With the help of an iPhone app, UCSF will begin a study that collects unique data about the LGBT community.
Information collected will be around the physical, mental and social issues that gay and transgender men and women in order to create strategies that can help address them, according to SF Gate.
Scientists have said that in the past, this type of information was nearly impossible to gather over a large spectrum of people in the LGBT community. The PRIDE study hopes to reach a larger number of people in order to collect the best information to provide more and better services.
The researchers anticipate that most participants will take part in the study via the app created by iPhone. Both the app, and a direct internet website, www.pridestudy.org, were up and running as of Thursday morning.
“Ideally we would like to get tens of thousands of participants and follow people for decades, something like 30 years,” said Dr. Mitchell Lunn, a UCSF nephrologist and co-director of the PRIDE study. “The goal is to figure out how being a sexual or gender minority influences physical or mental health.”
Directors of the project feel that this type of specific information from the lesbian, gay, bisexual and transgender community has been lacking. They feel that the lack of trust between the LGBT community and the medical field stems from the excruciatingly slow process of research and treatment specific to the early years of the AIDS epidemic.
Co-director Dr. Juno Obedin-Maliver, a UCSF obstetrician and gynecologist, believes that information is slow to come from the LGBT community in medical studies due to a fear of being discriminated against or that their issues would not be taken seriously.
The lack of interest from the larger medical establishments and the lack of larger clinical trials that look at participant’s gender and ethnicity, rarely ever ask about sexual or gender orientation.
The holes in researchers’ understanding of the LGBT issues is what led the UCSF team to their current research. They hope to address issues linked directly to the LGBT community that could be harmful or need better formed services to address.
On their list of possible increased health issues are smoking, depression and suicide. From information available now, rates of depression and suicide are higher among transgender people. They feel that the study will not only address the already-known issues, but hope it will uncover the other issues within the community.
The PRIDE study, which stands for Population Research in Identity and Disparities for Equality, will encourage those in the LGBT community to contribute information that can help them and others grasp a better understanding of their health.
Obedin-Maliver said that the questions asked as part of the research will go beyond the expected health surveys, but will focus more on issues specific to gay and transgender men and women. For example, she’s interested in breast cancer risk among transgender men on testosterone therapy to better understand her own patients as well as discuss the risks of heart or liver disease and even weight gain in relation to their testosterone levels.
“Those are incredibly valid questions, but if I was left to my own devices, I may not ask those questions. I wouldn’t prioritize questions that are really relevant to people’s lives,” Obedin-Maliver said. “We’re trying to reposition ourselves to be a service to the community.”
