THE PRIDE STUDY pRESS kit — May 2019

When it comes to lesbian, gay, bisexual, transgender, and queer (LGBTQ) communities, basic information about disease risk factors, health promotion activities, and unique strengths or weaknesses is unknown.

Some problems—including the HIV/AIDS epidemic in the 1980s—have had an unmistakable impact on the gender and sexual-minority population, but we still lack a comprehensive understanding of the ways that being an LGBTQ person can influence one’s overall health, or of health disparities within the LGTBQ community itself. The Institute of Medicine summed it up this way in 2011: LGBTQ people "have unique health experiences and needs, but as a nation, we do not know exactly what these experiences and needs are." Why is this the case?

In most health studies, data regarding sexual orientation and gender identity is not collected.

To address this research gap, The PRIDE Study was launched in 2017 as the first large-scale, long-term national health study of people who identify as LGBTQ, or another sexual or gender minority. The main question we want to answer over many years is: how does being an LGBTQ person influence physical, mental, or social health?

The background

Juno Obedin-Maliver and Mitchell Lunn, both physicians and professors at Stanford University School of Medicine, were colleagues in medical school when they noticed a lack in data on LGBTQ populations and a lack in education and training on LGBTQ health issues. They began to develop a research tool that would track sexual and gender minority adults over time to understand factors related to health and disease in this population.

After retiring a successful pilot of The PRIDE Study on an iOS app in 2015, The PRIDE Study was relaunched two years later to be accessible from any web-enabled device on pridestudy.org.

The main question we want to answer over many years is: how does being an LGBTQ person influence physical, mental, or social health?

The directors

Dr. Juno Obedin-Maliver

Co-Director (full bio)

I never intended to focus my time on LGBTQ health. But as an out lesbian, I knew that, regardless of what I did professionally, I needed to know how to take care of my friends and the members of my communities that I care so much about. I had lesbian friends who developed cervical cancer even though they “weren’t supposed to.” I had trans friends who were having kids even though medical science said they “couldn’t,” and I had gay friends who were more worried about their risk of heart disease than HIV but couldn’t get the information they needed. So, when the topic of LGBTQ health issues never came up in my medical training, I got fired up to start researching and advocating for LGBTQ health beyond my circle of friends.

But the more I looked, the more I found a lot of dangerous misinformation and unanswered questions. I found that LGBTQ people were categorized and stigmatized, but our experiences were never understood. Medical science seemed blind to the uniquely beautiful and challenging ways that LGBTQ people have navigated and created their lives.

It is time for us to be counted. It is time for medical science to understand our health so we get the care and services we need.

This is what The PRIDE Study is all about, a chance to put LGBTQ lives front and center so we can ask and answer the questions that matter to us.

Dr. Mitchell Lunn

Co-Director (full bio)

My interest in LGBTQ health began in medical school when I became frustrated about how little we knew about the healthcare inequities LGBTQ people face. As an out gay man, I feel connected to LGBTQ populations with a sense of responsibility to improve the quality of the data available with the overarching goal to improve health. Our research showed that medical students are taught little about LGBTQ-related health, but a new question arose: what are the LGBTQ-related health topics that must be taught to the physician workforce? That question requires notable evidence about the disparities, and these data are unavailable.

In 2011, the Institute of Medicine composed a report on LGBT health, which stated: “The relative lack of population-based data presents the greatest challenge to describing the health status and health-related needs of LGBT people.” That quote is particularly powerful to me and serves as a call to action! Unfortunately, sexual and gender minorities remain largely excluded from national demographic assessments, health studies, and clinical trials. Without long-term longitudinal studies, detailing the factors that influence health and disease in the LGBTQ populations will be challenging. But I believe that current scientific and sociopolitical environments are ripe for change!

The time is now for all LGBTQ people to come out for PRIDE! By doing so, we can get the data we need to improve health for everyone!

The experience

Access the study from any computer, tablet, or smartphone:

  • View a comprehensive, multi-year record of your personal and medical profile
  • Complete surveys tailored to your medical history and experiences
  • View group statistics and have first access to research findings
  • Participate in other research studies on LGBTQ health

In the news

We Don’t Know Nearly Enough About LGBTQ Health. A Massive New Study May Change That.

“We were trying to turn academia on its head and say ‘we want to study what’s important to you; help guide us and tell us what is important to you. We’ll see and try to meet that need,’" Obedin-Maliver said.

Slate Magazine

In the news

Apple iPhone app to power massive, decades-long study on LGBT health

Called PRIDE for Population Research in Identity and Disparities for Equality, it aims to learn more about the attitudes, risk factors and outcomes for a diverse range of conditions and diseases, such as HIV/AIDS, cancer, obesity, and depression, for this group, by studying the tens of thousands of people, who, the scientists hope, will sign up.

The Washington Post

In the news

San Francisco Doctors Tap App For Nationwide LGBT Health Study

"In order for the community to thrive — not just survive — we need to incorporate LGBTQ people into all facets of life, including health and research," said Obedin-Maliver. "We need to understand their needs in their own words and voices."

National Public Radio (NPR)

In the news

Apple's iPhone Is Powering A Massive LGBT Health Study

"The main question there is, what is the relationship between being LGBTQ — or more broadly a sexual or gender minority person — and mental and physical health?" Mitchell Lunn, co-director of the PRIDE Study and a clinical research fellow at UCSF, told BuzzFeed News.

BuzzFeed News

Want to write about us, access hi-res photos, or learn more?

We would love to hear from you! Please email us at media@pridestudy.org to get in touch, or download a PDF press overview and photos here.

In the meantime, check us out on Facebook, Twitter, and Instagram.

A study of Stanford University School of Medicine in partnership with the University of California, San Francisco.


The Gender Spectrum Collection

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