PLOS ONE Publication – May 2, 2019
Study #2: How The PRIDE Study iPhone App Was UsedOfficial Title: Using mobile technology to engage sexual and gender minorities in clinical researchCommunity Summary of FindingsWhat Did We Do?
The PRIDE Study is an online study of LGBTQ+ physical, mental, and social health. Our team recruited 18,099 participants for a pilot phase (also known as a testing phase). The phase lasted from June 2015 to May 2017. This pilot phase used an iPhone app.
Of those who consented to join, 16,394 people provided data. More than 98% identified as sexual minorities (people who are not heterosexual or straight). More than 15% identified as gender minorities (people who are transgender or gender non-binary). Participants completed 24,022 surveys. They provided input on 3,544 health topics. They cast 60,522 votes about those topics.
This article provides details about the app’s features. It also provides information about participants. We wanted to know gender identity, sexual orientation, race, ethnicity, educational level, annual income, and geographic region. What was New, Innovative, or Notable?
This is the first time a mobile app was used to engage and recruit lots of LGBTQ+ people who aren’t usually included in health research. We think that apps may be useful in other communities that have had negative experiences in health research settings such as hospitals and clinics. What Did We Learn?
We learned that a lot of LGBTQ+ people joined an online health study. They wanted to talk about health topics. They liked accessing live data via dashboards.
We had problems. For example, incomplete app testing resulted in a data storage error. Also, lots of people voting at once resulted in slow loading at times. Software problems kept us from easily providing new surveys to participants. What Does This Mean for Our Communities?
We now have an easier and more accessible way to get health information from LGBTQ+ communities. That means we can ask more specific and nuanced questions, especially as peoples’ lives change. We can give this information back to organizations that serve the health of our communities so that they can do their jobs even better.What’s Next?
We decided that there might be even better ways to enroll people in this type of study. The app model had problems. iPhones cost a lot. Some people can’t afford them. It was hard to develop an app for Android phones at the same time.
As a result of this pilot, we developed a web-based research portal. This portal is accessible from any Internet-connected device regardless of the size of the screen. This allows for more diverse ways to access the study, not just from a mobile phone. Action Step:
for more information and to share this study with your friends and family. Citation
: Lunn MR, Capriotti MR, Flentje A, Bibbins-Domingo K, Pletcher MJ, Triano AJ, et al. (2019) Using mobile technology to engage sexual and gender minorities in clinical research. PLoS ONE 14(5): e0216282. https://doi.org/10.1371/journal.pone.0216282