LGBTQ Health Data Privacy

The Data Trail

Gathering a patient’s health history is a key first step in the delivery of quality care, but LGBTQ patients may worry about the potential costs of sharing what they’ve long held close

From a medical perspective, it seems like a no-brainer.

“Someone’s sexual orientation and gender identity are a core part of who they are,” says Mark Schuster, MD ’88, founding dean and CEO of the Kaiser Permanente Bernard J. Tyson School of Medicine. “Clinicians should care for the whole patient and should make an effort to understand each patient in the context of their own life.” But for some LGBTQ patients, disclosing information about such matters to health professionals is considerably less straightforward.

Schuster understands both sides of this complicated issue better than most physicians. In remarks he delivered in 2010 at what was then Children’s Hospital Boston, and published in 2012 in Academic Pediatrics, Schuster described speaking at his bar mitzvah a few decades earlier, recalling that he had thought to himself, “I am a homosexual standing in front of all these people.” He realized that speaking the words out loud would have been unacceptable in his home, his school, or any place he knew, adding that he “could not have conceived” of telling his doctor. “The idea that I would someday be able to stand in an auditorium, stand anywhere” as an openly gay man, “was not something I could imagine.”

Society in general has come a long way since then, and medicine along with it. But judging from recent research, much more remains to be done before everyone feels welcome in doctors’ offices. A 2015 study in the American Journal of Public Health found that LGBT study participants aged 18 to 59 had nondisclosure rates of almost 40 percent among bisexual men, with gay men and lesbians choosing not to share their sexual orientation with their physician at rates of 10 percent and nearly 13 percent, respectively.

This reticence can have serious implications for care. Yet the effort and risk required to discuss what may be a very personal matter can be daunting given the history of prejudicial treatment toward sexual and gender minorities.

“Every time you see a new doctor or nurse,” says Schuster, “you wonder what the reaction will be and worry about the quality of your care. Will you be discriminated against when you’re sick or sitting in a clinical gown feeling very exposed?”

15 percent of trans respondents reported being asked invasive questions unrelated to their visit.

Transgender patients are even more likely to protect their privacy. According to a Trevor Project study released in 2019, only 29 percent of 13- to 24-year-old trans youth or youths with nonbinary bodies disclosed their gender identity to doctors or other health care professionals. A 2015 survey published by the National Center for Transgender Equality helps explain why: 15 percent of trans respondents reported being asked invasive questions unrelated to their visit, 6 percent said they were verbally harassed in a health care setting, 3 percent were refused care, and 3 percent encountered a health care provider who was “physically rough or abusive when treating them” or who physically assaulted them. Sexual assault, too, was reported by 1 percent of respondents.

“There’s no reason not to disclose that you are transgender to someone who’s going to treat you respectfully,” says Jamison Green, a trans author, educator, and activist. “But the problem is we have too much collective experience, and we share the stories in private of being harassed, laughed at, and in some cases, physically struck by people in doctors’ offices. It makes people anxious to know they might be treated insensitively.”

portrait of Mark Schuster
Mark Schuster

Research has shown LGBTQ people face significant health disparities, and anecdotal evidence abounds that trans people in particular often fail to get the care they need, because of either their own fears or the negligence of health professionals.

“I can tell you hundreds of stories where folks were mistreated, made fun of, or made to feel disgusting or freakish by people who were supposed to help them,” says lawyer M. Dru Levasseur, deputy program officer at the National LGBT Bar Association.

Careful decisions

The consequences of such closely guarded privacy can be minor—or disastrous.

“It may not always be obvious that being transgender is important to one’s care,” says Schuster, “but it can be relevant to every specialty.” He cites the example of hematocrit levels, which measure the ratio of red blood cells to total blood volume and can be affected by hormone levels. And while parts of the body like the feet and heart may seem to operate without regard to sexual orientation and gender identity (SOGI) status, a podiatrist who knows a patient’s birth sex or hormone status may be more likely to correctly diagnose osteoporosis or a cardiologist may interpret a trans person’s stress test or EKG differently than they would a cisgendered person’s. Scientists are just beginning to learn about so many metabolic subtleties in a variety of fields, and SOGI status can add another layer of challenge to getting it right.

