Life for many transgender individuals involves a constant struggle of being misgendered or referred to by the wrong pronoun or name. In many aspects of their lives, this ranges from annoying to personally invalidating. But when it comes to healthcare, it can be dangerous or even deadly.

“What’s happening is that with a lot of transgender patients, the provider isn’t being notified that the patient’s due for a procedure because these systems are not accurately pulling in the correct information,” Chris Grasso, associate vice president for informatics and data services at the Fenway Institute, one of the world’s largest LGBTQ-focused health centers, told Healthcare IT News. “What’s happening is when you see higher rates of cancer, lower rates of screening, a lot of it is because these systems aren’t actually incorporating things like anatomical inventory. … So [for] someone whose sex is listed as female but they actually don’t have a cervix, we’re sending them a letter that they really shouldn’t be receiving that says ‘You’re due for your pap smear.’”

Missed cancer screenings are just one example of a ways that mishandling data for transgender people puts them at risk. For instance, things like reference ranges for lab tests can also cause harm if the system pulls them for the wrong sex.

Having accurate information is also increasingly important as the EHR moves from a billing tool to a resource for population health.

“The EHR was created for a documentation tool, but now we want it to be a lot smarter. We want it to provide us with more statistics, and more data, and how do we best care for these patients,” said JoAnne Dombrowskas, MSHI, RN, manager of MGH's eCare clinical informatics team.

And, perhaps more important than any of that, when every staff person at a hospital greets a transgender person with the right name and uses the right pronouns, they’re more likely to stick around, come back and get the care that they need.

“One special thing about this community is people talk to each other,” Mitch Kellaway, a training specialist in MGH's Patient Access Services department, said. “Who’s safe? Who knew the word ‘genderqueer’ when I said it and didn’t bat an eye? And people, trans folks, nonbinary folks, genderqueer folks really notice those things. … And it can’t just be the clinicians. We [front desk and registration staff] get to them first, and they could walk out the door before they see a physician. So I tell the staff ‘you really have a part in helping these folks get better care’.”

A nationwide quest for better data

Grasso says that Fenway has been including SOGI information (sexual orientation and gender identity) in its own EHR since 1997, and started documenting it systematically about 10 years ago.

But a couple moves on the federal level have hastened a national adoption of SOGI fields in the EHR: In 2016, the US Bureau of Primary Healthcare at HRSA began requiring that all federally-qualified health centers collect and report that data. And in January 2018, thanks in part to the work of Grasso and her colleagues, having fields for SOGI data became a requirement for Meaningful Use.

“Several years ago, the Healthy People 2020 initiative and the Institute of Medicine convened national experts, reviewed the existing literature … and concluded that there really are unique health disparities experienced by gender and sexual minority people that are best addressed by making gender and sexual minority patients visible within healthcare, so we know what everyone’s SOGI is and can provide tailored patient-centered care based on that information, so that gender and sexual minority people can enjoy the same standard of health as the general population,” said Alex Keuroghlian, MD, who serves as director of the National LGBT Health Education Center at Fenway as well as the MGH Psychiatry Gender Identity Program.

Keuroghlian and Grasso agree that movement on the federal level has represented praiseworthy progress — and have even conducted research that’s starting to show that when the question is asked, LGBTQ+ individuals self-report at expected rates. But there’s a lot of work still to do.

The first step is to have distinct fields in both the clinical and registration record for sex assigned at birth, legal sex, gender identity, and sexual orientation, as well as fields for names used and pronouns. Legal names and sexes still need to live in the system because those are generally the names and sexes found on a patients’ insurance.

But Keuroghlian and Grasso believe the next step is “anatomical inventories” that will put an end to assumptions about what organs someone has based on their sex.

“A key part of this is to build in anatomical inventories that track body modifications people have had, so you could do preventative cancer screening based on the retained organs in someone’s body and not just on their chart sex,” Keuroghlian said. “That’s the future. That’s really where things need to go.”

In addition to inventories, Grasso cited a need to make sure that interoperability initiatives like FHIR keep up with these new fields. The sensitivity of SOGI information, for patients who might not be out, adds another layer of complexity.

“So if someone’s going to see a specialist outside your organization, they may feel like it’s helpful to share that information ahead of time or there may be times when they don’t want to,” she said. “So we should be able to add those controls within the system.”

“An affirming welcome”

Massachusetts General has been incorporating SOGI information into the clinical side of its EHR for a few years, but the push to get that information entered at registration is only about a year old. As of now, patients can even update some fields — gender identity, name used and sex assigned at birth — through the patient gateway.

The data infrastructure and training initiative runs parallel to the hospital’s transgender health program, a special clinic offering primary care, hormone therapy treatments and mental healthcare to trans patients. This month, the clinic opens up pediatric as well as adult care options.

“Primary care is really important,” Robbie Goldstein, MD, the medical director of the Transgender Health Program, said. “I don’t think this works with just prescribing hormones and just having a space for people to come in and get testosterone, estrogen, whatever it may be. The reality is that there are a lot of things that come up related to gender. And to have a primary care doctor and a primary care practice who can manage those issues is incredibly helpful.”

