For much of medical history, lesbian, gay, bisexual, transgender, queer, intersex, asexual, and other sexual and gender minority (LGBTQIA+) individuals were largely invisible in health research. Many national health studies neglected to collect information on sexual orientation or gender identity, leaving critical questions about the health and well-being of LGBTQIA+ communities unanswered. Over the past several decades, that landscape has begun to change, driven by researchers, advocates, and community members who pushed for greater visibility, representation, and inclusion in science.
Few people have witnessed, and helped shape, that transformation more closely than Annesa Flentje, PhD. A clinical psychologist, professor at Stanford Medicine and co-director of The PRIDE Study, Flentje has spent her career advancing LGBTQIA+ health research at a time when the field itself was still emerging.
That career has unfolded alongside one of the field’s most ambitious efforts: The PRIDE Study. As co-director, Flentje has helped guide the nation’s first large-scale longitudinal study of LGBTQIA+ health, which now follows more than 30,000 participants and has generated evidence helping researchers, clinicians, and policymakers better understand the health experiences of sexual and gender minority communities.
We spoke with Flentje about the evolution of LGBTQIA+ health research, the power of community-engaged science, and what nearly a decade of The PRIDE Study has revealed.
Photo by Alexandra Medina.
The Conversation
Why is it important to create a national long-term health study focused specifically on LGBTQIA+ communities?
The PRIDE Study is unique in that it covers all aspects of health, including mental, physical, and social health. A lot of health studies are focused on a single condition or function, such as HIV or cardiovascular health. Given that we had very little information about the health of our LGBTQIA+ communities, we thought it was important to be comprehensive in the data gathered.
It is also important to know how our health changes over time, so the longitudinal aspect of the study was extremely important. We have just launched our 10th year of data collection! While there is so much we don’t yet understand about health conditions experienced by LGBTQIA+ people, a decade of participants providing their health information fills an enormous gap.
After following more than 30,000 participants for nearly a decade, what patterns have emerged most consistently across LGBTQIA+ communities?
We have learned a great deal about the resilience of our communities, including how deeply people lean into supporting one another, care for their communities, and engage in enriching activities, such as art and other creative or meaningful pursuits, that enhance their lives. We have seen this in the research, and we have heard it in the stories shared by participants and others within our communities.
At the same time, we have also learned that LGBTQIA+ communities experience very high rates of trauma exposure, as well as symptoms associated with those experiences. Trauma symptoms can be deeply impairing and may interfere with day-to-day life, wellness, and relationships.
That knowledge led me to launch the LIFESCAPE study, which is testing two evidence-based treatments for posttraumatic stress disorder among LGBTQIA+ patients in California. The goal is to understand whether existing treatments can help people in our communities reduce posttraumatic stress symptoms. I expect we will learn a great deal about how to better support community members as they heal from trauma.
More and more, we are looking for ways to turn what we see in the data into actionable change. That feels empowering because it builds on what we already know our communities are capable of: helping and supporting one another.
You began doing LGBTQIA+ health research before it was widely recognized as a formal field of study. What first motivated you to dedicate your career to this work?
I began my career working in mental health systems for adolescents and saw the injustices being done to LGBTQIA+ patients seeking care. LGBTQIA+ identities in adolescents were often flagged as an indicator of pathology even though LGBTQIA+ experiences are a normal and healthy part of being human. For youth and teenagers, being adequately seen and accepted for who they are is a necessary part of being able to grow up and fully self-actualize. For me, seeing that this wasn’t happening meant that I needed to dedicate myself to LGBTQIA+ health research and being a part of a solution.
You’ve watched major changes unfold in LGBTQIA+ health over the course of your career, from the HIV/AIDS crisis to marriage equality and growing national recognition of LGBTQIA+ health research. How have those shifts shaped your perspective as a researcher?
There are so many beautiful advances I have seen in my lifetime. I grew up in an era where a diagnosis of HIV was a death sentence. I was able to watch community advocacy motivate and shape research. That research made HIV treatable and allowed people to live long and healthy lives. The advocacy of community members, combined with the scientific advances that followed, helped transform HIV from a fatal diagnosis into a manageable condition and saved countless lives. Ultimately, the brave actions of the people who fought for those treatments have taught me that insurmountable challenges can be tackled with grit, drive, and community advocacy.
When I entered this field, I had no idea that marriage equality would come so fast. It seemed like it might take decades in the U.S, and then, all of a sudden, I was able to marry my partner.
As a researcher, I would not have been able to predict that rapid social change. In the years that followed marriage equality, I thought that many of the entrenched health disparities among LGBTQIA+ people may diminish, and we would begin to attain real health equity. Since that time, I have learned that we can lose what is valuable to us so quickly. This has made me realize how important it is to be steadfast in conducting rigorous research to support the health of our LGBTQIA+ communities.
The PRIDE Study has now generated more than 90 peer-reviewed publications. What findings or moments from the study have felt most meaningful to you personally?
There have been so many meaningful moments working with The PRIDE Study and our participants. One of the most powerful has been hearing from people who have printed out PRIDE publications and brought them to their health care providers. They use the research to advocate for themselves, saying, “Look, there are other people out there experiencing what I’m experiencing.”
I’ve also had participants tell me that simply completing our surveys was an affirming experience, and that they felt truly seen as a whole person.
I think there is a real sense of pride and ownership in being part of the study, and participants frequently share personal stories about how it has impacted their lives. Those conversations are a powerful reminder that our work is about more than just data. It is also about people feeling recognized, represented, and heard.
You’ve spoken about both the growth of LGBTQIA+ health research and recent funding challenges. What has it been like navigating those changes while continuing to advocate for this work?
This time has been both exhausting and reinvigorating. It has been devastating to see our communities targeted through policies, violence, and discrimination. The instability surrounding science and research funding has also significantly increased the amount of work we have to do. At the same time, it gives me even more reason to hit the ground running each and every day. All people deserve the opportunity to lead healthy lives, and that includes LGBTQIA+ people. Even as our communities face these challenges, we will continue doing everything we can to help make that possible.
When you think about the long-term future of The PRIDE Study, what impact do you hope it ultimately leaves on healthcare and LGBTQIA+ communities?
I hope The PRIDE Study helps generate the community-informed evidence needed to improve healthcare for LGBTQIA+ people while empowering individuals with the knowledge to make informed decisions about their own health and well-being. Ultimately, I hope it helps people lead healthier, happier lives.
