reprinted from Issue 22, Spring 2016 of Frontiers of Medicine (PDF)
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Lesbian, gay, bisexual, and transgender people are vulnerable to poor health, yet are largely invisible: the US Census and most national health studies collect no information about sexual and gender minorities.
The PRIDE Study (pridestudy.org) hopes to change this, using iPhones and other technology to study LGBT health. Nephrologist Mitchell Lunn, MD, and obstetrics and gynecology fellow Juno Obedin-Maliver, MD, MPH, co-direct the study, which has enrolled over 16,500 participants nationally – likely the largest LGBT study cohort ever.
Lunn and Obedin-Maliver met in medical school, discovering a shared passion for improving LGBT health and health care. One challenge is the lack of population-based data; as a 2011 Institute of Medicine report noted, current knowledge is spotty, studying small groups over limited timeframes.
"We thought, maybe we should start a longitudinal cohort study of LGBT people of all sexualities and gender minorities, taking advantage of new technologies," said Lunn. The PRIDE Study uses a mobile app powered by ResearchKit, Apple’s open-source framework, and partners with 45 LGBT health clinics, community centers and advocacy groups nationally to recruit participants. The study launched in June 2015, one day before the US Supreme Court’s ruling on same-sex marriage, and received coverage in the San Francisco Chronicle, Washington Post and BuzzFeed. Enrollment is ongoing, and the co-directors plan to continue the study for decades.
The study’s initial phase asks about participants’ health history and invites them to suggest research questions. "By engaging the community very early in the process, we hope to study meaningful topics," said Lunn, emphasizing the need to earn respect from people who have often experienced discrimination from the medical establishment.
The next phase will include an annual health questionnaire and topic- specific studies. Later this year, the study will add a web-based portal for those without iPhones, access in other languages, and the option to contribute data from electronic health records and physical activity trackers like Fitbits. Some of the team’s research questions include:
LGBT people smoke more than the straight population; what are successful cessation strategies? Do transgender people on testosterone or estrogen experience increased cancer risk? How frequently do lesbians get Pap smears?
Pre-exposure prophylaxis (PrEP) is an effective way to prevent HIV transmission. What are barriers to more widespread adoption?
What are risk factors for depression and anxiety in the LGBT community? What are protective factors for mental illness and suicide?
"Hard-to-reach populations may never go to a clinical setting for a traditional research study," said Lunn. People may live far away or feel uncomfortable publicly identifying as LGBT, particularly when it is still legal in 28 states to fire employees based on sexual orientation or gender identity. "The PRIDE Study is convenient and private," said Lunn. "We hope it can contribute to a world without LGBT health disparities."