Often more immediate and more pressing concerns include the health risks of hormone therapy, including stroke, heart attack, and liver damage in transgender individuals; higher rates of substance use and attempted suicide in LGBTQ adults; and increased homelessness and suicide attempts in LGBTQ youth. The list of health-related differences goes on, leaving some patients feeling like they’re caught between two impossible choices: telling and risking embarrassment or worse, or not telling and getting less-than-optimal treatment.

Of course, the two are not mutually exclusive, since disclosure doesn’t always guarantee improved care. Levasseur mentions the case of Robert Eads, a Georgia man who began transitioning in his forties and was refused treatment by more than a dozen doctors after receiving a diagnosis of ovarian cancer in 1996. He died three years later, at age 53.

For many trans people, the pain of Eads’ story, told in the 2001 documentary Southern Comfort, and stories like it, lingers, in part because even though acceptance has grown in the past decade, in many ways U.S. law has not caught up.

The 2001 documentary Southern Comfort focuses on Robert Eads in the year before his death from ovarian cancer.  According to the National LGBT Cancer Network,
1 in 72 people
who are born with ovaries will be diagnosed with this cancer during their lifetime. This includes transgender men who retain ovarian tissue.

“There’s fear around the potential ways health information could be used,” says Sari Reisner, an assistant professor at the Harvard T.H. Chan School of Public Health and a research scientist at The Fenway Institute in Boston, where he leads a national and global portfolio of transgender health research. “If information gets into the wrong hands, it could lead to devastating consequences, both on a personal level and for the LGBTQ community.”

Health records have different layers of privacy protection. “There are things young people can keep private, for example,” says Cecil Webster Jr., an HMS lecturer on psychiatry, part-time, at McLean Hospital and a Boston psychiatrist in private practice. Webster completed his fellowship in child and adolescent psychiatry at Cambridge Health Alliance in 2013. “However, if a child worries that parents will have access to medical records that reveal something that could cause discomfort or even endanger the child’s life, they may choose not to reveal that to physicians.”

There are other reasons many patients feel, with some justification, that it’s reasonable to be cautious.

For now, federal antidiscrimination laws protect health insurance under the Affordable Care Act, but that could change as the current administration seeks to allow providers to refuse coverage or treatment to individuals whose needs may somehow conflict with the providers’ self-described religious beliefs. In March of last year, the administration also reinstated the ban on openly transgender military recruits, just two years after it had been lifted. Litigation regarding the ban is ongoing. At issue in the case banning transgender military recruits and several others is whether use of the word “sex” in Title VII of the Civil Rights Act of 1964, which prohibits employment discrimination based on “race, color, religion, sex, or national origin,” includes SOGI information. Two major cases on this question were argued before the U.S. Supreme Court in October, but decisions won’t be handed down until spring.

portrait of Cecil Webster
Cecil Webster Jr.

“Trans people in particular have unique privacy concerns around these issues,” says Reisner, “because historically in order to gain access to hormones or surgery they would have to have a psych diagnosis in their chart, which could influence other kinds of care as well as insurance. If protections are taken away, having a formal diagnosis is very different from being able to indicate they’re trans if they choose to. It may follow patients around.”

The need to know

There’s another aspect to privacy that’s not in the forefront for patients or clinicians, and that is data collection, where challenges include defining and measuring sexual orientation and gender identity, obtaining high-quality cohorts from within relatively small populations, and again, overcoming the reluctance of some patients to come out to researchers.

Scientists who work in LGBTQ health centers like The Fenway Institute often have few problems recruiting self-selected volunteers. Reisner, for example, says he has not had any trouble finding research participants from the transgender community.

“There is a hunger for more knowledge,” says the epidemiologist, who is trans himself. “The community wants to know the long-term impact of hormones, how our brains work, how stress increases cardio risk. Collecting data will increase our capacity to learn more about the population, specifically around biomarkers, to help us design interventions for improving health.”

“If a child worries that parents will have access to medical records that reveal something that could cause discomfort, they may choose not to reveal that to physicians.”

