on the basis of their gender identity or sexual orientation have certain health outcomes, then that can provide some evidence to actually change policy and laws,” he says.
“I hope that the long-ranging effects of this study are that SGM people get more competent and appropriate care based on their sexual orientation and gender identity. And that society changes to make life better for them. And by making life better for them, it can improve their health,” he adds.
Many other longitudinal cohort studies, like the famous Framingham Heart Study, go on for generations. As to how long The PRIDE Study will continue, Lunn says, “we’ll keep this going for decades—or until we’re no longer needed.”