Subscribe
Share
Share
Embed
Research and Justice For All is a podcast from Health Affairs that provides perspectives on how to dismantle unjust systems and structures that have long impacted health outcomes in historically marginalized populations. Hear how to challenge injustices in health care – rooted in racism, sexism, ableism, and other forms of exclusion – through research, evidence, community-building, and other potential and innovative solutions.
Each season of the podcast is sponsored by organizations dedicated to eliminating health inequities.
This is Research and Justice For All, season 2. And I'm your host, Rhea Boyd. Thanks for joining us today. Today, we're gonna be talking about LGBTQIA plus health and health care rights and policy. This is a super important topic.
Rhea Boyd:And at least in my training, it's not something that was really taught or championed in medical school or when I was in public health training. It's also a topic that's increasingly relevant and one that we have to continue to stay up on and address. And so I'm really grateful to be joined today by doctor Alex Keuroghlian. Alex is the director of the division of education and training at the Fenway Institute, an institute based at Fenway Health. Alex, welcome to the pod, and tell us more about Fenway Institute.
Alex Keuroghlian:Thank you, Ria. Great to be here, and happy to tell you more about the Fenway Institute. We're based at Fenway Health, which is a federally qualified health center in Boston that's over 50 years old. And from the beginning, Fenway has been focused on providing the highest quality care for sexually and gender diverse people. It's unusual as a health center in that Fenway has an institute, the Fenway Institute, that focuses on research, education, training, advocacy, and policy for LGBTQI plus people and people living with or at risk for HIV.
Rhea Boyd:Wow. That is kind of unusual. Actually, do you know of other FQHCs that also have institutes like that?
Alex Keuroghlian:Yeah. There are a few historically LGBTQI plus health centers that in the last 5 to 10 years have been modeling an institute that they are working on setting up on the Fenway Institute. We were the first to do that as a federally qualified health center. There are some other health centers that aren't historically LGBTQI plus that have an institute or at least a research and education operation. One example is Community Health Center Inc.
Alex Keuroghlian:In Connecticut, for example. So it's a model we're seeing more and more, which is great.
Rhea Boyd:And tell us why that model might be especially important when you're trying to provide, as you said, high quality care for LGBTQIA plus populations.
Alex Keuroghlian:Well, historically, research, education, training, policy work are in the realm of academic medical centers and traditionally academic institutions. And there's been a challenge doing that work in a community engaged and community led way. Often, those traditional academic environments have not been safe, welcoming, inclusive, and affirming of marginalized, minoritized populations, including LGBTQI plus people. So part of the genius historically of Fenway has been to do that work rigorously with great impact in a way that is entirely led by LGBTQI plus communities and organization by and for us within the spirit of the old political proclamation, nothing about us without us. And that has continued to this day.
Alex Keuroghlian:It hasn't been perfect necessarily at every step. There's been, you know, a reckoning to be more and more inclusive of all sexually and gender diverse people and to approach health equity and health justice in a more intersectional way. But I think that has been an important advantage in terms of the work being relevant to the communities that we're dedicated to serving. And it's also a federally qualified health center that's provided care for these populations in a really dedicated innovative way. So there's amazing cross synergy between the clinical services offered and the research, education, training, advocacy policy work that occurs there.
Rhea Boyd:I mean, it sounds like a really powerful model. I saw that in February 2024, you wrote an article in the American Journal of Public Health specifically about cisgender privilege in public health research. Can you tell us a little bit about what you mean in the article by cisgender privilege in research? And is this a part of why institutes like this are so necessary for FQHCs that have that special mission to serve LGBTQIA plus populations?
Alex Keuroghlian:I think it is. Yeah. That particular article was an editorial commissioned by the American Journal of Public Health, so they reached out to me to write that about a research paper that had come out about the use of cisgender concepts and language in public health research in general. And when they ask you an academic journal to write an editorial in this way, you're given pretty free reign to focus on whatever aspect is of most interest to you or that you think is most salient to distill from the broader research study that the journal is publishing. And I'd been thinking about this idea of cisgender privilege generally for a while and hadn't seen anything written about it in the context of how we approach public health research and policy.
