Give the Gift of Research by Joining ALL OF US
"There's a gap in medical research that only you can fill" is the bold-faced first line of All of Us's website. "You're one of a kind, and that's kind of our thing."
A program of the National Institutes of Health, All of Us aims to invite one million or more people across the United States to build history's most diverse health database — especially an oft-overlooked population. PRIDEnet, based out of Stanford University, is a National Community Engagement Partner with All of Us, with a focus on engaging the LGBTQ+ community.
"All LGBTQ+ Americans deserve to be seen, heard, and understood — especially when it comes to medical research," says Ana Rescate, MBA, PRIDEnet Communications Specialist. Inclusion is a major goal of PRIDEnet's work with All of Us. Rescate adds, "Understanding how lifestyle, genetics, and environment affect the health of the queer community is what inspires the research."
Fixing Queer Exclusion — and Mistrust — in Health Research
According to Rescate, All of Us aims to fill a crucial gap. "LGBTQ+ people, like many other groups, have often been left out of medical research," she says. "As a result, the medical community knows less about LGBTQ+ health and ways to provide them with the best care. This program will hopefully change that."
Rescate is also aware of lack of trust in health research that often exists among LGBTQ+ individuals — she and PRIDEnet make sure to directly address this issue in several ways, including representation, which is crucial to all parts of the process. "We don't only engage the LGBTQ+ community, many of us are also part of the LGBTQ+ community," Rescate says. "LGBTQ+ researchers can bring a lived experience lens to conducting the research, which can often help to better understand the relevant cultural considerations when it comes to developing research questions, analyzing data, and engaging with the community... in a way that does not 'other' them."
PRIDEnet also maintains communication with prospective and active participants, and provides easy ways to connect. "One of PRIDEnet's approaches is to make sure that community members have a way to reach us," Rescate says. "We connect with people via our social media channels, email and at community events." You can find PRIDEnet's presence at LGBTQ+ conferences and events like Pride and Transgender Awareness Week, and the organization produces its own events, both online and in-person. Additionally, PRIDEnet collaborates with partner organizations to review and distribute All of Us materials.
And it's not just one-way communication: According to Rescate, PRIDEnet prioritizes and actively listens to participant feedback. "We bring the [LGBTQ+] community questions and input we receive back to the program, and work with All of Us to address them," Rescate says. "We also encourage people who have already joined to provide testimonials on why participating in All of Us was important to them." Finally, Rescate notes, PRIDEnet shares with All of Us participants how their information will be used — and protected.
Intersectionality and Inclusion
Of course, the LGBTQ+ community and its experiences are diverse and varied — a truth PRIDEnet embraces. "The LGBTQ+ community is not a monolith," says Daniel Moretti, MSc, who serves as PRIDEnet's Community Engagement Lead. "Our staff, our community partners, and our collaborators such as our Participant Advisory Committee and Ambassadors reflect a diverse range of identities within the LGBTQ+ community, which helps improve the work we do."
PRIDEnet works with All of Us partners to convene advisory groups that focus on intersectional identities. Advisory groups include the African American Sexual and Gender Minority Advisory Group, Asian American Native Hawaiian and Pacific Islander Sexual and Gender Minority Advisory Group, Hispanic/Latinx Sexual and Gender Minority Advisory Group, and People Living with a Disability Sexual and Gender Minority Advisory Group. Says Moretti, "Recognizing the complex and layered identities of the LGBTQ+ community is central to PRIDEnet's work."
Be a Part of It
Though All of Us's data collection is ongoing, research has already begun — and several projects pertain directly to the LGBTQ+ community. According to Moretti, "a few examples include looking at cardiovascular risk among LGBTQ+ people and exploring the health conditions of gender-diverse individuals — such as transgender and non-binary communities — including experiences around preventative services such as cancer screenings." He encourages everyone to check out the All of Us Research Projects Directory, in which interested individuals can search by keyword to "find research involving specific communities or specific conditions."
As of July 2022, more than 347,824 people have signed up for All of Us, 32,274 of which identify as LGBTQ+. There's still time to be part of the program and help effect positive change for LGBTQ+ individuals everywhere. Says Rescate, "Joining the All of Us Research Program is a chance to help speed up medical research that will benefit you and your community."
To join All of Us, sign up here. You can also register in-person at any PRIDEnet table at community events and conferences. For more information about the program, join an online information session or follow All of Us on Twitter, Facebook, and Instagram.
EDGE Media is an advertising partner for All of Us New England. To learn more about joining All of Us in New England, please visit JoinAllofUs.org/NewEngland.
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Lauren Emily Whalen lives in Chicago. Her fifth novel, "Tomorrow and Tomorrow," cowritten with Lillah Lawson, will be released in October 2023. Learn more at laurenemilywrites.com
Sources:
• Catie Murphy (she,her,hers), Marketing and Communications Coordinator, All Of Us Research Program — New England Consortium, [email protected] , (617) 894-5314,
• Ana Rescata (she, her, ella), MBA, Communications Specialist, [email protected] .