The PRIDE Study Research App™
Evidence-based medicine is the method used by doctors (and taught in medical school) to treat patient populations. So what do doctors do when there's no evidence on health practices for a particular patient population?
Answer: Go get some evidence.
Doctors at UC San Francisco identified that they needed more data on the health issues facing lesbian, gay, bisexual, transgender, and queer (LGBTQ) patients. UCSF and THREAD joined forces to create the first-ever longitudinal healthcare study of LGBTQ people, called The PRIDE Study. The study is conducted entirely through a mobile app powered by Apple's ResearchKit™.
The PRIDE Study mobile app is the primary means of communication between researchers and study participants during Phase 1, referred to as the Community Listening phase, which is happening now. This phase allows the study population to participate in the formation of study goals by recommending research topics through a community discussion forum designed for repeat mobile engagement with the intent to expand to web access soon.
No research can begin without obtaining informed consent, of course. The PRIDE Study app utilizes an entirely digital consent, following the methods established by Sage Bionetworks in partnership with Apple. In this manner, the study can complete consent entirely through the mobile app, and does not require a "wet signature" as required in other clinical research trials.
Another primary objective is to gather demographic data via a survey in the app itself. This demographic data is foundational because it will inform later study protocols including the dynamic information of cohorts for deeper health study.
The third, and perhaps most important objective, is repeat engagement with the community. The Community Forum allows research study participants to nominate the health care topics that they believe are most important and relevant to their daily lives. Rich discussion using a comments/reply feature enables community topic granularity and consensus, along with "vote up" and "vote down" tools.
These research topics will be specifically studied in Phase 2 of the study. This approach is crucial to the study. It is a significant challenge for researchers to figure out where to begin studying a community so diverse and understudied. By giving the participants a voice through the Community tool in the app, the research efforts will be guided to the topics that promise to be most impactful to daily lives of the LGBTQ population in the US.
As of January 2016 (6 months after launching) results are as follows:
Initial goals were based on app downloads, and subsequent completion of trial registration including demographics and activities.