The PRIDE Study Captures the Health Care Experiences of LGBTQ+ People to Improve Care
Launched in 2017, The PRIDE Study is the nation’s first large-scale health study of LGBTQ+ people. Featuring an annual online survey, the longitudinal cohort study explores the connection between health and sexual orientation or gender identity.
Stanford physicians Juno Obedin-Maliver, MD, MPH, MAS, and Mitchell R. Lunn, MD, MAS, met at Stanford University School of Medicine and completed their fellowships at UCSF. As medical students and fellows, they were involved with LGBTQ+ medical education and soon became frustrated by the lack of data about the overall health of LGBTQ+ people. Determined to close those research gaps, the physicians worked together to develop The PRIDE Study. Said Lunn, “The main question we want to answer over many years is: ‘How does being an LGBTQ+ person influence physical, mental, and social health?’”
The results of the study will enable researchers and health care providers to address disparities in care, prevent disease more effectively, and deliver better care to their LGBTQ+ patients. “I want to make sure that in the future when any LGBTQ+ person goes to the doctor, they are seen, heard, and understood, and get the answers they need,” said Obedin-Maliver.
How The PRIDE Study Works
The PRIDE Study participants complete an online survey once a year. Participants answer a series of tailored questions through a secure online portal, which they can access on a computer, tablet, or smartphone.
The questions cover a wide range of topics focusing on mental and physical health, access to care, and overall well-being. All answers are confidential, and the data is encrypted to protect participants’ privacy.
Because participants take the survey on an annual basis, their answers reflect how their experiences and concerns change over time. The comprehensive data helps health care providers follow the trends to gain a more holistic understanding of the needs of sexual and gender minority people.
Currently, the study includes more than 24,000 people who identify as lesbian, gay, bisexual, transgender, queer, or other sexual or gender minority. With each additional participant, data from The PRIDE Study becomes stronger and more comprehensive.
Gathering Vital Information from an Underrepresented Group
Over 7% of people in the United States identify as LGBTQ+, and that number continues to grow. But health details about this group of people are still largely unknown. Most health studies don’t collect information about sexual orientation and gender identity. And most of the people who participate in targeted research initiatives—such as studies about reproductive health and family planning—are cisgender and heterosexual.
The goal of The PRIDE Study is to widen this aperture to include the experiences of LGBTQ+ people. By collecting details about sexual and gender minorities specifically, health care providers are better able to deliver quality, customized, inclusive care.
The PRIDE Study sends a clear message to people in this underserved, and often vulnerable, community: their voices matter. LGBTQ+ people deserve health care that is welcoming, tailored, and effective. And they deserve to receive that care from providers who are informed and educated.
Creating Meaningful, Relevant Survey Questions
The PRIDE Study team goes to great lengths to include survey questions about topics that matter to LGBTQ+ people. To develop the questions, health care providers work with The PRIDE Study’s Research Advisory Committee and Participant Advisory Committee.
The team also adjusts, removes, or adds questions based on input from participants. "We need to understand their needs in their own words and voices," said Obedin-Maliver. It’s a collaborative effort to ensure that each participant has an inclusive and positive experience.
The questions cover a range of issues, including:
- Access to health care and experiences seeking care
- Body image and eating disorders
- Experience with discrimination, harassment, or violence
- Lifestyle factors that impact emotional and physical health
- Mental health concerns, including depression, anxiety, and stress
- Reproductive health, contraception, pregnancy, and family planning
- Self-harm and suicide
- Sexual behavior and intimate relationships
- Substance use and substance abuse
What The PRIDE Study Means For You and Your Patients
Findings from The PRIDE Study are providing valuable insight into the unique health needs and experiences of LGBTQ+ people. Highlights of The PRIDE Study’s ongoing impact include:
- More inclusive, compassionate care: With data from the study, health care providers are better equipped to deliver customized care to their LGBTQ+ patients. Doctors can connect with patients on a deeper level, treat them holistically, and build stronger provider-patient relationships, leading to better outcomes.
- Increased patient engagement: The PRIDE Study encourages LGBTQ+ people to voice their concerns and share their experiences regularly. When people feel seen, heard, and empowered, they’re more likely to play an active role in managing their health.
- Access to health trends: Findings from The PRIDE Study are illuminating health trends and helping researchers identify risk factors for disease. The research team continues to collect data and identify patterns. Armed with this information, doctors can deliver more effective preventive care and treatments for conditions that are more common among LGBTQ+ people.
- Ancillary studies: Researchers and physicians from across the U.S. have launched more than two dozen studies using data from The PRIDE Study. These ancillary studies explore findings and trends in more detail. They focus on many topics, including reproductive care, body image, mental health, substance use, and stress among the LGBTQ+ population.
How to Get Involved
Visit pridestudy.org to learn more. Patients can check their eligibility and join the study online in a few easy steps. Researchers interested in using data from The PRIDE Study can apply to collaborate via the Ancillary Studies (AS) program.
The PRIDE Study stands for Population Research in Identity and Disparities for Equality. Based at Stanford, it’s a study of Stanford University School of Medicine in partnership with the University of California, San Francisco (UCSF).
About Stanford Health Care
Stanford Health Care seeks to heal humanity through science and compassion, one patient at a time, through its commitment to care, educate and discover. Stanford Health Care delivers clinical innovation across its inpatient services, specialty health centers, physician offices, virtual care offerings and health plan programs.
Stanford Health Care is part of Stanford Medicine, a leading academic health system that includes the Stanford University School of Medicine, Stanford Health Care, and Stanford Children’s Health, with Lucile Packard Children's Hospital. Stanford Medicine is renowned for breakthroughs in treating cancer, heart disease, brain disorders and surgical and medical conditions. For more information, visit: www.stanfordhealthcare.org.