Written by: by Matthew S. Bajko
Photo of: Dr. Juno Obedin-Maliver is co-director of the PRIDE Study.
A yearslong national health study of LGBT residents of the United States being conducted by researchers based at UCSF is now seeking participants.
Known as the PRIDE Study – the acronym short for Population Research in Identity and Disparities for Equality – it is the first longitudinal study of a cohort of LGBTQ adults in the country.
The web-based health study aims to enroll 100,000 people in the U.S. and its territories over the next decade. Those taking part in the survey must consent to annually filling out an online survey about their health and lifestyle choices, such as if they exercise regularly or if they smoke and drink alcohol.
"We are a study for and by the LGBTQ community. For that, we need as many voices and experiences as possible," said Dr. Juno Obedin-Maliver, a co-director of the PRIDE Study and an assistant professor of obstetrics, gynecology, and reproductive sciences at UCSF. "We ask that people stay connected and stay engaged."
Its launch comes amid concerns about the Trump administration's moves to remove questions about sexual orientation and gender identity from a number of federal surveys and research-based initiatives.
At the same time, there have been efforts at the local and state level to increase data collection about the LGBT community. Officials in San Francisco and Sacramento, for example, are working to add questions about sexual orientation and gender identity to numerous local and state surveys and health intake forms.
Without such information, LGBT advocates argue the health needs of the community cannot be adequately addressed. It is insight the PRIDE Study researchers aim to glean at a national level.
"We need to know what's happening with people's health, the good and the bad, in order to do a better job of helping them," said Dr. Ward Carpenter, director of primary care services at the Los Angeles LGBT Center and a founding member of the PRIDE Study's advisory committee.
It takes approximately 40 minutes to complete the PRIDE Study's annual survey, which can be accessed via a computer or any internet-connected device. Since announcing its call for participants last month, the study has already enrolled more than 5,100 people.
"We hope to get a really good representative sample, that is an aspirational goal," said Obedin-Maliver.
For now, LGBT people at least 18 years old can take part. The researchers hope to include youth age 13 to 17 by the end of 2017 and are working on being able to do so with the study's institutional review board.
"We really want to make it ultimately accessible to youth participants without parental consent," said Obedin-Maliver. "Clearly, with sexual and gender minority youth, if there is a requirement for parental consent it would limit some youth from being able to participate."
Among the early participants, younger people have been more apt to sign up, according to the researchers. To encourage people in older age groups to take part in the PRIDE Study, the researchers have partnered with the national nonprofit SAGE, which stands for Services and Advocacy for LGBT Elders.
"There is some sense people who are more advanced in age might be less comfortable with an online health information study. Mostly because it is online but also their comfort with disclosure in this type of setting," said Obedin-Maliver, who identifies as a cisgender lesbian and is in her late 30s.
Two years in the making
Work on the study began in 2015, with more than 18,000 participants enrolling and contributing to the study's development during its extensive pilot phase. Their input resulted in expanded electronic access, a customized dashboard for participants to view data, and enhanced security features for the study, noted the researchers overseeing it.
The pilot phase participants were also asked to vote on what topics to include in the actual survey. Their input led to the inclusion of questions about depression and anxiety, teen suicide, and the role of family support in health.
"At the same time in looking at those themes, we were also developing the technology and the platform to be able to do what we are now doing. We have a novel platform we created for just this study," said Obedin-Maliver.
The researchers customized the platform for the online study to include features the pilot phase participants had suggested. Those taking part in the PRIDE Study can see how many other people are in the study, for example, broken down by their different identities. They will also receive alerts about additional surveys they can fill out other than the yearly one they are required to complete.
They have also taken a variety of steps to ensure the participants' information and privacy is secure and protected. People's names and contact info is kept separate from their health information. And the study uses a certificate of confidentiality from the National Institutes of Health, which means its list of participants cannot be subpoenaed or revealed to outside entities.
"We have stringent privacy rules for the study," stressed Obedin-Maliver.
Participants do not need to be U.S. citizens, merely residing in the country or its territories. Although the survey does ask about the participants' citizenship, people can choose not to answer the question. As with their health information, their answers to the question will not be divulged to outside parties, noted Obedin-Maliver.
"I think there have been concerns in respect to the current political climate. That is something we want to ensure that cannot happen," she said.
In 2015 the Patient-Centered Outcomes Research Institute funded the study with a grant of $1,680,008 that runs through 2018. The total estimated budget for the study's first four years is $2,062,837, with private donations and funding from UCSF making up the difference.
The researchers hope to find additional funding sources so that the PRIDE Study will continue for decades to come. Its community engagement arm, known as PRIDEnet, will be ongoing and includes more than 40 partner organizations around the country, including health organizations, community centers, and national organizations that support or serve sexual and gender minority people.
A Spanish-language version of the study is also planned, but there is no date yet for when it will be rolled out.
To learn more about the PRIDE Study or to enroll in it, visit https://pridestudy.org/.
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