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THE RESEARCH

What did you help us discover?

We are pleased to offer community summaries of findings here for two recently published articles. They are also available to read in PDF form. Our goal is to tell you what we learned in plain language. Let us know if you have questions. Enjoy!

JAMIA Publication – June 4, 2019

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 (Reading Grade Level: 9)

What Did We Do?

In 2015, our team built a secure online research website to learn about the health of LGBTQ+ people. This research website is one of the tools that we use to interact with participants in The PRIDE Study. We also built a national network of LGBTQ+ 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 a 2-year period. We recruited people of diverse ages, sexual orientations, gender identities, and from diverse geographic locations in the United States. All of the people who joined interacted with the website. They completed long annual surveys. The surveys included some 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 research website and a national network were built to do 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’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 to communities.

Action Step:
See http://www.pridestudy.org/study for more information.

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

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

Community Summary of Findings (Reading Grade Level: 9)

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 of The PRIDE Study. The phase lasted from June 2015 to May 2017. This pilot phase used an iPhone app.

Of those who consented to join, 16,394 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 participant information, such as 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 for participants.

What’s Next?

We decided to abandon the app model because of the problems above and because iPhones cost a lot. Some people can’t afford them. It was hard to conduct parallel app design in order to develop an app for Android phones.

As a result of this pilot, we developed a web-based research portal. This portal is accessible from any Internet-connected device. This allows for more diverse people to access the study, not just from a mobile phone.

Action Step:
See http://www.pridestudy.org/study for more information.

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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