Studies using aggregated data from electronic health records and other sources, however, are lagging. Since 2016, the Bureau of Primary Health Care, part of the U.S. Health Resources and Services Administration, has required community-based HRSA Health Center Program grantees to collect and report SOGI data, and since 2018, all EHR systems certified under the federal Meaningful Use guidelines, part of the 2009 Health Information Technology for Economic and Clinical Health Act, are required to have the capacity to record that data.

But research has shown that most health care organizations have yet to implement such a system. One study by The Fenway Institute of 1,367 U.S. health centers found that SOGI data were missing for up to three-quarters of patients. This may be in part because patients are choosing not to share, but in many cases it’s simply due to outdated systems.

For studies that don’t look specifically at issues related to SOGI status, says I. Glenn Cohen, the James A. Attwood and Leslie Williams Professor of Law at Harvard Law School and an expert on bioethics, “many have inclusion/exclusion criteria that may relate to gender. One question is how to treat trans patients in particular. Is sex assigned at birth or the current sex the relevant criterion? We worry similarly about the underrepresentation of pregnant women in research studies, which happens in part because drug makers don’t want to take risks, but in both patient categories the problem is it creates therapeutic orphans.”

Broadly speaking, research relies heavily upon labels. “Asking how someone identifies in terms of sexual orientation or gender results in a preselected group with a well-defined, solid perspective on who they are and how they want to be viewed and excludes a lot of people who may not quite be there yet or haven’t decided what certain words mean for them,” says Webster. “Beyond that, there are so many different subpopulations. Queer might encompass Black lesbian cisgendered women and trans East Asian heterosexual men, but those two groups look very different. That’s part of the challenge.”

Of course, no matter the situation, it shouldn’t be up to patients to figure out when they do or don’t need to share their SOGI information. EHRs should routinely include not only options like queer, nonbinary, gender diverse, or “something else,” say experts, but perhaps also a section for extant body parts.

“Let Robert Eads’ life be a lesson,” says Levasseur. “If you have a uterus or a prostate, don’t be afraid to get it checked.”

Broadly speaking, research relies heavily upon labels.

As with seemingly everything around this matter, though, it’s not always so simple. “If you’re a trans man who needs a Pap smear, but your health record says ‘male,’” said Reisner during a panel presentation on LGBTQ health, “insurance won’t cover it. One can call and advocate for one’s patients, but it’s an example of another system where there are barriers and structural stigma.”

Reducing the stigma inevitably requires health care professionals and organizations to step up and educate themselves and their patients. “In increasing the recognition of the health needs of gender minorities,” says Reisner, “the essential piece around provider training is integrating it into the curriculum. Physicians by and large have really good intentions, but they’re also people, and if they have discomfort or lack knowledge, it may be more difficult for them to raise these issues without hesitation. We also have to let patients know they can talk to us without having anything being written in their medical record that they don’t want there.” 

An open door

Many clinicians say they make an effort to show that their offices and waiting rooms are LGBTQ friendly, for example, by having copies of Out or The Advocate among their magazines, by displaying rainbow or unicorn tchotchkes, and by hanging educational posters. Setting the right tone helps communicate to patients that the clinic is a place where they can talk about whatever’s on their mind.

“The language is new, but the condition is not new. It has always been part of the human experience.”

“I prepare myself before meeting people by doing several checks on my assumptions,” says Webster, “and I try not to assume how they identify based on how they look or sound.” He also asks his patients every six months or so if anything has changed. “It’s a wonderful way for people to feel safe enough to bring more information into the conversation,” he adds.

Even simple fixes like doctors using the right pronouns and names can have a significant effect.

“Only last year a study found that trans young people able to use their preferred names in multiple settings had fewer depressive symptoms, less suicidal ideation, and less destructive behavior,” Webster points out. “So the use of chosen names really affirmed their gender identity and lowered mental health risks.”

For the activist Green, who works closely with medical professionals on these issues, his own medical journey “has not all been a terrible experience, not at all.” He says he has “tremendous respect and admiration” for providers who are working to educate themselves.

“The language is new, but the condition is not new,” he says. “It has always been part of the human experience.”  

Elizabeth Gehrman is a Boston-based writer.

Images: Mattias Paludi (top); John Davis (Schuster); John Soares (Webster)