Researchers from University of California San Francisco announced this week the launch of what will be a landmark study to understand the health of people who identify as lesbian, gay, bisexual, transgender, or queer (LGBTQ) living in the United States.
The Population Research in Identity and Disparities for Equality, or PRIDE, Study is meant to understand health priorities and challenges for LGBTQ people. The PRIDE study has pre-enrolled 600 participants so far and researchers hope to recruit thousands more. The study will be largest of its kind to understand the lives and health of tens of millions of Americans who identify as sexual or gender minorities.
Visibility of LGBTQ people has grown tremendously, with the most notable example Friday’s Supreme Court ruling, making marriage legal in all 50 states. However, research on the health of this population remains woefully undeveloped. The Institute of Medicine (IOM), America’s most distinguished panel of scientists and doctors advised in a 2011 report that more effort must be made in capturing the experience of this population.
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One notable difference with the PRIDE study is that it will eschew tradition pen and paper surveys and use more up-to-date technology. The longitudinal cohort study will be benefitting from an iPhone app to connect with and track participating adults in the study. The goal is to learn over time the key factors factors related to health and disease in this population.
The study’s iPhone app has been built upon Apple’s Research Kit, an open source framework designed to help medical researchers create mobile applications for studies. Apple unrolled Research Kit in March and already applications to study heart disease, asthma, and blood sugar control have been built with the framework.
The study website states that those who do not have iPhones may still participate via a web interface, which is forthcoming.
According to a UCSF report, the study will begin in gathering demographic information and learning which health topics are of the highest priority to LGBTQ participants. Then, the study will ask for information relating to priority topics.
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Among the questions the study may answer is to verify data from smaller studies, such as the LGBTQ being more prone to depression, anxiety and may be a greater risk for suicide. Further, information may be uncovered on how to best intervene to reduce health risk behaviors such as smoking.
