One of the goals of the BTC study is to respond to the feedback we received from key informants (KIs) on how research with the transgender community should be conducted versus how it has been in the past. Time and time again, we were reminded that researchers drop in and out all the time, promise good things, and rarely follow up. Many of our key informants were frank about this and expressed their frustrations. It meant a lot that they were so open and honest with us about their emotions. Below are some quotes from a few of the KIs we interviewed. It captures the major criticisms we heard and are trying to learn from.
I think there's kind of a distrust, especially when it comes to medical places... because they're so used to hearing studies, and I think it's important for the people that are doing these studies to really put into perspective, for the people that participate, really the nature of what is going on... Why are you doing this for the community, and how is the community going to benefit? Because sometimes the community feels like we're being stripped of information.
Here's a summary of what we heard:
Researchers need to be transparent about their plans, intentions, timeline and goals.
It is important to make sure the transgender community benefits from research.
Have a presence in the transgender community (attend events, show up, etc.) and build partnerships with organizations that already have positive relationships with the transgender community.
Make sure people are compensated for their time and effort (provide incentives), especially given many transgender people struggle to find adequate employment.
Work with and employ members of the transgender community where possible.
These are all things we, as a research team, have worked hard to remain accountable to. For example, before every in-person interview, we made sure to explain the purpose of the BTC study and what our research will accomplish. This website is part of that as participants could be referred here if they wanted to read more about our process. For participants who completed the survey online, we used the consent form to share this information. We tried to be clear about what we hope to accomplish with this study as well as the potential benefits of participating, in an accessible way. All participants were made aware that in the short term, the only benefit to participating is a gift card and positive feelings associated with contributing to research intended to support the transgender community. We also welcomed questioning and challenging from participants, as well as conversation about mistrust of researchers.
From the beginning, our research plan was developed in collaboration with members of the transgender community and their allies, specifically through a partnership with the Transgender Response Team (TRT) and the co-chair of the TRT, the amazing Jean-Michel Brevelle, a fierce transgender advocate and leader. At every step, we check in with the group. For example, they reviewed the first draft of our survey and our website. We have also worked hard to build relationships with various service providers and local trans organizations during key informant interviews. We keep in touch with our community partners regularly, through our website and Facebook pages, and directly, by sharing personal monthly emails about where we're at with the BTC study.
Having a presence in the transgender community is another priority for our research team. We have tried our best to show up for the community to support their work (e.g., events, National Transgender Day of Remembrance, marches and rallies, volunteering at the Transgender Action Group, etc.) whenever possible, not only as researchers, but as allies working toward accomplice-ship. Sometimes, attending community events was not only a chance to support a community we care about, but also a chance for us to share information about the BTC study. For example, we shared flyers at a National Transgender HIV Testing Day event and also did some recruitment at local bars and clubs, even at PRIDE. Other times, we
We're really excited to get all of this data out there and recently, we've spent some time thinking about how best to share the results of the transgender health studies our team has been involved in, with local transgender communities and stakeholders. Through conversations with the Transgender Response Team and the Baltimore Transgender Alliance, we came up with an idea: an accessible and engaging option may be to host topic-specific (e.g., housing, stigma & discrimination, HIV, etc.) data sharing sessions. The plan is to compile data on a topic from various transgender health studies our team has been involved with, and to create space to (1) reflect on the data, (2) check the data, (3) do some agenda setting, and importantly, (3) talk about how the community can use the data for advocacy and action. To figure out what those sessions should be about, we have reached out to our community partners! We will keep you posted as these sessions are planned and scheduled!
BTC has been and continues to be a learning journey for all of us, as researchers and as allies!