UCSF starts ambitious study of LGBT health issues

UCSF on Thursday begins an ambitious study of LGBT health that will use information collected from iPhone and Internet users to build the largest database yet of the physical, mental and social issues that uniquely affect gay and transgender men and women. Data culled from the project, called the PRIDE study, is needed to define the health issues affecting the LGBT community and to develop strategies for addressing some of those issues, said the scientists directing the work. The scientists anticipate that most of the participants will join the study by installing an app, developed using Apple’s ResearchKit tool to help scientists collect health data, and agreeing to contribute certain health and demographic information. The paucity of LGBT health data is due in large part to a long history of distrust — entrenched during the early years of the AIDS epidemic, when treatment and research was excruciatingly slow to take off — between gay and transgender people and the medical establishment. Sexual and gender minorities may, at best, be disinterested in joining medical studies, and some may refuse to participate out of fear that they’ll be discriminated against or their concerns not taken seriously, said Obedin-Maliver. [...] stalling LGBT research has been a simple lack of interest by the larger medical establishment, scientists and public health experts said. Large clinical trials that look at participants’ gender and ethnicity almost never ask about sexual or gender orientation. [...] some studies have shown that gay men and women have higher smoking rates than the general population, but it’s unclear what effect that has on their rates of lung cancer or heart disease. [...] rates of depression and suicide are higher among transgender people, and while stigma and discrimination certainly must be factors, scientists haven’t teased out what other subtle issues may be at play, or how those mental health problems should best be treated. [...] that’s just addressing the mental and physical health problems that doctors already know and suspect — many more issues remain to be discovered, once scientists start collecting data, said Liz Margolies, executive director of the National LGBT Cancer Network in New York, who is not involved in the PRIDE study but is eager to see the results it could produce. The PRIDE study, which stands for Population Research in Identity and Disparities for Equality, begins with a six- to nine-month period during which participants will be asked to suggest topics of research and how best to collect health information from LGBT individuals.