In 2005, Juno Obedin-Maliver was a medical student with no plans to focus her career on LGBTQ health. As her medical training progressed, Obedin-Maliver, who is lesbian, noted a troubling gap: Topics related to the health of LGBTQ people weren’t being covered in a way that would prepare her and her classmates to take informed care of the people in her community. “I had lesbian friends who developed cervical cancer even though they ‘weren’t supposed to.’ I had trans friends who were having kids even though medical science said they ‘couldn’t.’ And I had gay friends who were more worried about their risk of heart disease than HIV but couldn’t get the information they needed.” She began to research and advocate for LGBTQ health beyond her circle of friends. “But the more I looked, the more I found a lot of dangerous misinformation and unanswered questions.”
Today, Obedin-Maliver and her classmate Mitchell Lunn, both MD ’10, are Stanford faculty members and co-founders of the Population Research in Identity and Disparities for Equality (PRIDE) Study. It is the first large-scale, longitudinal national health study of people who identify as lesbian, gay, bisexual, transgender, queer, or another sexual or gender minority (researcher-speak for anyone who is not straight and cisgender). The PRIDE Study seeks to document, over time, every aspect of how being a sexual or gender minority affects a person’s health, including the resiliencies and strengths specific to those communities.
Prior to the AIDS epidemic in the 1980s and ’90s, which galvanized research around the transmission and treatment of HIV and AIDS, primarily in gay men, there was little health research on topics related to LGBTQ health. Since then, interest in other aspects of LGBTQ health has increased, as have the number of LGBTQ health studies unrelated to AIDS. But in 2011, a report by the Institute of Medicine called out a lack of basic demographic data on sexual and gender minorities as a significant barrier to understanding their health needs. “There was just very little precision health about the LGBTQ+ population,” says Leslee Subak, MD ’91, professor and chair of obstetrics and gynecology. “And sexual and gender minority health research is still really in its infancy.”
Despite the relative scarcity of population-based data, what researchers did know was that sexual and gender minority groups faced significant health disparities and barriers to care: Compared to their straight, cisgender counterparts, LGBTQ people have higher rates of smoking, substance abuse, asthma, diabetes, eating disorders, anxiety and depression; bisexual women are more likely to experience intimate partner violence; LGBTQ youth are more likely to be homeless; and transgender people are more likely to attempt suicide. Older LGBTQ adults are more likely to have health problems related to economic insecurity, in large part because access to health insurance and retirement benefits through marriage have, until recently, been unavailable to those who have same-sex partners.
‘To start making changes to the health-care system broadly, it needs to be entered into the education of providers, and things in medical school don’t get taught unless there’s data to back them up.’
In order to address those disparities, researchers need data. That was a call to action for Obedin-Maliver, an assistant professor of obstetrics and gynecology, and Lunn, an assistant professor of nephrology. “To start making changes to the health-care system broadly, it needs to be entered into the education of providers, and things in medical school don’t get taught unless there’s data to back them up,” Lunn says. After finishing their residencies—Obedin-Maliver’s at UCSF and Lunn’s at Harvard—both became fellows at UCSF, where they applied for and were awarded a grant from the Patient-Centered Outcomes Research Institute to study LGBTQ health. In the pilot phase of the PRIDE Study, which launched in 2015, 16,000 participants answered demographic and health surveys using an iPhone app. The second phase of the study launched in 2017 with a secure online portal. In 2019, Lunn and Obedin-Maliver returned to Stanford as faculty members, bringing the PRIDE Study with them.
The PRIDE Study’s design follows what its founders call “community-engaged research”—a partnership between researchers and community members that shifts the balance so that researchers serve the needs of the people they’re studying rather than the reverse. Input from members of the LGBTQ community informs not just what Obedin-Maliver and Lunn study, but everything from the images on recruitment fliers to the language used in surveys to the infographics that depict the results. The approach inspires feelings of trust and investment among participants. “It felt good to help answer those questions,” says Claude Baudoin, MS ’74, a study participant and a board member of the alumni club Stanford Pride. “It felt like the questions really related to who I am and to other people I know. Since we have researchers who are dedicated enough to undertake this study, they deserve to have the rest of us participate.”
That feeling of personal commitment may help with one of the biggest challenges of a longitudinal cohort study, which is getting participants to keep coming back. “Retaining the people is really hard. We lose a lot to follow-up,” says Marcia Stefanick, PhD ’82, a research professor of medicine and principal investigator of the Women’s Health Initiative, which followed an initial cohort of about 162,000 women for 25 years. Longitudinal studies are notoriously difficult and expensive to do, Stefanick says, but the data they generate are crucial for addressing disparities and inequities in public health. “What you can never see with a cross-sectional study is change,” she says. “And change is the most interesting part. What do I need to do to change your behavior so you go from being unhealthy to healthy? What do I need to do so you go from feeling discriminated against or unsafe or traumatized to feeling safe and in a community?”
