Powered by community, PRIDEnet works to uncover key insights about LGBTQ+ health.
The latest estimates indicate that there are 18 million adults and counting in the United States that identify as LGBTQ+. That’s 7.1% of the American population. Despite being a significant percentage of the population, there is very little known about LGBTQ+ health outcomes. Previous research has pointed to the possibility of health disparities due to the stigma, discrimination, and denial of human rights that the population faces, but there has been a glaring lack of longitudinal health research into these hypotheses. That’s where PRIDEnet and The PRIDE Study come in.
In 2015, Assistant Professor Mitchell Lunn, MD, MAS, and Assistant Professor Juno Obedin-Maliver, MD, MPH, MAS, teamed up to better understand how a person’s LGBTQ+ identity was related to their physical, mental, and social health over time. Lunn and Obedin-Maliver’s goal proved to be an ambitious one, particularly given the immense variation in lived experiences and identities of LGBTQ+ people.
Their vision eventually came to fruition as two complementary programs: The PRIDE Study and PRIDEnet, which serves as the community engagement mechanism of the research program.
Doing research with LGBTQ+ communities
A major strength of The PRIDE Study is that it is designed by LGBTQ+ people for LGBTQ+ people. “PRIDEnet actually started before The PRIDE Study as we were thinking about how to fill in research gaps and advance health equity for LGBTQ+ people,” explains Obedin-Maliver, who is the co-director of The PRIDE Study. “Historically, research has been done in really terrible ways on LGBTQ+ people. We wanted to do that differently, not just in how it was done, but also in what we were focusing on and making sure that people from the community were involved in every step of the process. The power in the project is really the people.”
Since its inception, PRIDEnet has grown and now includes a Participant Advisory Committee comprised of community members and health care specialists as well as a Community Partner Consortium consisting of more than 30 organizations from across the country. Members of PRIDEnet play a key role in aligning the priorities of The PRIDE Study with those of the larger LGBTQ+ community. Members get to make recommendations to avoid the all-too-often normalized harms perpetuated by research and academic institutions against LGBTQ+ people.
“The lack of trust [in health research] is so profound that it must be addressed with the type of evolution and effort and time that it took to create these issues,” says Shalonda Ingram, a member of the Participant Advisory Committee since 2018. “Until those bridges can be crossed with regularity, we’re going to continue to have a relationship of dominance in research.”
Javier Rios, a longtime resident of New Mexico and member of the Participant Advisory Committee since 2016, agrees: “I’m not a researcher. I’m a community person, and I bring the lens of where I live. What traditionally happens, especially with academia, is the approach of extracting data on a topic. They go and collect the data and fly away without giving back. I think The PRIDE Study does a good job of not doing that.”
Accessibility and transparency are vital
To avoid repeating institutional and historical violence, The PRIDE Study team ensures that research output from the program is transparent and accessible to community members, by publishing community-friendly summaries of the 30-plus papers derived from The PRIDE Study data on their public website and making available a list of active ancillary studies.
The PRIDE Study is also unique among large-scale research programs because of the foundational role that PRIDEnet and the Participant Advisory Community play in strengthening and sustaining the relationships between The PRIDE Study researchers and research participants. Ingram highlights how members of the Participant Advisory Committee mediate these connections and shares, “Diverse researchers can access data in communities that The PRIDE Study and other institutions simply cannot. This is due to existing relationships and trust-building participation in the communities being researched.”
Listening and implementing community recommendations
In recent years, the interplay between the Participant Advisory Committee and The PRIDE Study researchers has become more important than ever before as The PRIDE Study expands its reach and scope. Recent developments have included a powerful partnership with the NIH-run All of Us Research Program as a National Community Engagement Partner helping to education, excite, and enroll people in the program and, as of this year, the PRIDE Study’s first foray into biospecimen collection to address the underrepresentation of LGBTQ+ people in biospecimen-based health research.
Members of the Participant Advisory Committee meet regularly to review and provide feedback on these changes. Participant Advisory Committee members have, for example, been able to offer thoughtful perspectives about how these new avenues of research may affect the most marginalized members of the LGBTQ+ community, especially given the checkered history of biospecimen-based medical research in the U.S. Participant Advisory Committee members have also begun to work with The PRIDE Study researchers to imagine new ways of facilitating the relationship between researchers and community members, such as by developing toolkits for community members interested in initiating their own community research projects.
Diverse researchers can access data in communities that The PRIDE Study and other institutions simply cannot.
As The PRIDE Study grows and evolves, so has PRIDEnet and the Participant Advisory Committee. The indispensable role of PRIDEnet, however, has remained the same.
PRIDEnet reflects the vast diversity of life experiences within the LGBTQ+ community, and these myriad perspectives contribute to a more robust, accurate, and inclusive research program. Rios sums it up, saying, “The Participant Advisory Committee is important because we bring a lens that isn’t there without us participating from our geographic areas and the communities we represent. The community makeup isn’t the same, the resources aren’t the same, and the history isn’t the same. That’s probably one of the most valuable things that we bring.”
Ada Zhang is a third-year MD candidate at the Stanford School of Medicine, a writer, and a culture worker.
Valerie Win Liu is an Illustrator, Designer, and Artist based in the Bay Area.
Stanford Ob/Gyn Magazine: Winter 2023
This edition of the annual department publication features the providers building infrastructure out for pediatric and adolescent gynecology, an inside look at community engagement for LGBTQ+ populations, and an astounding improvement in the cesarean section rate made through CMQCC's quality improvement efforts. Read more.