On the Margins

Twelve years. That’s the average number of years of life prematurely taken from LGBTQ individuals who live in communities that harbor strong prejudices against members of sexual and gender minorities. The stress of living in an environment marked by stigma and structural discrimination can result in early deaths from suicide, from an increased risk of cardiovascular disease, and from a cascade of other life-shortening health conditions.

These findings were highlighted in a 2016 statement by Eliseo J. Pérez-Stable, director of the National Institute on Minority Health and Health Disparities, announcing that the National Institutes of Health was designating “sexual and gender minorities” as a disparities population. This designation served as a notification that the NIH recognized the health inequities affecting the LGBTQ community—and the need to address them.

The problems start early in life. Across the nation, lesbian, gay, bisexual, and transgender youth have an elevated risk of bullying, suicide, and substance use disorder and lack access to culturally sensitive and clinically specific LGBT health care, according to a 2017 review of the literature published in the Cureus Journal of Medical Science.

In adulthood, lesbians have a higher risk of obesity and breast cancer, and gay men face an increased risk of prostate, testicular, anal, and colon cancer.

“There’s no biological reason that minority people should be in worse health,” says Alex Keuroghlian, an HMS assistant professor of psychiatry, part-time, at Massachusetts General Hospital, and an active participant in efforts to build LGBTQ health equity in Boston, across the United States, and around the globe.

“It’s the result of various social determinants of health, of stigma, and of medical practice not being oriented toward including sexual and gender minority people. It’s a human-made problem,” he adds.

The daunting task of addressing the problem is magnified by the limited data available for researchers to analyze, use to assess clinical outcomes, or drive clinical improvements. Until the past few years, none of the major national health surveys collected sexual orientation or gender identity data, and health systems haven’t had intake forms or electronic records that track sexual or gender minority patients.

“All people are unique and need to be treated in a person-centered, tailored way. The key for physicians is getting to know your patients as people.”

This challenge was highlighted in the landmark 2011 report from the National Academy Press, The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a foundation for better understanding: “Lesbian, gay, bisexual, and transgender individuals have unique health experiences and needs, but as a nation, we do not know exactly what these experiences and needs are.”

Now, with growing societal acceptance and legal rights for LGBTQ people, along with an increasing awareness of the health disparities that the community faces, physicians, researchers, medical educators, advocates, and members of the community itself are working together to make sure that LGBTQ people have equitable health care and the opportunity to live healthier lives.

A sense of the breadth of research occurring in the field can be found in a quick sampling of the more than three dozen papers, perspectives, and reviews authored or co-authored by Keuroghlian, who also directs the MGH Psychiatry Gender Identity Program and the education and training programs at The Fenway Institute in Boston. In just two years, he has had publications in NEJM, JAMA, and Lancet that address the damage caused by “conversion therapy,” ways to improve clinicians’ communication with LGBTQ patients, and the importance of capturing sexual orientation and gender identity data to improve health care. The work also gives a sense of how the knowledge base needs to be expanded and shared in order to provide more equitable, and more informed, health care to LGBTQ patients.

Teach, then teach some more

At HMS, Keuroghlian leads education efforts and curriculum development projects that help train health care providers and support staff at the School and at two of its affiliated hospitals: Mass General and McLean. He also is course director for the School’s fourth-year elective clerkship Care for Patients with Diverse Sexual Orientations and Gender Identities.

“When I talk with people about equity for members of the LGBTQ community, they sometimes say ‘I respect everyone, I treat everyone the same,’ ” Keuroghlian says. “What we’re trying to help them understand is that all people are unique and need to be treated in a person-centered, tailored way. The key for physicians is getting to know your patients as people.”

More inclusive intake forms and electronic health record formats would be a step in that direction, according to a paper that Keuroghlian’s team authored in 2018 and published in the Journal of the American Medical Informatics Association. These improved forms would contain space in which physicians could enter data about a person’s sexual orientation and gender identity, their pronouns, and the name they go by. That paper, a guideline of best practices for the collection of patients’ sexual and gender identity information, includes tips on finding ways to work around limitations in existing EHRs to collect this vital information.