Alex Keuroghlian:So this was an opportunity to have privilege be the starting point and organizing principle of that piece, even though the word privilege per se I don't think appeared in the original article, the study that I was writing that editorial about. And I think it's helpful to think broadly about privilege in health care, in medicine, in public health, and the ways in which that ties into certain populations effectively being marginalized or minoritized in terms of receiving services or having public health policy be designed to help people who have historically been left outside of health benefits and who haven't enjoyed the same standard of health as the general population in order to address inequities.
Rhea Boyd:Yes. I see that part of what you talked about is the importance of the completeness of patient gender identity data in the medical record. Can you say a little bit more about that and how that relates to cisgender privilege?
Alex Keuroghlian:Sure. That's something Fenway's been really focused on and at the forefront of for over 2 decades. And certainly once I arrived there, it was a primary focus of ours as well. Fenway, by necessity, internally developed a lot of the pioneering approaches for patient gender identity and sexual orientation data collection because we had to, and it was so vital for health service delivery. It's this idea that we have to know the gender identity and sexual orientation of all of our patients, not just those who are sexually and gender diverse, but cisgender straight patients as well so that we can provide patient centered culturally responsive care for LGBTQI plus people to enjoy the same standard of health as the general population.
Alex Keuroghlian:And Fenway advocated for many years for federal agencies to, for example, require patient gender identity and sex orientation data reporting and eventually achieved this through the Health Resources and Services Administration's Bureau of Primary Healthcare that funds and supports all approximately 1400 federally qualified health centers that exist across the country in every US state. So since 2016, all federally qualified health centers have been required to report patient gender identity and sexual orientation within the National Uniform Data System to the Bureau of Primary Health Care. And in the 1st year of that policy, 2016, and we published the research paper on this in the American Journal of Public Health, completeness of patient gender identity and sex orientation data reported to the federal government was less than 30%. And then last year in 2023, we published on completeness of patient gender identity and sexual orientation data reporting to in the uniform data system 6 years later in 2021, and that completeness had increased to more than 70%. So this goes to show if you build it, they will come.
Alex Keuroghlian:Right? Like, if we require reporting of this information by health care organizations and we provide the necessary training, technical assistance, capacity building for health centers to do that, and our National LGBTQI plus Health Education Center at the Fenway Institute that I direct has been funded by and tasked with, doing this for the Bureau of Primary Health Care, then we'll see completeness of reporting of this SOGI data increase dramatically in just a few years. So it's really heartening as a proof of concept to see that in 6 years, completeness of this data went from less than 30% to more than 70%. We're likely to see that continue in the years ahead.
Rhea Boyd:And can you talk a little bit about why this data completeness matters? I feel like sometimes when we talk about data, it can be it can feel like an abstraction from our actual humanity. It can feel like people become a number or a symbol or a letter in your chart that signifies what your gender identity is. But it's more than that, right? Like, if we don't know, we for example, we had the same challenge around racial demographic data that had a lot of advocacy during the last, I'd say, 5 years over the pandemic, but certainly spurred by the movement for Black Lives for us to talk about the ways that racism impacts health.
Rhea Boyd:And for us to fully understand that, we have to understand the racial demographic data of patients so that we can compare outcomes and health care utilization by racial group. And so it's not just kind of a checkbox thing. Right? It it's more meaningful, and it's a way that resources get distributed. It's a way that research agendas get set.
Rhea Boyd:So tell us more about why data completeness kinda matters.
Alex Keuroghlian:Yeah. Absolutely. And I love the way you frame that. And we like to say, if you're not counted, you don't count. If we don't know who our LGBTQI plus patients are, then we can't be responsive to their health needs.
Alex Keuroghlian:And I love the paradox you set up there where it can seem like an abstraction and, like, people are just a data point, but it's the exact opposite. It's in order to humanize people and make sure that we see people for their totality of who they are and that we can care for all aspects of the person. And it becomes really important to your point in terms of public health and policy, like during the COVID 19 pandemic. It was critical to characterize and quantify disparities in terms of COVID infection rates and testing rates and who had access to vaccines. And we can't address those disparities if we don't have the data.