A 2010 survey found that more than half of LGBTQ people have experienced discrimination in health care. That number is higher for transgender and gender nonconforming people, and for those who are also people of color. “Things like refusing to touch them, using harsh language, blaming people for their experiences—we see these things over and over when we poll our communities,” Lunn says. Avoiding health care is a known contributor to poorer health outcomes, and negative experiences in health care are particularly fraught, says Obedin-Maliver, because the relationship between provider and patient is one that’s built on trust in a very short time. “The example I give is that when you see me as a primary-care doctor, I talk to you for five or 10 minutes, and then I tell you to take all your clothes off and you do, and you let me touch you. That’s effectively what happens in a doctor’s visit, right? That’s a very crude way to explain it, but that doesn’t happen in any other—well, it happens in only one other professional interaction.”
Going to the doctor may involve, if not an overtly negative experience, at least a moment of uncertainty about when, what or how much to share. For Laura Potter, ’14, a first-year School of Medicine student and a PRIDE Study participant, filling out her family health history at a new doctor’s office serves as a litmus test for how much to reveal about her own sexual orientation during the appointment; on the form, she’ll explain that her parents are lesbians and her biological father is not in their lives. “He was a sperm donor and that’s it. So that kind of begins it. And usually we get to that before we get to anything about my own identity, so I kind of get a feel for the provider based on how that goes. And based on that, I’ve now changed how I approach the rest of the medical interview and what I divulge,” says Potter, who identifies as bisexual or pansexual and says she’s had providers tell her she didn’t need a routine Pap smear or screening for STIs because of the gender of her sexual partner. “I think this is true of a lot of people—they put a little out there, and see how people respond, and then they may choose to hide a lot of really important information and the encounter is no longer as beneficial as it could have been.”
‘It’s going to open the avenue for core research and medical care for generations.’
For LGBTQ patients, culturally competent health care means having a doctor who knows that cisgender, heterosexual women aren’t the only people who get ovarian and cervical cancer, that gay men need to be vaccinated for hepatitis A, that transgender women may need screening for prostate cancer and that transgender men may need care that’s offered under the umbrella of “women’s health services.” In a recent study, a team including Lunn and Obedin-Maliver surveyed transgender people about their sexual and reproductive health experiences and found that many transgender men had been pregnant. “That is surprising to some people, but at the core of it, that says that all of these services that have been labeled as women’s health services don’t necessarily meet the needs of transgender men,” says Obedin-Maliver. “So if a man comes in and his name is John Smith, and he has a full beard, and he’s pregnant, and he wants to talk to a doctor about what his options are, whether to continue the pregnancy, [whether it’s a healthy] pregnancy—there’s almost nothing out there to guide those clinical conversations. And so these data, even just these simple, descriptive data saying there are hundreds of people who are trans and gender-expansive who have had pregnancies, start to say, ‘Gosh, this pamphlet about women’s experiences and what to do with pregnancy isn’t really going to work for our friend John Smith here.’ ”
The PRIDE Study is really thousands of studies, with the potential to answer more questions than Lunn and Obedin-Maliver’s team could ask in a lifetime of investigation. The data collected by the extensive annual survey is an infrastructure upon which other researchers are invited to build. Any researcher can propose a study using that data or request to design their own survey, subject to approval by a participant advisory committee. Every study’s design includes a plan for reporting the results to participants and a network of community partners, which include health-care providers serving the LGBTQ community. Because each initial of the LGBTQ abbreviation represents a group with distinctly different health-care needs, being able to identify who is most likely to smoke or suffer from disordered eating means being able to tailor interventions specifically for the people who need them. “It’s going to open the avenue for core research and medical care for generations,” says Subak, the ob-gyn chair. “The opportunities for impactful investigation are enormous because there’s so little known.”
Meanwhile, the data accrue. The 2020 U.S. Census was the first to include an option to identify a relationship as same-sex. In September, Gov. Gavin Newsom signed a measure making California the first state to require counties to ask people diagnosed with COVID-19 and other infectious diseases about their sexual orientation and gender identity, a milestone that Lunn applauds. “Only by collecting this data can we actually start to see if communities—not just LGBTQ communities, but racial and ethnic communities and others—are experiencing disparities related to coronavirus and coronavirus care. Because it’s not just the test, right?” Lunn also wants to know how people’s particular combination of community identifiers affect their health outcome.
“If you don’t have data, you can’t even figure out who has disparities,” Lunn says. “And then the next layer is why a particular group is experiencing this. Does being a racial or ethnic minority along with a sexual or gender minority have an additive or multiplicative effect on disparity? All of this is going to help us better understand what care people are or are not getting.”
Charity Ferreira is a contributing editor at Stanford. Email her at email@example.com.