The utility of gathering such data was further underscored in an August 2019 paper Keuroghlian’s team published in the American Journal of Public Health. In this paper, they reported the results of their analysis of sexual orientation and gender identity data collected by all U.S. health centers in 2016, the first year in which these centers were required to collect such information. Their analysis showed that many patient records were still missing sexual orientation and gender identity data, but it also suggested that, when provided adequate training and technical assistance, health-center personnel were able to collect sexual orientation and gender identity data in a culturally sensitive way.

Framing the issue

The 2011 publication from the National Academies Press highlights the importance of using an integrative framework that takes into account the entirety of a person’s experiences and identity.

Physicians, according to the report, need to understand how multiple traumas over time accumulate in individuals who face discrimination and recognize the weight that these repeated insults can have on a person’s health over a lifetime.

For researchers, the report recommends combining the minority stress model with an intersectional framework to measure and interpret how sexual orientation and gender identity co-occurs with various social determinants of health and what effect those intersecting determinants have on the health of an LGBTQ individual.

Help with the math

Although efforts are underway to improve the collection of data to identify sexual and gender minority populations, researchers and clinicians who want to improve LGBTQ health equity struggle for adequate research funding and with the challenge of finding sufficient data in claims databases or EHRs to statistically power their studies.

“Given the limitations of the data that’s been available up until now, it’s astonishing that we know anything,” says Harry Reyes Nieva, a visiting postdoctoral research fellow in medicine at HMS and Brigham and Women’s Hospital and a doctoral student in biomedical informatics at Columbia University.

Reyes Nieva worked with Li Zhou, the principal investigator at MTERMS, a research group affiliated with the Division of General Internal Medicine and Primary Care at Brigham and Women’s, HMS, and Partners Information Systems, on a pilot study aimed at analyzing EHRs throughout the Partners system. When Partners officially rolled out a new EHR in 2015, the design included fields for recording sexual orientation and gender identity. Reyes Nieva and Zhou wanted to know if primary care doctors were collecting the information.

Although the results of the study are preliminary and unpublished, Reyes Nieva and Zhou say that their initial analysis provides a promising snapshot of physician participation and the feasibility of gathering sexual and gender minority demographic data throughout complex health care organizations like Partners.

The research duo also used machine learning tools to read free text typed into patient notes by providers to capture data about LGBTQ patients who were identified in case notes as LGBTQ but for whom no sexual or gender minority demographic data had been collected. Free text data is a rich source of information and usually is not available in larger databases, which collect only the information required for billing and claims.

“Using machine learning and other computational tools to mine data from electronic health records gives us powerful new tools that we can use to improve patient health,” says Zhou. “In minority populations it can be hard to find enough subjects to generate meaningful results. But by improving the data that we collect in EHRs and finding new ways to draw information from patient records, we may find insights that can help clinicians provide better care to individual patients.”

Reyes Nieva and Zhou are still analyzing the data from the pilot study for hints on how to improve LGBTQ health equity within the Partners system. An initial insight is that sexual and gender minorities have a comparatively higher rate of ambulatory care-sensitive conditions, that is, conditions for which treatment is possible and more cost-effective when dealt with in a primary care setting but which often are left untreated until the conditions require emergency department visits and hospitalizations.

Reyes Nieva says that this possible reluctance to seek timely medical care highlights the importance of building welcoming clinical environments and training staff to deliver culturally competent care that addresses the needs of LGBTQ individuals.

“There are small things you can do to signal to LGBTQ individuals that they are in a welcoming environment,” he says. “But once you’ve indicated it’s a welcoming environment, it actually needs to be welcoming and knowledgeable.”

To build this environment requires that LGBTQ training be integrated throughout the course of medical education; that LGBTQ physicians, faculty, and researchers are more visible; and that collecting data and generating research to inform how the medical profession can increase health equity and improve care becomes a priority, Reyes Nieva says.

Question, answers

Ana Progovac, an HMS instructor in psychiatry at Cambridge Health Alliance (CHA) who researches health systems, became interested in LGBTQ health disparities through a personal connection. After hearing about the challenges a transgender friend encountered when attempting to navigate the mental health system, Progovac turned to peer-reviewed research for more insights into what her friend might be facing and how to help.

