The PRIDE Study is open for enrollment: People are ‘hungry to be heard and represented’

Last week, researchers officially opened enrollment in the nation’s first decades-long study of lesbian, gay, bisexual, transgender and queer health — an effort they hope will transform our understanding of the health challenges LGBTQ people face and begin narrowing a giant data gap on their physical, mental and social well-being.

“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.”

The PRIDE Study first began in 2015 with an extensive pilot phase involving more than 18,000 participants and that focused on gathering community input and creating the study’s data-collecting interface. While the pilot phase was limited to iPhone users, enrollment in the official study is open to anyone ages 18 and older who identifies as LGBTQ, lives in the U.S. or its territories, and can access the study’s new web-based platform. Obedin-Maliver, also an assistant professor at the University of California-San Francisco School of Medicine, said researchers are ready to enroll people who’d prefer participating by phone call or mail as well.

The goal is to eventually enroll about 100,000 people — a number researchers believe is representative of the nation’s LGBTQ population — 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. Researchers may send out additional surveys to subgroups within the study population as well. As of late May, Obedin-Maliver said more than 4,800 people had enrolled, many re-enrolling after taking part in the pilot phase.

“It’s been recognized that there are significant health disparities in this population, but we don’t have the kind of robust, systematic data collection that we need to really drive health innovations (for LGBTQ people),” she told me. “What’s really necessary is for all studies to include sexual orientation and gender identity.”

But until then, the PRIDE Study is poised to fill a major gap in what researchers and health providers know about the lives of LGBTQ people in America. In 2011, the Institute of Medicine released “The Health of Lesbian, Gay, Bisexual and Transgender People: Building a Foundation for Better Understanding,” concluding that LGBT health research has not been conducted evenly across sexual and gender minority populations, with less attention given to racial and ethnic subpopulations, adolescents and elders. The IoM report called on researchers to include LGBT people in health studies and data collection and recommended federally funded surveys get proactive about LGBT inclusion. Healthy People 2020, the nation’s health goals for the current decade, also calls for increasing the number of population-based data systems that include information on LGBT populations.

At the moment, however, greater inclusion of LGBTQ people in federal surveys doesn’t seem likely. In an article published in April in the journal LGBT Health and fittingly titled “If They Don’t Count Us, We Don’t Count," authors Sean Cahill and Harvey Makadon report that the Trump administration removed sexual orientation and gender identity questions from a national aging survey and decided against including sexual orientation and transgender identity in a national disability survey. They wrote that while there’s been significant gains in LGBTQ data collection, such collection has “ground to a halt” under Trump.

More data is one of the main goals of the PRIDE Study — “we don’t even know what we don’t know,” Obedin-Maliver told me. Right now, she said, we know relatively little about the specific health experiences of LGBTQ people, and few physicians include sexual and gender identity information in a patient’s medical history. That means health care and public health practitioners are missing out on data that's vital to both identifying disparities in care and disease as well as to creating more precise and effective interventions. For example, Obedin-Maliver said we know that LGB people smoke more often than their straight counterparts — about one in four vs. one in six — but we don’t know what would help them quit or what kept LGB people who don’t smoke from starting. Basic data on disease rates are often missing LGBTQ inclusion as well. Cancer registries, for example, don’t typically collect information on sexual and gender identity and so our understanding of cancer disparities among LGBTQ people is limited, Obedin-Maliver said.

“We don’t know enough on how to meet the populations where they’re at,” she told me.

In addition to collecting data to identify disparities, researchers also hope to gain better insights into the social and environmental characteristics that build resiliency.

“LGBTQ people face a lot of stigma and discrimination and yet many are really thriving,” Obedin-Maliver said. “So it’s important to ask: In the face of adversity and societal discrimination, how do people thrive?”

Throughout the PRIDE Study, Obedin-Maliver said she and fellow researchers are “committed to community engagement from beginning to end.” The PRIDE Study has built-in mechanisms to let participants give feedback, and researchers plan to keep communication lines open via social media. In addition, the study is partnering with more than 30 LGBTQ health organizations nationwide — a coalition known as PRIDEnet  — to ensure the study is representative and to help disseminate findings back into the community. An ultimate goal is to have a dataset big enough that researchers can build a system people can query to find local-level LGBTQ health information.

“Our hope is to really keep our constituents engaged and actively helping us shape the study as the decades go on,” she said.

While current participation in the PRIDE Study is limited to those 18 and older, Obedin-Maliver said researchers hope to include younger participants in the future. She said that because experiences in childhood and adolescence can affect health and behavior far into adulthood, “it’s critical to understand the challenges and pressures that youth face today.” For example, while LGBT youth make up about 5 percent of the general youth population, they account for about 40 percent of youth homelessness.

Plus, Obedin-Maliver said taking part in the PRIDE Study can be a particularly meaningful experience for LGBTQ youth.

“To document their experiences and be part of a bigger movement — it’s a positive, proactive thing they can do,” she said.

Taking part in the PRIDE Study is easy. Eligible participants create a personal profile, provide some baseline health and medical information, and then answer a yearly questionnaire designed to take about 30 minutes. People can stop participating at any time, and health data is protected with stringent security measures.

“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.

Kim Krisberg is a freelance public health writer living in Austin, Texas, and has been writing about public health for 15 years. Follow me on Twitter — @kkrisberg.