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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

We're committed to getting our results back to the participants and communities who made the research possible. See our Research Dissemination Plan here:

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

European Eating Disorders Review Publication – December 2, 2019

Study #3: Eating Disorder Attitudes and Behaviors Among Gay Men

Official Title: Community norms for the Eating Disorder Examination Questionnaire among cisgender gay men

Community Summary of Findings

What Did We Do?

Many researchers who study health use a survey to ask about eating disorder attitudes and behaviors. We asked gay cisgender (people whose gender identity matches the sex they were assigned at birth) participants in The PRIDE Study to fill out this widely used survey. We analyzed the average scores of their answers.

What was New, Innovative, or Notable?

This is the first study to show the average scores of this survey for any gay men.

What Did We Learn?

People in the study engaged in dietary restraint (20%), binge eating (11%), excessive exercise (10%), laxative misuse (1%), and self‐induced vomiting (1%) at least once in the past 28 days.

What Does This Mean for Our Communities?

These results will help healthcare providers and researchers to use this survey with cisgender gay men.

What’s Next?

We want to understand more about eating disorders in other sexual and gender minority communities.

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

Citation: Nagata JM, Capriotti MR, Murray SB, Compte EJ, Griffiths S, Bibbins-Domingo K, Obedin-Maliver J, Flentje A, Lubensky ME, Lunn MR. Community norms for the Eating Disorder Examination Questionnaire among cisgender gay men. Eur Eat Disord Rev. 2019 Dec 2. https://doi.org/10.1002/erv.2708

Journal of Gay & Lesbian Mental Health Publication - December 17, 2019

Study #4 What Mental Health Providers Want to Know About Helping LGBTQ+ People

Official Title: 

Supporting sexual and gender minority health: Research priorities from mental health professionals

Community Summary of Findings

What Did We Do?

An internet survey was emailed to mental health providers asking about 62 different topics. We wanted to know which ones are important in their care of LGBTQ+ people. We also asked if there were any other topics that we should include in the survey.

One hundred and sixty-three mental health providers responded:

˙30% were psychiatrists
˙18.5% were marriage and family therapists
˙18% were psychologists
˙13% were social workers
˙13% were mental health counselors
˙7% belonged to several different professions in mental health

Just over half of these providers gave us new topics that were important to their care of LGBTQ+ people.

What was new/innovative/novel?

Directly surveying providers is not common. Asking providers who care for LGBTQ+ people to help guide a study is new. So, it may take less time to bring study results to the providers who need information to improve care if they were involved in choosing the topics.

What did we learn?

Mental health providers said that of the 62 topics, the most important to their care of LGBTQ+ people were:

˙stress related to being LGBTQ+
˙lifestyle factors that support emotional strength and health
˙depression
˙intimate relationships
˙suicide

We learned that there are areas that we did not ask the mental health providers about, but that they would like to more research on.

˙24% wanted more research on relationships among LGBTQ+ people:
      ˙Sexual relationships with many partners
      ˙Family relationships such as LGBTQ+ children and their families
      ˙Community relationships such as how LGBTQ+ people fit into their communities
˙22% wanted more research on how LGBTQ+ and other identities (such as race, ethnicity, immigration status, or disability) affect their health and experiences.

What does this mean for our communities?

There are opportunities to improve the information that mental health providers have, so that they can better care for LGBTQ+ people. While some topics have been covered in research, they remain important to providers and should continue to be researched.

There are new topics (listed above) we can share with mental health providers that may improve care.

What’s next?

Study results will be used to help inform the topics covered in The PRIDE Study. Some of the topics, such as depression and suicide, have been researched many times. This study shows there may be more ways to help care for LGBTQ+ people.

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

Citation: Clark, Kristen D., Matthew R. Capriotti, Juno Obedin-Maliver, Mitchell R. Lunn, Micah E. Lubensky, and Annesa Flentje. “Supporting Sexual and Gender Minority Health: Research Priorities from Mental Health Professionals.” Journal of Gay & Lesbian Mental Health, December 17, 2019, 1-17. https://doi.org/10.1080/19359705.2019.1700865

Substance Abuse Publication - February 7, 2020

Study #5: Substance use among underrepresented LGBTQ+ communities

Official/Published Title 

Characterization of substance use among underrepresented sexual and gender minority participants in The Population Research in Identity and Disparities for Equality (PRIDE) Study. 

What Did We Do? 

Substance use can have a dramatic impact on peoples’ personal and professional lives. Over time, substance use can put people at risk of certain types of cancer and cause heart and liver problems. LGBTQ+ community members may be at higher risk of using substances due to increased discrimination and stressful experiences like coming out to unsupportive family and friends. This study looked at substance use among 1,790 LGBTQ+ adults. About 40% (691) of these folks may not have been able to take part in previous research due to having non-LGB sexual orientations such as asexual, pansexual, or queer, and/or identify as genderqueer, transmasculine, or transfeminine. We looked for difference among these groups in the use of alcohol, marijuana, and other illegal or non-prescribed drugs. 

What Was New/Innovative/Novel?

This is the first study to look at substance use among diverse LGBTQ+ community members, such as people who identify as pansexual, asexual, queer, transmasculine, transfeminine, and genderqueer, and not just lesbian, gay or bisexual. 

What Did We Learn? 

Over half (51%) of the LGBTQ+ people in this study reported binge drinking within the last year, almost 40% reported marijuana used within the past year, and nearly 20% reported illegal or non-prescribed use of other drugs. Additionally, 30% reported feeling that alcohol, marijuana or other drug use had been an issue in their life. This study found that alcohol, marijuana, and other drug use was different among different groups of LGBTQ+ people who have not been part of research on substance use in the past, including transmasculine, transfeminine, and genderqueer people who identify as asexual and queer. 

What Does This Mean For Our Communities? 

This work shows that more research is needed to better understand the effects of substance use in our diverse LGBTQ+ communities. Not all members of this community use the same substances in the same way. So, we need to create better screening guidelines and treatment programs by including diverse people from all sexual orientations and genders to better understand substance use in LGBTQ+ communities. 

What’s Next? 

Alcohol use screening helps healthcare providers to identify and treat patients for possible alcohol use problems. However, current screening guidelines are based on gender and don’t include transgender and gender expansive people. We have already started to look at screening guidelines for possible harmful alcohol use among these groups. 

Action Step: 

Share this study with your friends and family. 

Citation

Branden T. Barger, Juno Obedin-Maliver, Matthew R. Capriotti, Mitchell R. Lunn & Annesa Flentje (2020): Characterization of substance use among underrepresented sexual and gender minority participants in The Population Research in Identity and Disparities for Equality (PRIDE) Study, Substance Abuse, DOI: 10.1080/08897077.2019.1702610 


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