Alex Keuroghlian:So it really comes from caring about the individual and the community that we do this. When it comes to all of this demographic information, including race, ethnicity, sexual orientation, gender identity, having those conversations with each individual patient in a sensitive, effective way also communicates to the patient that we see them, we care about them, we care about all of their experience, that we are mindful of and sensitive to and wanting to address experiences of racism, homophobia, transphobia that they may experience. So we focus to an extent on the patient data collection, but that really requires and prompts all kinds of transformation within health care systems. It requires training all staff in foundational concepts and terminology. In the relationship of stigma and discrimination to health inequities, which we often in the context of LGBTQI plus populations, understand within a minority stress and resilience framework, for example.
Alex Keuroghlian:It requires addressing implicit bias among staff. Understanding that our implicit bias adversely impacts our communication, our rapport, our decision making with patients, patient's perception of the quality of care that they're receiving, their adherence to treatment recommendations, their attendance at follow-up visits, and their health outcomes. It requires us to think about and train all staff in sensitive and effective communication. For example, not making assumptions and asking every patient about their correct name and pronouns, how to apologize when you make a mistake and recover. Right?
Alex Keuroghlian:If you misgender a patient to say, I'm so sorry. I didn't mean to be disrespectful, correcting yourself, saying thank you for letting me know. I'll do better next time. And how to build a safe, welcoming, inclusive, and affirming care environment in which patients will feel comfortable disclosing their identities, right, and sharing this information. It prompts broader conversations with clinicians about one's loved ones, one's partner, one's desire for gender affirmation, for example, in particular, gender affirming medical or surgical interventions.
Alex Keuroghlian:And it also allows us to engage, as you refer to, in population health management to say, well, what are the health outcomes with regard to quality measures for our transfeminine patients, for example, compared to our cisgender women within the practice so that we can engage in continuous quality improvement. And it also brings in other really important and cool innovations like anatomical inventories in the electronic health record, right? To track body modifications and retained organs so that, for example, preventative cancer screening isn't just based on, say, a binary sex that's listed in a chart in a crude way, but really based on what retained organs and body parts the patient has. This idea of if you have it, check it. Right?
Alex Keuroghlian:If someone has a prostate, they are gonna need care whether this is a cisgender man or a transgender woman. If someone has a cervix, they're going to need cervical pap tests, whether this is a trans masculine person or a cisgender woman, for example. So it's really precision medicine in a true sense and leads to dramatic improvements in the quality of care, in patients' experience, and in health outcomes.
Rhea Boyd:Wow. Thank you for that. I wanna come back to that in a minute because you raised a lot there. But first, why the focus on LGBTQIA plus populations? Is there a story there or something that really prompted this interest and passion for you?
Alex Keuroghlian:Yeah. When I was in medical school, I happened to do an HIV psychiatry elective. This was in California in the Bay Area. I worked with an HIV specialized psychiatrist and was blown away by the fact that he had an entire career focused on primarily serving queer and trans people of color. And I was like, wow, you can do this as your primary focus and you can get paid for it and get taken seriously at an academic medical center for doing that work.
Alex Keuroghlian:It blew my mind. I just didn't realize that that was a possibility. I ended up doing the first research project that I led primarily on my own, which was focused on understanding the relationship of antiretroviral medication adherence to post traumatic stress disorder among people living with HIV. And I worked with community HIV clinics across the San Francisco Bay area and loved every minute of it. Then I came to Boston for psychiatry residency at Mass General Hospital and McLean Hospital and initially became very interested, which may seem surprising, in personality disorders because I think I was always interested in stigma within medicine and healthcare and why certain populations were ones that even physicians didn't particularly want to work with.
Alex Keuroghlian:And it seemed like most physicians didn't want to work with the patients who had psychiatric needs, but then the psychiatrist didn't want to work with patients who had personality disorders. So I was like, What is going on there that nobody wants to work with these people? Why are they eliciting such a strong, aversive response from people who are supposed to be here to take care of them and who have dedicated their lives to helping people who have these needs. So I went off the deep end doing a lot of research and extra clinical training focused on personality disorders. Then in my 2nd year of residency, I did a public and community psychiatry rotation within our Department of Mental Health in Massachusetts.
