A Groundbreaking Study on LGBTQ+ Health Was Just the Start

Physician Mitchell Lunn, A04, engages communities that are largely ignored in medical research

Most health studies don’t collect data on sexual orientation and gender identity, said physician Mitchell Lunn, A04. That means that members of sexual and gender minorities are missing out on key information that could improve their health.

“There’s this invisibility of the LGBTQ+ community in a lot of the current research,” Lunn, an associate professor of medicine and of epidemiology and population health at Stanford University School of Medicine, told a Tufts audience. “If we look at a study of 10,000 people with diabetes, guaranteed there are LGBTQ+ people in that study. Are they visible in the results? Absolutely not.” And that makes it hard to see if something in their lives may or may not have contributed to the condition being studied.

Lunn is the co-director of the first long-term national health study of LGBTQ+ people, named The PRIDE Study, or Population Research in Identity and Disparities for Equality. He also co-directs PRIDEnet, a network of LGBTQ+ individuals and organizations helping to decide how health research is conducted.

On March 7, he was presented with the 2023 Lyon & Bendheim Citizenship Award by the Jonathan M. Tisch College of Civic Life for his advocacy for sexual and gender minority people’s health, inclusion, and well-being and for his engagement of vulnerable and hard-to-reach populations on the local and national level.

Lunn spent the day on the Boston health sciences campus and the Medford/Somerville campus meeting with students, faculty, and staff. Accepting his award that evening, he spoke about the importance of LGBTQ+ representation in medicine and his work on The PRIDE Study and PRIDEnet. Here are four takeaways from the event:

There isn’t a lot of data on LGBTQ+ health.

“The federal government doesn’t systematically ask about sexual orientation and gender identity on important studies, probably the most important study being the census,” Lunn said. “And so we don’t know where LGBT people live. We don’t know their races and ethnicities, their ages, anything about them.”

Census data is used in large federal health studies to ensure that sample populations are accurate representations of the country. But without data about LGBTQ+ people, it’s impossible to know if they are being effectively captured in national health surveys.

“Most healthcare providers also don’t ask about sexual orientation and gender identity,” Lunn said. “Because providers don’t ask—because they feel uncomfortable, they feel like it’s none of their business, or all these other reasons—we don’t actually have that data in health records either.”

Disparities are the result of discrimination, not LGBTQ+ identity.

“It is not being LGBTQ+ that causes health disparities; it’s homophobia and transphobia that cause health disparities,” Lunn said. “Just like it’s not being black or brown that causes a health disparity, it’s racism.”

Experiences with discrimination and stigma can keep sexual and gender minority people from seeking out medical care or participating in research studies.

“Many folks have fear of academic medical centers, or medical centers period, because they’ve been discriminated against. They’ve been misgendered or blamed for their health status or had unnecessary exams or a whole bunch of things,” Lunn said.

Researchers studying LGBTQ+ communities should prioritize the questions and concerns of those communities.

Lunn, his co-director Juno Obedin-Maliver, and their PRIDE Study colleagues partner with nonprofits to reach sexual and gender minority people across the country. They use a cell phone app to get input from the LGBTQ+ community about what they should be studying and connect with study participants. They also pay a participant advisory committee comprised of LGBTQ+ individuals to vet research ideas and a group of community ambassadors to act as spokespeople and review materials. And they disseminate study results to the participants before anyone else.

“About 95% of our team is LGBTQ+ identified,” Lunn said. “We are part of the community; we are doing this to better the community. It’s a by-us, for-us, with-us approach rather than just using the community, leaving, never disseminating the results, never telling you what the results of your participation were, which of course makes people more distrustful of research and less engaged.”

Push for progress, even if it’s slow.

“There have been times where I’ve been told, ‘You’re never going to do this. It’s career suicide to study LGBTQ health,’ because it doesn’t fit into the silos of medicine,” Lunn said. But he said he has been driven by knowing there is so much that needs to be done and that he is making a difference.

“Find things that you’re passionate about,” he said, “and don’t take no for an answer.”

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