Growing 'PRIDE Study' aims to improve LGBTQ health care

Instead of getting health care advice from her doctor, Nathalie Crowley, a transgender woman, has found herself being the one who does the teaching.

"A lot of time we do have to educate on what is appropriate to say and what medical care we need," said Crowley. "When I am doing that I feel like they should be paying me at that point."

Getting medical care as a sexual or gender minority is still a hit-or-miss proposition. Some doctors are familiar with the issues and health care needs of lesbian, gay, bisexual, transgender and queer people, but most doctors receive very little, if any, training on the topics in medical school and beyond.

One reason for that is a lack of comprehensive research on those populations, especially studies that track individuals over decades to see what factors affect their physical, mental and social health.

That's why two LGBTQ doctors launched an ambitious effort, known as the PRIDE Study, that hopes to follow participants for as long as 30 years.

"We decided to stop complaining and do something about this," said Dr. Juno Obedin-Maliver, an obstetrician-gynecologist at the University of California San Francisco. "Let's create a study that will answer some of these questions about the gaps in health outcomes related to being a sexual or gender minority."

Working with 41 community partners, including the Program in Human Sexuality at the University of Minnesota, the study hopes to enroll 100,000 people across the country who agree to fill out an online health questionnaire annually.

"What we don't see is a high Midwest participation in most studies," said Dr. Jamie Feldman of the Department of Family Medicine and Community Health at the University of Minnesota, who studies transgender health.

"We have a lot studies that focus on transgender people at young ages and the start of taking hormones," said Feldman. "But we really don't have 30 years of following those same people over time."

Up until now, most studies of sexual and gender minorities have been conducted in large urban areas such as New York City, San Francisco and Los Angeles using a relatively small number of research subjects.

Like other minority groups that face discrimination, the findings point to higher rates of depression, anxiety, substance abuse and tobacco use. While those research results are important, they don't show how LGBTQ people change.

"There are many LGBT people who are not just surviving. How do people in the presence of systemic stigmatization and discrimination thrive?" Obedin-Maliver asked.

"One of the things that has been very scantily looked at is how LGBTQ people build families," Obedin-Maliver said.

Many researchers are expected to draw from the study, which then will be used to inform clinicians, policymakers and medical students.

As a patient, Crowley hopes that doctors take the time to learn the research that does exist.

"I tell providers that it is continuing learning," she said. "Even the workshop you went to three years ago is old information."

Crowley is patient resource coordinator for the Family Tree Clinic in St. Paul, where about 60 percent of its 4,500 patients are from the LGBTQ community.

Medical assistant Minkis Boisse, who identifies as transgender, got a job at the clinic after he became a patient. He said it is the first health care setting where he feels safe and respected.

Boisse, who suffers from asthma, had to be hospitalized once because of severe complications. A nursing assistant there began questioning Boisse about his genitals, even though there was no connection to the asthma attack.

"I am very open minded and want to educate people," he said. "But I was shocked. It was kind of like a freak show."

Becky Smith, the clinic's board president who identifies as queer, said that before coming to Family Tree she was trying to get reproductive health care with a doctor who ultimately became unprofessional.

"She completely shut down and couldn't handle being in the room with me and left," said Smith.

Crowley, who helps find specialty physicians for patients who need care that Family Tree cannot provide, tries to find doctors who will be welcoming.

"There are some providers who outright won't see trans or gay, lesbian people," she said.

The PRIDE Study asks about participants' experiences with the health care system, which is one reason it wants to include sexual or gender minorities from rural areas.

Because the study is web-based and can be done using a phone, tablet or computer from the privacy of home, organizers hope to enroll those who typically would not participate in an LGBTQ-themed study.

"In order for our voices to be heard, our stories to be told and our numbers to be counted, people have to participate," said Carolyn Hunt, community engagement director for the PRIDE Study.