Opportunity Us Looks at COVID-19’s Impact on Black and Latina Women of Transgender Experience

Howard Brown Health and the EDIT Program at the Institute for Sexual and Gender Minority Health and Wellbeing (ISMGH) recently received funding for Opportunity Us, a participatory research project examining COVID-19’s impact on Black and Latina women of transgender experience, from the Racial Equity and Community Partnership grants program. This Northwestern University grant program provides funding for ideas that address systemic problems of racial inequity in neighborhoods around Chicago and Evanston.

We spoke with Dylan Felt, a research project coordinator for the EDIT Program, about Opportunity Us and the importance of involving trans communities in every stage of this research.

What do you hope to learn from looking at the impact of COVID-19 specifically on Black and Latina women of transgender experience? 

We’ve known essentially since we first started COVID-19 surveillance in the U.S., and really we suspected even before then, that this disease like many others will have a greater impact on communities who are already medically underserved and already experiencing significant health disparities. So, we expect to see that COVID-19 has had a particularly significant impact on highly marginalized communities like Black and Latina women of transgender experience. What we don’t know is what that has specifically looked like in terms of the everyday lives of these communities. How has the pandemic altered how these women access work, housing, or food? What about love, joy, and community? How has it impacted their ability to give and receive social or familial support? This is also an opportunity to take a strengths-based approach to our research in not just asking questions about disparities or negative experiences, but also seeking out stories of strength, resilience, and community care. I think this project will teach us a lot about how communities care for each other and survive together without the support of our social or medical infrastructure, and will also be a chance for our social and medical infrastructure here in Chicago to learn more about how we can do better by these communities both now and in the future.

What is participatory research and what is the reason behind this form of research for this project?

Essentially, participatory research is an umbrella term that describes when community members (i.e., members of the target population that a research project is interested in), take on a role as research team members, sometimes in addition to a role as study participants. There are a lot of really cool theories and frameworks of participatory research that exist out there, and EDIT has really developed our own identity as a community-engaged participatory research program that embraces tenets from a number of these approaches. For us, and for most participatory research practitioners, participatory research means that community members are involved in the research process from beginning to end. From the germination of an idea to the termination of a study, community members are in the room, have a voice and are part of the decision-making process. There is a really spectrum of participation, of course, and within academia, this is sometimes done well and sometimes not so well. One way that EDIT tries to set ourselves apart a little bit is through embracing the reality that we don’t always need to be the primary driver of the research we participate in. Sometimes, community members will have ideas for research projects that are, frankly, better than anything we’ve thought of. To us, this feels like the purest form of participatory research where instead of conceptualizing of community members as participating in a university-based research project, suddenly we, the university-based research team, are the participants in a community-owned research project. For this project, we wanted to take a participatory approach for two major reasons. First, Black and Latina women of trans experience are over-researched and under-resourced. An incredible amount of money has, over the years, gone into generating data about the lives and experiences of these women that has done relatively little to actually improve their lives. A participatory approach is frankly necessary as a reaction to that history. Second, it’s my firm opinion that participatory research gets you better data. Participatorily structured teams can identify questions that academic-only teams wouldn’t have even thought to ask. They reach community members that academic-only teams might not have known how to find. It opens doors to not just collecting data well, but USING it well to make a meaningful difference in the lives of the community members you’re working with. We’re coming in in the middle of a pandemic that has wreaked havoc on marginalized communities globally – in my opinion, the only ethical research approach at this time is one which puts those communities first.

How will Howard Brown Health (HBH) and EDIT be working together on this project?

HBH and the EDIT team have an existing relationship which we’ve been fortunate enough to develop over the course of several research and evaluation projects that we’ve worked on together. For this project, HBH is in the driver’s seat, and EDIT is filling a supportive role. Whereas HBH has taken the lead on developing the project and the grant application, and will be primarily responsible for implementing all project elements, EDIT is here largely as a consultant. We’re participating in brainstorming sessions to develop and then refine our project aims and aspects, and we’re lending our expertise as program evaluators to help ensure the success of this work from conception to conclusion. At this stage of my career, one of the most exciting things that happens to me is when a community-based collaborator comes to my team with an idea, and tells us that they want our support making it into a reality. That’s what happened with the Opportunity Us project, and we’re grateful to have been able to confidently and competently fill that role.

Is there anything else that you would like folks to know about this project?

One of the things I’m always proudest of in EDIT’s work is that we do our best to put community voices front and center. For Opportunity Us, that means a few things: On both the HBH and EDIT teams, this project will feature trans leadership and staffing; We are involving trans students in support and learning roles; We will be engaging participants as participant-evaluators to provide our project with the necessary perspective to be successful, and to provide these participants with paid professional development opportunities that will hopefully open doors for careers in health services, public health, and research. I really believe that the future of research is community-driven, and I’m happy that this project can be one small part of moving us towards that future.

Read more about the 2021 Racial Equity and Community Partnership grant recipients here.