Mitchell R. Lunn on the role of queer community engagement in health research

Mitchell R. Lunn, Co-Director of The PRIDE Study at Stanford University School of Medicine | In conversation with Maggie Lee

Did you always intend to apply your med school studies to the type of work you’re doing now?

Absolutely not! In undergrad, I was very interested in basic science and understanding the molecular mechanisms of various parts of health and disease. Then, in medical school, I met some friends, colleagues, and even my dear friend Juno Obedin-Maliver, who's now my co-director on The PRIDE Study. The two of us started looking at the lack of medical education for LGBTQ+ health — for providers, for future doctors being trained to take care of LGBTQ+ people. That really began my foray into LGBTQ+ health. At that point, I wasn't completely sure that's what I would be doing for my real life job. But it became clearer as the years passed. Not only were people not being taught about LGBTQ health and how to take care of queer patients, but there just continued to be a lack of data about queer people's health on the whole. And that was probably why people weren't being taught a lot about it — there was no data to really teach. So it was a good time to create a study to research LGBTQ people's health.

You’re referring to The PRIDE Study. How did that develop?

Juno and I looked into how much — or how little — medical schools were teaching about LGBTQ+ health. After Stanford, I went to the east coast for residency and Juno went to UCSF for an ob/gyn residency. But later, when I came back to California for a nephrology fellowship for kidney disease training, we were in the same place again and the interest in researching LGBTQ+ people’s health came back to us. We initially thought it could be a study of LGBTQ providers, meaning providers who identified as queer people, thinking about their own community’s health and well being. But then we soon thought, well we're so close to Silicon Valley, why can't we develop ways of using technology and actually start studying the wider LGBTQ population’s health itself? And so it began and has really grown since then with grants and so on.

Silicon Valley money?

We actually did not get Silicon Valley money, no. We got a little bit of donations — a little help from Salesforce for some design on our website initially. But after that we’ve primarily been funded by the Patient-Centered Outcomes Research Institute (PCORI), which was created as part of the Affordable Care Act. We've also gotten National Institutes of Health money.

When you said it was founded on the idea of using technology to study the population’s health, were you talking about what you’ve named PRIDEnet?

Not exactly. PRIDEnet is our community engagement arm. It’s a network of people and organizations across the country who are champions, advisors, and spokespeople for our research projects. The technology part primarily is the fact that we're an online-only study! Most research studies, you go to an academic medical center like Stanford and meet a research coordinator there to do enrollment, and then to do bloodwork and other testing that may be related to the project. But with The PRIDE Study, it is completely digital, so I've never met 99.9% of the participants.

We do look at ways of providing value to people digitally for their participation, which includes finding ways to give back in explaining the research results. That’s where PRIDEnet comes in. We're a community engaged research project and like the community to be involved every step of the way. So it’s not academic medicine just deciding the research questions that get asked — the community helps us define which questions are important and how the data should be analyzed. And then that same community participates in the research, and we disseminate the results back to them. It's very, very common in research for the results to never make their way back to the people who participated in the study, and we think that’s wrong. Having this community engagement network helps us really spread the results and keep the community involved in what we’re learning.

That whole engagement arm of the study sounds like it possibly requires additional skill sets beyond medicine. What does the wider team look like? Is everyone coming from a medical background?

Juno is an ob/gyn, and our associate director, Annesa Flentje, is a faculty member at UCSF and a clinical psychologist. But then we have a lot of folks in different roles. Micah Lubensky, our participant engagement director, has his PhD in social psychology. Zubin Dastur, our digital clinical research manager, has a masters and MPH level training, more on the research side of things. Carolyn Hunt and Mahri Bahati are both part of our community engagement arm, so they have experience with mobilizing, activism, and advocacy. Ana Rescate, our communications specialist, has an MBA in marketing. So we have a slew of diverse skills and experiences.

Is there anything in particular that your team is most excited about right now?

We're still pretty early in the research process, but I think we’re hitting a new groove. We now have so much data, frankly, that we needed to bring on a set of trainees at all levels — undergraduate students through postdoctoral fellows — as well as some faculty members at other institutions to start analyzing what we’ve gathered. So I think that is really exciting. We have work that's been happening on eating disorders, alcohol use, anxiety and depression, as well as contraception and family building, including abortion. I think really all of these topics are interesting and needed. There's so little describing any health experiences of LGBTQ+ people that even some of these rather simple, descriptive studies are going to be incredibly helpful for understanding various scenarios moving forward.

