Community Research for Health Equity (CRHE) program, managed by AcademyHealth and funded by the Robert Wood Johnson Foundation (RWJF), supports community-led research to address local health care system issues of importance to communities of color, people with disabilities, LGBTQ+ individuals, and other historically marginalized populations. AcademyHealth developed a series of blog interviews to showcase and celebrate CRHE researchers. 

Over the next year, we will be featuring interviews with and blog posts about these grantees during relevant celebration and recognition months. In the first interview of this series, AcademyHealth Research Associate, Maura Dugan (she/her), speaks with Amy Stone Ph.D. (they/them), Professor of Sociology and Anthropology at Trinity University and collaborator on the Pride Center San Antonio CRHE project, to discuss the importance of LGBTQ research, their current project, and to celebrate LGBTQ research during pride month. The Pride Center’s project investigates factors that lead to health disparities and aim to reduce the impact of delayed or denied care for the LGBTQ community of San Antonio. Their conversation has been edited for length and clarity.

Maura Dugan: How did you select your research question (why this question, and why now)? 

Amy Stone: It came out of our previous RWJF work and our previous findings in the community report. The Pride Center realized there were really high rates of people being turned away from doctors, not wanting to go to doctors, from feeling mistreated by doctors.  We realized we don’t know very much about the actual health care LGBTQ people are getting. But more importantly, what kind of health care they are avoiding. 

Our question came out of this underutilization and what are the main factors driving it. What in that is fixable on our end, particularly if it’s about interactions with providers, which we think is a big piece of the puzzle. We can train providers to be more accessible. We decided with this project to be much more far reaching in terms of how we think about health care and to go beyond the usual.

We were very intentional in how we designed the survey. We ran a bunch of focus groups – we had one with folks with serious disabilities, we had one with trans and non-binary folks, we had one with BIPOC folks in the community and one with sexual minority women. 

We feel like a lot of LGBTQ health services are oriented towards the concerns of cisgender gay and bi men. And most LGBTQ funding goes towards HIV research. Which is important research, but there is more to the community and there are a lot of health needs not being met by that research.

We want to know more about the experience part, not just the risks, but the actual experiences of queer and trans people getting health care. And we are learning some complex things about that. We took a very holistic approach to designing the survey. Lex Loro (Director of Community Health at the Pride Center) did a lot of administrative work for the survey, and they got a lot of feedback from the community that they have never been asked those questions before. Which I think speaks to how intentionally we designed it. 

Maura Dugan: What have you learned from your study so far?

Amy Stone: There are places where we are very strong in engaging health care services. For example, the LGBTQ community has high rates of COVID vaccination and boosters, particularly among young folks. We learned that people know a lot about sexual health. People have strong social networks. People have someone close to them who cares about them, which is a really important aspect of health. People have a lot of interest in getting medical care. We also have learned that there’s a group of folks who are quite avoidant of medical care and who have been betrayed by it honestly. And that includes a lot of youth. We think it’s an artifact of youth being on their parents’ insurance. Then their parents would have access to that medical billing. It is great to be insured on one hand, to have that access, but then there’s some men on HIV who are not on PrEP because their parents will find out 

Our findings show that people are struggling health wise with the fact that not only are their needs unmet, but there’s so many people’s needs in the community who are unmet. That has a profound impact on their physical and mental health, so it kind of magnifies.

Maura Dugan: How does being part of the community of focus/embedded within your community inform your work?

Amy Stone: I think it deeply informs it. And some of the issues coming up are issues I’m seeing in the people around me. I’m seeing them in my own life, right? My own attempts at seeking health care. My own avoidance at finding a new general practitioner or whatever new issue. The amount of putting off that one does because it’s an extra layer of emotional work. 

I feel like my own personal experiences do shape the kind of work, but it also gives me a real sense of agency. I guess these are all things that I can have an impact on, instead of just feeling stuck with where they are. It’s really nice to feel like this is something where we could make an impact. 

Maura Dugan: How do you want to celebrate and think about your work, and the future of LGBTQ+ research, during Pride Month?

Amy Stone: I was talking to someone who works in the health care system yesterday and they said ‘We’re not even tracked. Nobody keeps track of us. We are not on surveys. People are too afraid to add gender identity and sexual orientation questions. They don’t know how to or they don’t care.’ And it just means that there’s not a lot of data on us as a community. And I see that radically changing. 

I like being part of that change. I also like seeing that there is more data available on queer health. Having a couple questions on who is LGBTQ revolutionizes the amount of data available. That small thing just changes everything. And I feel like celebrating that knowledge really is power. And I feel like celebrating the fact that we’re worth knowing about during this year’s Pride. We are worth including on anything. Even if that means there is something we need to work on as a community or someplace we need to make a change.  Celebrating the fact that we’re included in that knowledge building and information is important. We are included in research more and more every year. 

There’s a lot of unmet medical needs in San Antonio in general. Our research is ultimately about racial justice, because we’re in predominantly a community of color, and about economic justice, because we’re predominantly an impoverished community. It’s about all those aspects at the same time while also being about queer justice. It feels good working in that intersection of saying hey, we can make change that impacts people on a meaningful level.

If you would like to read more about the Pride Center’s CRHE grant, you can view that here. If you would like to watch an interview with Amy Stone reflecting on the value of community-led research, you can view that here. This work is made possible with a grant from the Robert Wood Johnson Foundation (RWJF). The views expressed here do not necessarily reflect the views of RWJF.

Maura Dugan Headshot

Maura Dugan

Research Associate - AcademyHealth

Maura Dugan is a Research Associate that supports a number of The Robert Wood Johnson Foundation (RWJF) grantm... Read Bio

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