Alex Keuroghlian:I had honestly never thought about health systems and policy and the ways in which that could impact health. I had an amazing mentor who was the director of the Division of Public and Community Psychiatry at the time, which is now my position, and she became a mentor of mine over the decade that followed and still is. It occurred to me that this idea of health equity and social justice, which was never really how I thought about things, could be connected to this passion I had for LGBTQI plus health in general. And being an LGBTQI plus person myself, it was beyond just an academic or professional or intellectual interest. It was very personal.
Alex Keuroghlian:There wasn't a clear way for me to get from being at this Harvard teaching hospital to being plugged into LGBTQI plus communities. So she as my mentor really helped bridge this relationship between Mass General Hospital Psychiatry and Fenway Health, which was across town, and our psychiatry residents had never really spent much time over there. I ended up doing a craft fellowship in community health leadership where I was able to be a fellow at Mass General Hospital that spend much of my time at Fenway Health. And it felt like a breath of fresh air to be at a health center by and for LGBTQ plus people. I was seeing patients there.
Alex Keuroghlian:I was working at the institute doing research. I was supported through the fellowship to do a master's in public health at the Harvard School of Public Health that I know both you and I attended. And that's really how it took off. And I've been able fortunately to have this academic community career that bridges the 2 where there really wasn't a clear path to doing that before. But since then, I've been delighted to support earlier career psychiatrists than me in our department to work both at MGH, an academic medical center and at community health centers in town, for example, at Boston Healthcare For the Homeless.
Rhea Boyd:That's so incredible. You had so many mentors who kind of brought you down this path. I'm also really moved by you describing essentially nothing about us without us, that, you know, you are both serving a population that you're passionate about and you care about, but you're also a member of that population too. Do you think that's more common in kind of the care that you provide or even in my own work as a black woman who cares deeply about black populations and health inequities that fall along racial lines? Like, do you think there's something something about that that's powerful that you've experienced, or is it just a coincidence?
Alex Keuroghlian:Yeah. I think it's transformative and I think it's critical. And there's a saying, if you're not at the table, you're on the table, right? If we're not making decisions for our communities, then other people are going to make decisions for us. And there's a long sordid history of horrible things that have happened in healthcare and in health policy when marginalized, minoritized communities weren't at the table.
Alex Keuroghlian:There's more and more of an expectation, I think, within healthcare and academic medicine and public health to have representation at all levels and in every ways and to involve minoritized communities in the planning, design, implementation, and evaluation of health programs and health policies. I think there's an improvement on that front. We're seeing more and more representation and an understanding that it's not okay to have a room of people make decisions about health for a minoritized population without that group being represented. We're seeing this in how research studies are conducted increasingly. For example, the need certainly for community advisory boards that are representative, but also for the staff conducting a study and for the authorship of any period publication, for example, to include representation of the people and communities that the study is about, right?
Alex Keuroghlian:I think that's improving. I think we still have a way to go in terms of building a workforce that's fully representative in those ways and safeguards to ensure that that happens. There are still examples, unfortunately, where that's not the case and that have resulted in really destructive policies, I'm just going to you know, I'm not above shaming people who cause a lot of harm. I'll give an example, which is the CAS review in the UK a few months ago this year around gender affirming medical care for youth that was funded by the National Health Service and that really excluded trans and gender diverse populations from robustly participating in that review, in the report that was generated, and in the policies that resulted. And the only way restrictive, oppressive health policies like that can persist and be enacted is by cutting the communities adversely impacted out of the process, out of the equation and moving forward without them.
Alex Keuroghlian:So I would love to say that we're in a place where that doesn't happen anymore, but we're unfortunately still seeing that it does happen. We need to be vigilant about it. We need to name it when it occurs and we need to demand inclusion at every step in decision making.
Rhea Boyd:Absolutely. I've also found it to be an incredible, meaningful part of the work to be a part of the population that you're serving. But I've also found, honestly, it can take a toll. It's hard to study inequities when you're on the other side of that and when they're not well described and when interventions are few and, you're a part of it's important to be a part of this shift, I think, in science and in the medical canon and recognizing these issues as legitimate, as important, as deserving of funding and priority. And yet it's tough to be at the beginning of that as a person who also experiences it for yourself or for your family.
