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THE RESEARCH

What are we learning?

Here’s where we tell you how your participation helps make the world better for LGBTQ+ people. Read on to find out some of what YOUR studies have found!

But first, this brief video talks about research questions and how scientists develop them. Sometimes the answer a study gets to a research question is surprising or things don’t work out the way researchers expect. These kinds of results are also considered important and we think it’s our responsibility to report them to you: https://www.youtube.com/watch?v=mrWeLJZydUU

JAMIA Publication – June 4, 2019

Study #1: How The PRIDE Study Research Platform was Built

Official Title: A digital health research platform for community engagement, recruitment, and retention of sexual and gender minority adults in a national longitudinal cohort study — The PRIDE Study 

Community Summary of Findings

What Did We Do? 

The PRIDE Study is an online study of LGBTQ+ physical, mental, and social health. In 2015, our team built a secure online website to learn about LGBTQ+ health. This website is one of the ways we interact with participants in The PRIDE Study. We also built a national network of organizations to help engage LGBTQ+ people in health research. This network is called PRIDEnet. 

We made the website interactive and fun. We recruited 13,932 people over 2 years. We recruited people of diverse ages, sexual orientations, and gender identities. We recruited people from different geographic locations in the United States. All of the people who joined The PRIDE Study interacted with the website. They completed long annual surveys. The surveys included sensitive topics. About 32% (3,813) of the people who joined were gender minority people. 

What was New, Innovative, or Notable?

This is the first time an online website and a national network were built for health research with LGBTQ+ communities. We think that this is a cost-effective and empowering way to do research. We think that this type of research will be even better in the future, as technology improves.

What Did We Learn?

We learned that online-only, long-term studies are possible. People engaged with the website and organizations joined our network. We recruited and retained more participants than we thought we would, particularly gender minority people.

What Does This Mean for Our Communities?

We can use online websites like this one to conduct health research and answer important questions. We can get LGBTQ+ organizations more actively involved in health research. We can answer more diverse questions about subcommunities within the LGBTQ+ community. We can provide better information for health care providers and policymakers so that people in our communities get better health care.

What’s Next?

· We continue to enroll people in The PRIDE Study. 
· We engage LGBTQ+ organizations in PRIDEnet. 
· We are producing interesting and relevant research. 
· We are using the input of many LGBTQ+ people.
· We are disseminating research findings to communities.

Action Step:
See http://www.pridestudy.org/study for more information and to share this study with your friends and family.

Citation: Mitchell R Lunn, Micah Lubensky, Carolyn Hunt, Annesa Flentje, Matthew R Capriotti, Chollada Sooksaman, Todd Harnett, Del Currie, Chris Neal, Juno Obedin-Maliver, A digital health research platform for community engagement, recruitment, and retention of sexual and gender minority adults in a national longitudinal cohort study–—The PRIDE Study, Journal of the American Medical Informatics Association, ocz082, https://doi.org/10.1093/jamia/ocz082

PLOS ONE Publication – May 2, 2019

Study #2: How The PRIDE Study iPhone App Was Used

Official Title: Using mobile technology to engage sexual and gender minorities in clinical research

Community Summary of Findings

What 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:
See http://www.pridestudy.org/study 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

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