The PRIDE study is the first of its kind. It aims to follow the same large group of LGBTQ people over the span of the next few decades. Enrollement is open to anyone who resides within the United States, identifies as a gender or sexual minority, and is over 18, its enrollment has surpassed 6,000 since launching in May.
We still lack a comprehensive understanding of the ways that being an LGBTQ person can influence one’s overall health, or of health disparities within the LGTBQ community itself. Researchers, Juno Obedin-Maliver and Mitchell Lunn, at the University of California–San Francisco are hoping to close that gap.
“Sexual and gender minorities make up between 2 and 6 percent of the population, however sexual orientation and gender identity are rarely asked about in health studies and they’re not included in fundamental metrics like the Census,” said Juno Obedin-Maliver, one of the principal investigators with the landmark effort, which is aptly titled the Population Research in Identity and Disparities for Equality Study — more simply referred to as the PRIDE Study. “It’s critical we have visibility into the health and health care experiences of these populations so we know where to direct our efforts. Without data, we’re flying blind.”
One of the big barriers we often found trying to encourage people to teach medical students, doctors or other health care providers about LGBTQ+ people was they said, “Well, there wasn’t enough evidence about the health care needs of the community.” And we kept giving lectures and complaining that the studies weren’t being done. We knew that health disparities were there, but we didn’t know how bad, how deep, how broad the problems were, or how comprehensive, because there wasn’t inclusion often in national studies. So Mitch and I said, “We’re both researchers, we’re both clinicians. Let’s stop complaining and do something about it.”
The goal is to eventually enroll about 100,000 people and follow them over the next 30 years, collecting data through an annual questionnaire. Questions will cover a range of health and social topics, such as physical activity, sleep, mental health, quality of life, insurance status, emergency care use, access to care, income, educational attainment, and family and social connections.
“People are excited — it feels like they’re hungry to be heard and represented,” Obedin-Maliver said. “The PRIDE Study is by and for the community. Yes, it’s academically rigorous, but it’s also a labor of love and a commitment to giving back.”
For more information or to enroll in the PRIDE Study, which is based at the University of California-San Francisco, visit https://pridestudy.org.