Rhea Boyd:Have you found in your own experience doing this work as a member of the community that it also comes with a price or takes a toll? And if so, how do you address that?
Alex Keuroghlian:Yeah. Great question. I mean, I'd love to speak to both parts of what you said. The first in terms of how rewarding and meaningful it is to be of the communities we serve, we just published a research paper this month in the Annals of Family Medicine with 2 Harvard Medical students who are mentees of mine who are fabulous on healthcare discrimination and avoidance related to patient clinician identity discordance. They are the ways in which there is more reported healthcare avoidance and discrimination among sexually and gender diverse people who have discordant identities with their clinicians than there is among cisgender straight people, and it really speaks to the value of diversification and representation within the clinical workforce.
Alex Keuroghlian:So I thought it I give all credit to the students. I kinda got out of the way and let them do this amazing study, but it's something very profound that they were able to demonstrate through that work. In terms of the toll it takes on those of us who are of the communities we serve, it absolutely can. You have to kind of buckle up and fortify yourself if you wanna do that. You have to take care of yourself.
Alex Keuroghlian:You I think you have to do it in community, not take it on in an individualistic way. And you want to have people that you can process the experience with who are going to have your back. And there is a real strength and resilience that comes from being in community doing this work. It can have a toll in a variety of ways. I think anyone who speaks out against injustice and against powerful forces that are oppressive, even in a very data driven, measured, intentional way, is likely to encounter resistance at some point or a backlash or even disappointment because things don't improve as quickly as they need to.
Alex Keuroghlian:And I think you want to take the wins where you get them and see where there are windows of opportunity to move things forward and improve them. It's very incremental and sometimes can feel like 2 steps forward, 1 step back. It's really over a long period of time and taking a long view that eventually you can look back and say, wow, we've really seen a lot of improvement here. You don't necessarily see it in the moment. It's not about instant gratification.
Alex Keuroghlian:And it's also not something that everyone in our communities is obligated to do. It's not for everybody. I know a lot of clinicians, physicians from various marginalized, minoritized groups who want to practice, be fabulous doctors or researchers, where the work they do doesn't explicitly have anything to do with their identities or the communities that they're part of, and that's fine. That's totally, you know, valid noble work. It's helpful if you are gonna do healthcare work that is inherently political, not because you make it political, but because it's been politicized by society, then you wanna go into it with your eyes wide open.
Rhea Boyd:I agree with that completely. I wanted to go back to that paper that you mentioned, because this is kinda hot off the presses. So it was published in the July, August 2024 issue of Annals of Family Medicine. And you noted that you and your colleagues found that sexual and gender minority adult patients reported experiencing more discrimination, that discrimination was more prevalent in the health care experiences of sexual and gender minority adult patients when they had a discordant provider, meaning a provider who was not also a sexual or gender minority person. Did you guys speak at all about what you think the root of that is?
Rhea Boyd:Is it a lack of education? I mean, I started off today's pod by talking about how when I went through medical school, which admittedly now is over 15 years ago, it was a while ago. But when I went to medical school, this was not even a topic. It wasn't even an elective. It wasn't even something you could ask or learn or kind of read about.
Rhea Boyd:Like, it was we were still just beginning to talk about, what are now kind of called social determinants of health or drivers of health are the ways that, structures in society and experiences and historical policies have shaped health care outcomes. I mean, we were just at the beginning of having that conversation when I was in medical school. So do you think that this is related to a lack of education and that the solution is that we need to train and teach everybody about this? Or is it something, honestly, deeper and darker? Do you think there is you know, similarly to how our nation has a very clear and concerning history of antiblack racism, do you think there is a thread of discrimination against LGBTQI A plus populations that is just a part of the fabric of our country and maybe even medicine as an industry that also has to be addressed in a way that's a little different than just education.
