Since it was founded in 2015, Northwestern University’s Institute for Sexual and Gender Minority Health and Wellbeing (ISGMH) has become a leader in sexual and gender minority (SGM) health research and intervention programs. The institute is the brainchild of Brian Mustanski, PhD, director of ISGMH, and grew from his IMPACT LGBT Health and Development Program, which has been conducting translational research with SGM youth populations for over a decade. With June being LGBTQ Pride month, the importance of IGSMH’s work in achieving health equity for all SGM individuals is only elevated further.
ISGMH was also established during a critical period in LGBTQ history, the same year the U.S. Supreme Court legalized same-sex marriage in all fifty states. According to Mustanski, in the midst of changing social attitudes towards same-sex marriage, it was also made clear that the same attention and protections were not being extended to the health and wellbeing of LGBTQ people. In response to the need for more SGM health research, ISGMH was launched.
The mission of ISGMH is to connect scientists and scholars from various disciplines and forge collaborative research opportunities aimed at advancing health equity for the SGM community. All ISGMH research belongs to one of the institute’s three distinct research programs: the CONNECT Complex Systems and Health Disparities Program, the Evaluation, Data Integration, and Technical Assistance (EDIT) Program, or the IMPACT LGBT Health and Development Program. The institute also provides research and training opportunities for new SGM scholars and healthcare providers in response to the lack of SGM representation in the STEM workforce.
While the field of SGM health research is still relatively new, health equity for the LGBTQ community has remained an area in constant need of attention and data-driven research, according to Mustanski, as LGBTQ individuals continue to experience health disparities and face challenges accessing care. But the institute is determined to change that through expanding the field of SGM health research, establishing research initiatives and advocating for the LGBTQ community.
“Sharing our mission to achieve health equity for all LGBTQ people is important all year, but especially during Pride month when so many people outside of the LGBTQ community are paying closer attention to our voices,” said Mustanski, who is also a professor of Medical Social Sciences and of Psychiatry and Behavioral Sciences.
Ending the HIV Epidemic
At the Third Coast Center for AIDS Research, of which Northwestern University is a partner, Mustanski leads the Implementation Science Coordination, Consultation, and Collaboration Initiative (ISC3I) with ISGMH affiliate faculty member Nanette Benbow, MA, research assistant professor of Psychiatry and Behavioral Sciences, and ISGMH faculty member Dennis Li, PhD, MPH, assistant professor of Psychiatry and Behavioral Health Sciences.
ISC3I is the coordinating and technical support center for 65 planning projects funded under the national Ending the HIV Epidemic plan, which aims to expand collaborative research to end the HIV epidemic in the U.S. by the year 2030, as well as speed up the development and translation of scientific innovations to improve HIV prevention, treatment and care.
The initiative is funded by the National Institutes of Health through ISGMH and the Third Coast Center. The Third Coast Center is part of a national network of 17 NIH-funded and independently operated academic research centers tasked with supporting multidisciplinary research to reduce the burden of HIV in the U.S. and around the world. The center is a partnership between Northwestern, the University of Chicago and community partners in the city and state health departments.
“For HIV, we now have the appropriate tools — for HIV prevention, diagnosis, treatment and outbreak response — to prevent the spread of HIV in the U.S. However, we still face many barriers in getting the right tools to the right people in the right ways at the right time,” Li said.
According to Li, ISC3I has two distinct goals: to support high-quality implementation science through expert technical assistance on implementation designs, frameworks, strategies, measures and outcomes, and to create opportunities to develop generalizable knowledge from local knowledge through cross-project information sharing, measure harmonization and data synthesis.
Through training, an online community of practice, expert coaching and efforts to standardize measurement, Li and his team hope to increase the capacity of HIV investigators to conduct high-quality implementation research, as well as synthesize findings from across the country to inform best practices for creating and delivering HIV prevention efforts, treatment and services.
“ISC3I activities and services support the implementation research being conducted across the country so that we can more effectively and efficiently reach patient populations and deliver — with high quality — the right interventions for them,” Li said.
Understanding HIV Disparities Among Racial and Sexual Minorities
Recently, ISGMH faculty member Michelle Birkett, PhD, assistant professor of Medical Social Sciences, Preventive Medicine, and director of the ISGMH’s CONNECT Complex Systems and Health Disparities Research Program, was awarded an RO1 grant from the National Institute on Minority Health and Health Disparities. Her project will use simulation modeling to understand HIV disparities among racial and sexual minorities in Chicago, and also aims to understand how systemic racism and homophobia contribute to the disproportionate burden of the disease within these populations.
“Racial, ethnic and sexual minority populations are disproportionately impacted by HIV and other infectious diseases, with black men who have sex with men bearing a disproportionate burden,” Birkett said.
For the project, Birkett’s team will utilize data from social interaction systems and physical spaces inhabited by racial and sexual minorities to extend a modeling framework called chiSIM, which was developed to simulate the physical movements and daily interactions of approximately 2.9 million Chicagoans, according to Birkett.
“By simulating these movements and connections of individuals, our team will be able to examine how disease outbreaks occur, which can then help guide intervention development,” Birkett said.
