Northwestern’s Institute for Sexual and Gender Minority Health and Wellbeing has grown immensely for nearly a decade, expanding into community outreach and becoming one of the largest organizations in the world focusing on this research.
“Community engagement is baked into our DNA,” Brian Mustanski, director of the institute, said.
The institute, born from one of Mustanski’s labs in 2015, began more in the space of epidemiological research but has grown into “implementation science,” which he described as, “When we know something works, how do we get it implemented into practice?”
“We can’t discover something and then have the community wait 17 years to benefit from it,” he continued. “One of the things the institute is really a national leader on is, how do we disseminate our findings in creative ways? How do we package our programs and interventions that we develop so that the community can start using them much more quickly?”
The institute has launched programs such as PrEP 4 Teens, an initiative that helps young, queer teens make informed decisions about their sexual health and supports HIV prevention, particularly in areas with high rates of HIV. Illinois is one of a few states where minors can access PrEP without their parents’ permission, “but a lot of teens don’t know this,” according to Mustanski.
To spread word of the program, the institute has commissioned murals across the city, alongside fashion shows and balls, to get the word out in creative ways that tap into youth culture. The institute’s efforts are the only CDC-recognized program increasing PrEP use, he added.
One of the institute’s largest studies is RADAR, a study seeking to “provide critical insights into risk and protective factors for HIV and drug use,” according to the institute’s website. RADAR has recruited more than 1,000 participants over its decade of existence, utilizing a community advisory group to disseminate findings back into the community.
It’s “essential” for the institute to work hand-in-hand utilizing its research to strengthen outreach, according to Jagadīśa-devaśrī Dācus, who serves as the institute’s associate director. The institute prioritizes hiring from within queer and minority communities as well, to ensure a “nuanced understanding and perspective.”
“Community is the authority and provides and helps guide our research,” Dācus added. “If we were to do research in a vacuum, we can conduct really fantastic studies, but they may not have any real-world application. … By working and engaging with communities in the process, we can assure that we have research that is cutting edge and can be applied to the issues or challenges facing the communities.”
Erik Elías Glenn, associate director of the institute’s EDIT program—which has served to improve the health outcomes and equity of sexual and gender minorities through community-based partnerships—pointed to the disproportionate lack of data most health services have on sexual orientation and gender identity. Through programs like EDIT, the institute looks to bridge that gap, “so we can understand our state of being and our disproportionate burden when it comes to certain health disparities,” he said.
He added, “One of the main questions when it comes to any research and evaluation work is, what’s the purpose? Why are we doing this work? It’s more than a thought experiment. It’s more than intellectual exercise. And for many people at the institute, it’s actually a personal connection to our own identities and our own personal community affiliations. … We lean into work that not only sees these real lives, but values real community, voices and lives in a way that invites them into the decision making process.”
Alongside local efforts, the institute hosts the national LGBTQ Health Conference, which brings hundreds together every other year to present new research in LGBTQ health and mental health. The Institute for Sexual and Gender Minority Health and Wellbeing also hosts monthly conferences, all available on its YouTube page.
The institute also pushes Northwestern itself “to be more inclusive and more just,” Glenn said, so as “to leverage everything we can in service of superior health for sexual and gender minorities, outside and inside the university.”
“I think that there is a natural tension between the structure of a university and bias for work that emphasizes redistributed justice, inclusivity, liberation and abolition,” he added. “And who’s going to do that? Who’s going to enter into those conversations to help reconcile this and to even move the university to a place that is more inclusive and just?”
Having more than doubled its faculty in just the past few years, there are no plans to slow down the institute’s efforts. Mustanski said he hopes to continue expanding research into health disparities among queer women and suicide prevention, as well as more training for health workers, such as clinicians and those who work in public health.
With a decade under its belt, Dācus said he hopes they can continue going full steam ahead into the next 10 years.
“I would still like to see our institute continue to be at the forefront doing this type of work with sexual and gender minority communities,” he shared. “I would like for us to be able to grow in a way where we have not just a rich diversity of research areas in which we focus on, but also prominent people at the forefront doing that work.”