Alex Keuroghlian:Yeah. I think there were a lot of really profound points you raised there. To start with the last one, there's often this notion, I think in the general public, that physicians and the medical profession benefit from that this is an inherently noble, idealistic group of people practicing medicine or doing clinical work and that people, you know, deserve the benefit of the doubt and trust from communities. Now we know that that's not the case often in communities that have been harmed and experienced a lot of medical violence and medical trauma. Certainly, black and African American communities have experienced this throughout all of American history.
Alex Keuroghlian:And I do think that there is a component of this, which is that the structural discrimination that exists in society and our country at large, including anti Black racism, homophobia, transphobia, is not something that the medical profession is above or immune to. Right? Like it permeates all aspects of the healthcare industry, of the medical profession the way it permeates all industries and all aspects of US society, right? So it's everywhere. That's for sure.
Alex Keuroghlian:And to an extent, this isn't gonna be fully addressed within health care or medicine until, you know, it's fully addressed, if ever more broadly within society. So that's very, very true. Within healthcare and medical training specifically, I think it is the case that this isn't part of the standard curriculum. You and I, it sounds like, were finished training right around the same time. And this was not at all part of or barely part of my medical training in the San Francisco Bay area, which is as inclusive and affirming supposedly of LGBTQI plus people as any part of the country or any place in the world, it was barely there, right?
Alex Keuroghlian:And even social determinants more broadly, what you said totally resonates with me. That was not really a term or a conversation. It was more like toward the end of residency that I even started hearing that term. And now it's like the only you know, you hear about it everywhere, all the time from everyone, but it happened very quickly. So I think it does need to be part of the standard curriculum for medical students, nursing students, social workers, psychologists, you name it.
Alex Keuroghlian:There was a study done over a decade ago that showed that across the US and Canada, there was a combined average of 5 hours of focus on, LGBT was a term that was used, care back then. Recently, a follow-up was done about this. I think it was like on average, 12 hours total across all of medical training, so an improvement, but so far from where it needs to be. What we've focused on at Harvard Medical School since 2018 as part of our curricular initiative has been to integrate this into the core longitudinal curriculum for preclinical courses, clinical clerkships and rotations, and advanced courses. Doing a landscape assessment, where is this taught?
Alex Keuroghlian:Where is it not integrated? Where is it being taught but not correctly or not effectively, where opportunities to integrate this, and then working with course leadership to incorporate it into training. And also realizing that we need to train faculty to know how to incorporate this into what they're already teaching because not all faculty are LGBTQI plus health experts. So we developed a modular, multi component, multimedia curriculum that's available for free through our National LGBT Chiapas Health Education Center now for faculty to learn foundational concepts and terminology, how stigmas related to health inequities, implicit bias and power dynamics, sensitive and effective communication, how to research LGBT calculus health in your area that you teach so you can incorporate it, how to evaluate your teaching, how to disseminate your findings. And within all that is also how to develop clinical case scenarios that are representative of the population without stereotyping them or causing a fat.
Alex Keuroghlian:So we incorporated all that. And the last thing I'll say is that education is really important, but we also need to have representation of these communities in our medical and health care workforce. One thing we like to say is you don't have to be LGBTQI plus to do this well. And also just because you're LGBTQI plus, it doesn't mean you know how to do this. Right?
Alex Keuroghlian:There are clinical skills that people have to learn about how to care for this population that you're not just born with because you happen to have those identities. Right? So both things are true and important.
Rhea Boyd:Absolutely. And that can sometimes honestly become an issue when people are sometimes, honestly, elevated to positions of leadership or asked to take on important initiatives just because you have that identity without also having the expertise. Of course, there are are wonderful people like you who have both, which is so critical. But it's also something we have to guard again so that people don't just feel like the identity is enough, the shared lived experience is enough. It also is an area that, as your career demonstrates, takes, you know, concentrated expertise investment of your time so that we can get it right.
Alex Keuroghlian:Yeah. And I think it does a disservice to everyone when that happens. Right? I mean, people get tokenized in a way that's not fair and can be uncomfortable, and we've all been there in terms of being tokenized. And there's also what people sometimes refer to as the minority tax, this idea that you're expected to do all the work as the one token person of a particular group within your practice, within your school, within your institution to, you know, meet all the health needs for your minoritized group.
