Researchers at the University of California, San Francisco, have launched an ambitious study to build the largest database of health and social issues that affect lesbian, gay, bisexual and transgender (LGBT) people that will be centred round an iPhone app.
The “Population Research in Identity and Disparities for Equality” (PRIDE) study is the first one of this kind to better understand the health of LGBT adults in the US.
It will use an iPhone app to connect with and track LGBT adults over time to understand factors related to health and disease among them, the university said. Data collected through the study will be used to develop strategies for addressing the health issues of the community. Such data has been difficult to gather in previous research.
“Ideally we would like to get tens of thousands of participants and follow people for decades, something like 30 years,” Dr Mitchell Lunn, co-director of the study, told sfgate.com. “The goal is to figure out how being a sexual or gender minority influences physical or mental health.”
“The LGBTQ community has been understudied and underserved in health care settings,” said Kirsten Bibbins-Domingo, director of the UCSF Center for Vulnerable Populations.
“This timely study helps fill the gap in our understanding of health and disease risk in this population, and importantly involves and engages members of these communities in this health-related research in important and novel ways.”
The PRIDE app, which debuted in the Apple app store on Thursday just before the historic US Supreme Court ruling legalising same-sex marriages, will ask participants about their health history and concerns. Participants can also join the study through the website
After downloading the app, participants can answer basic demographic questions and post topics they would like researchers to study. Data gathered through the app will be used for a longer-term study that will begin in January 2016.
In 2011, the Institute of Medicine published a report that assessed that there was not adequate data on LGBT health.
“They concluded that the greatest threat to describing the health status and needs of LGBT people is the lack of population-based data,” said Mitchell Lunn, a research fellow in the university’s School of Medicine. “Now, we’re creating an electronic cohort to help gather that data.”
Lunn and Juno Obedin-Maliver, another research fellow in the School of Medicine, founded the
to engage the LGBT community, understand their health priorities, and frame research questions to address specific disease risks.
Nearly 600 participants have pre-enrolled in the study. With their electronic platform, Lunn and Obedin-Maliver aim to reach thousands more.
The PRIDE app is based on ResearchKit, an open-source software framework developed by Apple to helps researcher gather data more frequently and accurately from participants using mobile devices like the iPhone.
Other researchers have created apps to measure dexterity and gait in Parkinson’s disease patients and blood glucose levels in diabetes patients. Three more apps have focussed on breast cancer, asthma and heart disease.
It is the first study to use the ResearchKit platform to study a population rather than a specific disease.
Previous small-scale studies have hinted that the LGBT community is more susceptible to conditions such as depression and anxiety, and at higher risk of suicide. Habits such as smoking are more prevalent but little is known about the population-wide occurrence of such habits or how to frame interventions to decrease risks.
“There’s a real lack of evidence-based information on community health,” said Obedin-Maliver. “The current landscape for LGBTQ health is less of a map and more of a signpost in the desert. We aim to create that map.”