The ultimate goal of this research, according to Birkett, is to use simulation modeling to support the development and implementation of public health strategies and interventions to help eliminate systemic inequities that play a large hand in determining an individual’s access to appropriate care and the health risks they’re exposed to.
“Simulation work like this allows us to quantify exactly how these attitudes shape real-world, large-scale population structure and, in turn, shape disease spread. That is the first step in creating public health strategies that are targeted toward the elimination of HIV disparities,” Birkett said.
COVID-19 and the SGM Community
On the front lines of the COVID-19 pandemic are numerous ISGMH faculty members conducting groundbreaking research exploring the impact of the pandemic on SGM individuals and helping develop an at-home COVID-19 antibody test.
Recently developed by a team of Northwestern Medicine investigators including Mustanski, the novel test is able to determine whether patients have immunity to SARS-CoV-2, the virus that causes COVID-19. The test is the first of its kind, combining the convenience of finger stick blood sampling in the home with the quality that can be applied in the lab.
“It is an urgent priority to gain an understanding of how many people who are infected with SARS-CoV-2 develop antibodies and in what types and quantities, how long those antibodies take to develop and persist, and how protective antibodies are against later re-infection,” Mustanski said. “But current approaches to antibody testing have significant limitations: Point-of-care tests using finger stick blood are qualitative and often inaccurate, while more precise lab-based tests require venous blood.”
The test, which was detailed in a preprint study published in May, aims to promote widespread COVID-19 screening as the test is inexpensive, relatively painless and can be done at home.
Specifically, Mustanski has been responsible for leading the ISGMH statisticians and software programmers to develop a “no physical contact” system to enroll, survey and track participants as well as securely return test results. As part of this effort, the team adapted technology used to study at-home HIV and sexually transmitted infection testing for young gay and bisexual men. The team also helped help craft research questions that focus on understanding and addressing the racial and geographic disparities in COVID-19 across Chicago and the U.S.
“In addition to our team’s focus on SGM communities, ISGMH investigators draw from an intersectionality perspective and have achieved excellent recruitment of racial and ethnic minority participants in our research. We are leveraging that experience to support enrollment into the current COVID-19 study,” Mustanski said.
Other ISGMH faculty members have also been heavily involved in research exploring the impact of the COVID-19 pandemic on SGM individuals. ISGMH faculty member David Moskowitz, PhD, research assistant professor of Medical Social Sciences, is the director of ISGMH’s SMART project, an online HIV prevention randomized control trial focused on delivering sexual health and sexuality affirming education to over 1,200 SGM young adults.
In response to the spread of COVID-19 pandemic, the project was updated in April with questions asking participants about their experiences with COVID-19, such as their proximity to the pandemic, precautions taken and general health questions.
“Many of the teens were enthusiastic and thankful to be able to contribute to COVID-19 solutions and felt that their voices were being lost or minimized because of the focus on adults. Conversations about sexuality have also been absent from the COVID-19 social media, public health and news dialogues,” Moskowitz said.
Data analysis for the project is still ongoing, however Moskowitz said that from the data his team has examined so far, it’s clear that identifying as a minority sexual orientation as a young adult adds to the ordinary stress associated with living during the pandemic.
Another ISGMH led initiative that is helping to understand the impact of COVID-19 on SGM individuals is the Evaluation, Data Integration, and Technical Assistance (EDIT) program, which is dedicated to furthering health equity for marginalized populations, particularly SGM populations and individuals who identify as black, indigenous or people of color.
The program is overseen by ISGMH faculty members Gregory Phillips II, PhD, assistant professor of Medical Social Sciences and of Preventive Medicine in the Division of Epidemiology, and Lauren Beach, PhD, research assistant professor of Medical Social Sciences.
The overarching goal of EDIT is to connect national research projects which study the nature of disparities in health between majority and minority groups with local, community-engaged efforts in order to promote and create health equity.
Recently, the program was re-focused to respond to the COVID-19 pandemic through efforts that examine the physical, psychological, economic and social impact of the virus on SGM individuals and people with HIV. The program is also currently contracted to serve as the external evaluator for all community agencies and organizations funded by the Chicago Department of Public Health to provide HIV prevention and care services.
“We are adapting our current evaluation plan to ensure we understand what these organizations needs are right now, but also ensure we’re highlighting the creativity, dedication and determination that organizers and providers on the ground are bringing to the fight against COVID-19 — not just to uplift them, but also to inspire others to follow their lead where appropriate,” Phillips said.
The team is still in the process of collecting data, but what they do know is that marginalized communities, including the SGM community, will need additional support that is more readily available, accessible and appropriate during the pandemic, according to Philips.
In the long term, they hope their findings serve as evidence that public health initiatives need to include specific strategies that ensure equitable health outcomes for marginalized populations.
“If we aren’t even making an effort to understand what impact this virus is having on the SGM population — when there’s already plenty of evidence that SGM people may face inequities — then we’re making clear where our priorities lie, and that they don’t lie with LGBTQ+ people. That’s unacceptable,” Phillips said.