Alex Keuroghlian:And people are often not compensated additionally for having to do that work within the organization, financially and otherwise. It's often not recognized academically in terms of promotion, right? So because you're doing the health equity stuff for your population, you, you know, may be appreciated by your colleagues, but it doesn't count materially towards your promotion to assistant professor, associate professor, or full professor, for example. So we need to think about what's rewarded within our institutions. And, you know, people can take on that work if they want to, but they shouldn't have to just because they share those identities.
Alex Keuroghlian:And the other way in which it does people disservice is that there's this assumption that LGBTQI plus health or black health isn't, you know, a rigorous medical discipline like everything else. Right? Like, oh, you can just, like, walk in because you happen to be part of that population. No. Like, this is a real field of medicine.
Alex Keuroghlian:This is a real discipline, and we need to take it as seriously as as all the other ones.
Rhea Boyd:Thank you so much for saying all that because it's really critical, and it is also an issue that becomes a challenge in the work. I wanna kinda zoom out from that challenge to think more broadly because another one of the consequences of the structural discrimination that exists in society at large that we've talked about and the lack of education around the specific needs and care for LGBTQIA plus people and populations is that it also takes a toll on those folks as humans. Right? And that happens as you navigate the world. It happens as you, encounter the health care system, whether you encounter that system as a patient or a worker, as you just shared.
Rhea Boyd:So I'm hoping with your kind of psychiatrist hat on, can you tell us more about the mental health concerns and challenges facing the LGBTQIA plus population as patients and perhaps also as, like, workers in health care?
Alex Keuroghlian:Yeah. Well, I find it helpful to think about the mental health impact within a sexual and gender minority stress model. And the idea here is that LGBTQI plus people chronically, developmentally from early childhood through adolescence and across adulthood experience everyday discrimination, victimization, microaggressions, frank violence, unfortunately, at a much higher prevalence than the general population. And there's a real intersectional component to this where, for example, African American transgender women experience a much higher incidence of hate crimes than even white transgender women, for example. So we have to think about this in an intersectional context.
Alex Keuroghlian:All of this we think of as external stigma related stress. And that can take a toll over time for many people, contribute to changes in, interpersonal relationships, emotional regulation, having certain beliefs that are totally understandable and protective when you face that kind of minority stress, but that can perpetuate distress over time, like believing it's never going to get better. Nobody can be trusted. No one will ever love me, for example. And all that external stigma related stress can contribute to internal stigma related stress, internalized homophobia, internalized transphobia, believing all the negative things that society has to say about your sexual orientation, your gender identity, your sex development, expecting rejection because you're so accustomed to it, and identity concealment, for example, to prevent mistreatment or abuse.
Alex Keuroghlian:And all of this external and internal stigma related stress can take a toll, can contribute to what we see in research and in our clinical practices, unfortunately, which is a much higher prevalence of depressive disorders, anxiety disorders, post traumatic stress disorder, in some cases, substance use disorders as a way to cope with all that stress, decreased self care, decreased engagement in health care, including mental health care and primary medical care, for example, in the context of a lot of well founded medical mistrust due to, you know, medical violence and mistreatment and down the road, a much higher prevalence of various physical health problems as well. Now it's important to think about this not just as a sexual and gender minority stress framework, but a sexual and gender minority stress and resilience framework. The idea that minority stress can present as a crisis, it's also an opportunity to promote resilience and cultivate adaptive coping skills. That being said, resilience isn't a solution for structural discrimination that requires protective policies and nondiscrimination laws, and it's important to be really clear about that. So that's how we make sense of the higher prevalence of mental health problems in the population in the context of stigma and discrimination.
Alex Keuroghlian:Now it's important how we present that because that can get weaponized by anti LGBTQI plus interests, right, who may say, you know, look at these people with all these mental health problems without acknowledging and naming that those mental health problems are the result of oppression that this population has experienced and continues to. So that's how we might think about this this from a population health standpoint. In terms of health care professionals, it's challenging and can take a toll to bear witness to the suffering and anguish of patients and communities in general and certainly patients and communities who share your identities and lived experience, right, and there can be vicarious traumatization that happens in that context, I have experienced that as a bit of a double edged sword because it's also really energizing and a source of profound purpose and focus to work on the health priorities of my communities, and you end up being able to bring your own insights from lived experience to the work, both clinically and in terms of research and public health. It's an interesting set of considerations around identity disclosure. Right?