She was surprised by how little was known. There weren’t good estimates of how many transgender people were in health care systems, which makes it harder to plan how to prioritize appropriate services and coordinate care.

Working with the Health Equity Research Lab at CHA, Progovac used Medicare data to study mental health diagnoses and treatments for transgender individuals. Since these records don’t specify the gender identity of any patients, Progovac’s study design sought out diagnostic codes used to indicate gender dysphoria. The researchers used similar strategies to study care for transgender individuals in CHA’s patient records, which enabled the scientists to look for additional clues in the free text notes in those records.

Progovac published a study in 2019 in LGBT Health that examined trends in Medicare beneficiaries’ mental health care use from 2009 to 2014. Her paper reported that the proportion of patients receiving psychotropic drugs increased across the Medicare cohort, but it increased faster for gender minority patients than for other groups of older patients.

One outcome of this work, says Progovac, is recognition of the need for research and provider training in administering psychotropic medication that is safe and effective when prescribed alongside gender-affirming treatments such as hormone therapy, especially for older gender minority individuals who likely take several medications.

Progovac’s analysis of the CHA data has not been published, but preliminary findings showed that transgender individuals were being victimized by violence and attempting suicide at much higher rates than the rates recorded in the overall CHA patient population. Remarkably, when Progovac and her team shared their preliminary results with the members of the local transgender community, they thought that the estimates of suicidality and violence were significantly underestimated.

Hearing directly from members of the community was an important part of the research, Progovac says, because stories can be just as powerful as quantitative evidence.

“Different audiences need to hear different kinds of data,” says Progovac. “We use big data sets like Medicare claims because they say something about what’s going on in the whole country. I think those data sets are really important sources of data, and at the same time, I think when you’re in a health system you really need to hear the stories from your own population.”

“We need to make sure we also share the stories of how people find strength in the face of so much adversity.”

The physicians and leaders of CHA have been eager to understand what transgender patients experience when they come into the health system, says Progovac.

“When they hear these stories and see the data, people are very receptive, they want to know what they can do and what they should do next,” she adds.

Inner resources

While it is crucial to identify the challenges that sexual and gender minority communities face, Progovac notes that it is also important to understand who’s thriving and why.

“We need to make sure we also share the stories of how people find strength in the face of so much adversity,” Progovac says.

As an example, she mentions “Resilience and Multiple Stigmatized Identities: Lessons from Transgender Persons’ Reflections on Aging,” a chapter by Susan McFadden and colleagues in the 2013 book Positive Psychology. The authors analyzed the qualitative responses of 122 transgender individuals aged 61 and older who participated in an online survey about aging. More than 70 percent stated they believe they are aging successfully, attributing some of their success to a combination of self-acceptance, personal agency, and nurturing, supportive relationships.

The researchers noted that elders in the LGBTQ community who found ways to thrive in spite of lifelong discrimination and stigma might have insights that could help younger people face challenges more successfully throughout life.

This hard-won resilience can also be a tool for improving clinical care, health outcomes, and equity, Keuroghlian says. At The Fenway Institute, Keuroghlian leads the Evidence-Informed Interventions Coordinating Center for Technical Assistance, which provides national funding and support for programs aimed at improving HIV-related health disparities.

“We know lots of things that work,” he adds.

In the face of jarring statistics about the harmful effects of living with discrimination, there is good news about the healing potential of supportive communities and shared lessons in resilience. Many of the programs supported by the coordinating center rely on the power of social networks within sexual and gender minority communities, Keuroghlian says, such as training people in peer motivational interviewing techniques to improve adherence for HIV treatment. These kinds of interventions, which use social strategies based on networking and solidarity, are an important part of the future of care delivery for sexual and gender minority communities, he says.

“The LGBTQ population has overcome enormous obstacles in a few short decades,” Keuroghlian says. “If you can connect young people with that resilience, it can be profoundly empowering. In so many ways, resilience-based interventions are the future of health care for this population.”

Jake Miller is a science writer in the HMS Office of Communications and External Relations.

Images: Traci Daberko (top); John Soares