Do you have all the data you want now, or are you looking for more people to participate?

We are always interested in more people participating! You can enroll whenever you want by going to pridestudy.org. The current criteria is that you have to be at least 18 — which we eventually want to change, because people's identity formation happens, of course, before they're 18. You have to live in the United States or its territories, it’s only in English — another issue we’d eventually like to change — and you have to identify as a sexual or gender minority person. There's no test for that. If you agree to those four things, then you can sign up!

Participation is an annual questionnaire. One hour, once a year is kind of what we say. But we do have surveys periodically that are shorter and on particular topics — on eating behaviors and body image, or sun exposure and UV exposure from the outdoors, indoors and tanning beds, or on family building processes and contraception. A whole slew of things. Vaccinations! That’s a relevant one. Another thing to note is that we don't pay people to participate, but we do have numerous drawings throughout the year for people who have completed the annual questionnaire or those topic-specific surveys. You're entered into a drawing for electronic gift cards.

And you said that you share results — do you mean the study’s larger results, or individual results of some kind?

Not usually individual, though we're thinking about ways in which we could show people what their data helped inform. Right now, we share when a scientific paper our team writes is done. We always make sure that the participants are the first informed about that, before funders or anybody else. We also write a community-friendly summary of the findings, because oftentimes, scientific papers are written in rather scientific language that is not very accessible. Similarly, those papers are oftentimes behind a paywall, where you have to pay $30 to $50 to access it, which doesn't really make it accessible either. So instead, we create these community-friendly summaries, which are written between a 10th and 12th grade reading level and are posted to our website. And then those get sent out in a newsletter, we use social media to share certain things, too. We also have what we call PRIDEnet Cafes, which are monthly meetings people can join via Zoom, and the researchers present their findings in more friendly and interactive ways than just a scientific paper.

There’s actually a subject I came across that I’d love for you to break down into more accessible terms for me: precision medicine versus precision population health. If I’m understanding it right, Is this where the distinction lies between what you studied and what you’re doing now?

In a way. But these are both evolving, in my opinion. The example of precision medicine that many people use is eyeglasses. If you were to give me your glasses, I probably wouldn't be able to see anything, right? They are tailored specifically for you. As science is getting better, and as things are getting cheaper, we'll soon be able to do more and more precision work on an individual level. So that’s a basic explanation of precision medicine and how it’s evolving. But precision is also important to look at from a population’s perspective. How can we work towards having precise solutions for so many health disparities within entire populations?

Sexual and gender minority people are a health disparity population for research by the NIH — we've been designated as a population that doesn't have a lot of research being conducted on it outside of HIV/AIDS primarily, and we know it’s important to think about what other specific research needs to be done to better the health of the entire LGBTQ+ population. So some things may be generalized for that purpose, but we also know that there's not necessarily a one-size-fits-all for every LGBTQ+ person in the United States, and that’s where the need for precision population health comes in. Things that are tailored to an individual population or individual identity group will be very helpful in addressing a lot of health disparities, but some things are still going to need to be done on an individual level. That process will evolve, but I think it’s going to take some time. We may look into whole genome sequencing on every person or other really molecular profiles of people's health on an individual basis. Right now that is very expensive, but I think it will be getting cheaper and cheaper. And the more research and data we have, the better we can help that along.

Do you think education systems, workplaces, and so on could learn from the medical community regarding its approach to addressing needs on both individual and population levels, to some extent?

The challenging part is that workplaces tend to treat all people in the same job the same way. And that's probably good for consistency and equity. At the same time, I think there is a fair amount of extra work that needs to be done to really welcome people who have not necessarily been involved in “X” before, or may have been actively prevented from being involved in “X”. Historical oppression is hard to counter unless you make specific efforts toward doing that. I think that there are ways to really welcome everybody, and sometimes having the more tailored approach as opposed to a one-size-fits-all approach is the better and actually more welcoming way. Just like in health and medicine, I think the ways of doing that are hard, and we need to study them, analyze them, and keep the lines of communication open with the people they impact.