Alex Keuroghlian:In psychiatry, traditionally, we're trained to not disclose anything about ourselves to our patients. You're a blank slate, right? Patients don't know anything about you and they project all kinds of things onto you and you maybe explore during a session what they're thinking about you, but you're very judicious about disclosure, which I agree with. Anything you disclose should be very intentional because it's therapeutically beneficial for the patient, not because you're working through your own stuff and are doing it for your own purposes. That being said, you know, I would then visit supervisors of mine when I was in training or attendings and they had pictures of their family and their spouse and their straight marriage and their office.
Alex Keuroghlian:I was like, well, there's a privilege here, right, in terms of assumptions or disclosure of identities that are ones that hold more power. And we're much more cautious when we have these not readily apparent minoritized identities and experiences. So working at Fenway Health was interesting because there's almost an assumption among the patients that people who work there are of the community. And I get asked almost never about my own identities and experience. I'm sure that patients are making assumptions and projecting all kinds of things onto me, but I am less anxious about potentially having to disclose because I don't see the harm in it certainly.
Alex Keuroghlian:But again, I would only do it in the context of intentional decision making that this is therapeutically somehow beneficial for the patient.
Rhea Boyd:Wonderful. Over our conversation today, you've identified a number of best practices in LGBTQIA plus health care. We've talked about data completeness regarding including patient gender identity in the medical record. We've talked about the importance of inquiring about and correctly using patient pronouns. You discussed the value of developing restorative practices for misgendering events and how critical it is to create safe environments within health care for patients to disclose their identities and their care preferences.
Rhea Boyd:You even mentioned one that I was actually wasn't at the forefront of my mind, but is so important around population health management tools to track body modifications and retained organs for cancer screening, for example. So we've gone over a number of best practices, but this is also health affairs. So share with us some best policies for LGBTQIA plus care. You mentioned maybe one around making some of these best practices in health care a part of the standard medical school curriculum. Are there other policy shifts that you see as critical to providing high quality care?
Alex Keuroghlian:Sure. I think it's really important to have explicit non discrimination protections related to sexual orientation, gender identity and gender expression. In the Department of Health and Human Services, there's an office of civil rights that has protected these and advanced these sorts of policies to varying degrees depending on the administration and decisions being made there. Nondiscrimination policies that aren't health specific also have an impact. We published a paper a couple years back in the American Journal of Public Health again on the relationship of municipal nondiscrimination laws to completeness of patient gender identity and sexual orientation data collection across 49 US states and 506 municipalities.
Alex Keuroghlian:We found that more strongly enforced municipal sexual orientation nondiscrimination laws were associated with more complete patient sexual orientation data reporting within health centers in those jurisdictions, and more strongly enforced gender identity nondiscrimination laws in municipalities were associated with more complete patient gender identity data reporting by health centers within those jurisdictions. So it was the first people to establish that kind of relationship between structural stigma and patient demographic data collection of any kind. So just to say that the context matters, the ways in which we're protecting LGBTQI plus communities in civil society have a direct impact on health practices that we know are important for these communities?
Rhea Boyd:I mean, this relationship is really fascinating between nondiscrimination policies and protections and the actual adherence in areas that have those protections and policies to care best practices. What a great note to end on. Today, we've been talking to doctor Alex Keuroghlian, a psychiatrist, associate professor of psychiatry at Harvard Medical School, and the director of the Division of Education and Training at the Fenway Institute, which is an institute based at Fenway Health. Alex has been talking to us about the important ways we can prioritize LGBTQIA plus health, health care rights and policies for patients, for our health care workforce, and for the population at large. I hope everyone enjoyed this conversation as much as I did.
Rhea Boyd:Alex, thank you so much for joining us today.
Alex Keuroghlian:Thank you, Ria. Such a pleasure.
Rhea Boyd:This is Research and Justice For All from Health Affairs, season 2. If you like what you heard today or you're interested in our future upcoming episodes, be sure to click subscribe or send it to a friend.