“I also think there’s a component of not making people tell their stories a million times,” added Ariel Frey Vogel, MD, an internist and pediatrician who recently joined the program. “Feeling known and heard. So when Robbie meets with a new patient, it’s with the social workers. Dallas [Ducar, who offers mental health care] is there if needed. It’s all very integrated and embedded. In any medical care model there’s a lot of things feeling very disjointed, so what we’re trying to do is make a model where it doesn’t feel disjointed, where you’re not repeating yourself over and over again, and where things feel really integrated.”

Ducar, a psychiatric nurse practitioner who also joined the clinic recently, noted that the clinic has done a good job of creating a welcoming environment.

“Something that I’ve seen in my recent time here is, patients come in and visit even if they don’t have an appointment with a provider, which is pretty spectacular,” she said. “They just want to spend their time here. With LGBTQ health and mental health there’s not always been the best history. So being able to reduce that stigma and integrate with primary care allows for much easier conversations about mental health and for the conversation not just to be about what’s going wrong with you, but what’s going right with you.”

Extending that welcome throughout the whole hospital is an ongoing project at MGH. That includes training both physicians and staff to not only use the systems, but to ask the right questions and project a safe and welcoming environment.

“If we’re not asking these questions in a fully inclusive and affirming healthcare environment, it all falls flat,” Keuroghlian said. “You can’t just do one thing and not the other. People need to feel safe [during phone intake] before they walk in the door, after they walk in the door, [with] what kind of materials, posters or pamphlets are in the waiting room. [They want to be asked] what is your sexual orientation, your gender identity, your sex assigned at birth. We also have to ask about name and pronouns and then transmit that information so that other staff can communicate correctly.”

Some stigmas may be overestimated

Preliminary research suggests that discomfort with SOGI questions tends to be more imagined than actual, Keuroghlian said.

“There was a large study that found that 78 percent of staff were convinced patients would refuse to provide their sexual orientation, but the same study asked patients and only 10 percent of patients refused to provide their sexual orientation,” he said. “Another study had two demographic forms, one with SOGI information, one without. It found that there was no difference in people being offended by the form with SOGI questions than the one without, and the percentage offended at all was only 3 percent.”

In Kellaway’s firsthand experience, when it comes to patients, the ones who need the new fields tend to be appreciative and the ones who don’t will just brush the question off. And staff tends to be most concerned about learning the right terminology to ask the questions without offending anyone.

And when it comes to staff, their concerns tend to be more about "getting it right," and evaporate once they’ve been trained.

“I think a lot of folks sit on this ability to add SOGI to the registration record even if they could because they’re make assumptions about discomfort,” Kellaway said. “Discomfort on the side of the patients being asked, and discomfort on the part of the staff that have to do the asking. From my experience, you would be surprised and you have to have faith in your staff. As people who care about patients, they feel the need to be educated in order to get it right, the terminology, the scripting. But they chose to get into healthcare for a reason.”

Another assumption that isn’t borne out by the data is about which sorts of hospitals are willing to adopt SOGI data nationwide.

“When we looked at the data we actually looked at it by rural versus urban areas,” Grasso said. “And the rural areas actually did a better job of collecting and reporting data. And this is where the data becomes so critical, because I think it really can dispel some of those fallacies that gay people don’t live everywhere or transgender people don’t live everywhere, or people aren’t getting care at small places or don’t want to provide that information in a small health center, because in fact they do, and they’re actually doing a better job of collecting it.”

The right thing and the smart thing

Massachusetts General is far from the only hospital in the country working on improving care for transgender and nonbinary patients. But the staff there is making a dedicated and visible effort — and they hope other hospitals will follow suit.

“If anyone is ever reading this article and feel like they’re waiting for that culture change, and don’t know when it’s going to start, one thing that we really know is with the large rate of suicide in the trans community, one thing that brings that down to average levels across the nation is support,” Ducar said. “It’s a team effort. Everyone has a part to play, and surely, no matter where you are in your journey everyone can offer support.”

Goldstein added that the demographic trends will favor hospitals that go out of their way to serve this community

“This is the right thing to do but it’s also the smart thing to do, because this is a growing population,” he said. “Right now about 0.5 percent of the adult population identifies as trans or nonbinary. Recent research has shown that about 2 percent of people under the age of 18 in the US identify as trans or nonbinary. This is a growing population that is going to come into the healthcare system and we’d better get it right, because otherwise they’re going to go someplace else.”

Ultimately, though, it isn’t the business savvy that drives Goldstein, Frey-Vogel, Keuroghlian, Grasso, Ducar, Dombrowskas and Kellaway.

“We have a mission to take care of everyone who’s around us, and that includes the trans and nonbinary communities, it includes anyone who walks in that door,” said Goldstein. “So every time I meet with hospital leadership about trans health and why it’s so important, I always say ‘This is part of our fundamental mission. We are doing this because trans folks are walking through the door every single day. They need to have a bathroom they feel comfortable going to, they need to have an EHR that understands who they are, and they need to have a doctor or nurse taking care of them who’s capable of understanding who they are and what is their gender identity.’”