Growing recognition of gray areas in gender identity leads to changes in EHRs

A new field is beginning to pop up on patient registration forms: preferred pronouns. The healthcare industry, notoriously slow to change culturally and technologically, is beginning to speed up in both areas when it comes to gender identity.

To do that, electronic health record vendors and health systems alike are pushing to include gender identity alongside other patient information. As with any piece of data in an EHR, the question is where to put it, which options to include, and what to do with the information once it's there.

But there's a problem: The healthcare industry doesn't like gray areas, and gender identity can be one such area. "From the technical standpoint, electronic health records are structured in such a way where it allows the clinician to capture information that's binary when we're working with a community that's not binary," said Toby Weiss, director of cultural sensitivity at MJHS Health System in New York City.

Indeed, a gender identity can literally be nonbinary. So in the face of software that only has two options, health system informatics directors and others are demanding that their EHR vendors give them ways to describe people whose identities don't fit "male" or "female."

The government is demanding the same—if meaningful use requirements hold, that is. As regulations currently stand, providers must use 2015 edition certified EHRs beginning in 2019; these EHRs must provide fields for recording gender identity, as well as a patient's sex. The Joint Commission also recommends that providers incorporate gender information into patient records—when patients are willing to disclose that information.

Not only does inclusion of such information lead to more compassionate, empathetic care, but it also leads to higher-quality care, Weiss said. "The biggest problem is that EHRs don't allow for fields to capture information that accurately reflects the needs of patients, which can lead to a ripple effect of how care is delivered."

It also doesn't bode well for patient satisfaction. One-third of people surveyed by the National Center for Transgender Equality who saw a healthcare provider in the previous year had at least one negative healthcare experience that involved their gender identity. And 8% of those surveyed who saw a provider in the previous year said clinicians refused to deliver transition-related care because of their gender identity.

Discrimination can begin as soon as a person walks into a healthcare facility, when registration staff often record the patient's name, date of birth and other demographic information—including sex. But they less often record a patient's gender, which can differ from the biological sex assigned at birth.

Later, providers might refer to patients using incorrect pronouns or miss critical diagnostic procedures that might not seem to apply based on superficial appearance alone.

For instance, a transgender man would still need to have mammograms, said Oscar Zambrano, who holds the relatively unique job of LGBTQ patient ombudsman at Advocate Illinois Masonic Medical Center, Chicago.

Or providers might attempt procedures that don't apply: A transgender woman admitted to the emergency department, for instance, wouldn't need to have the standard pregnancy test.

Because of these concerns and others, some providers want a patient's gender and sexuality to be front and center in an EHR, while others think moving it too far into the foreground can make it come up when it's not really relevant.

"I get that it's important to have that gender identity, but I don't think it's any more important than the person's birthdate," said Dr. Kathy Oriel, the sole doctor at Oriel Medicine in Madison, Wis. "To act like being trans is so freaky that you need a bolded and highlighted display field—to me, that's problematic," she said.

"If we lived in a day and age when being trans was just like having an appendectomy, then I'd say have it as predominantly displayed as you want," Oriel said. "But there are huge risks for trans people, and to just make it easier for us to know whether that person needs a mammogram doesn't really acknowledge the huge discrimination that trans and nonbinary people face."

EHR vendors are therefore seeking a balance when incorporating gender identity into their software. For these developers, the issue involves not just cultural and clinical concerns but also data.

"When we first started writing the EHR, a lot of these theories of gender didn't exist," said Janet Campbell, vice president of patient engagement for Epic Systems Corp. "What we started to see was people were using the sex field to mean a lot of different things," she said. Some were using it to signify how to address the patient and others were using it to reflect what's on a patient's birth certificate. The inconsistencies ran both across and within organizations.

The problem, Campbell said, was "a single field representing multiple concepts." In an industry so dependent on standardization and, increasingly, on clean data, this just won't do.

Epic developers, for their part, decided to separate what was once a single field into three fields: legal sex, sex assigned at birth and gender identity.

But the fix didn't end there. "The big thing we needed to do in addition to just capturing that data was to start to use it in the right places in the chart," Campbell said. That meant figuring out what the data meant in different contexts. "Now, by default, things that are used to identify the patient, like a schedule, will show the patient's preferred name and gender identity," she said.

EHRs are sometimes considered gussied-up billing systems, and that association brings up a potential problem with treating gender identity as just another piece of data: Insurers may reject claims because a patient's biological sex isn't the same as their gender identity. "If the legal sex is not the same as the gender identity the patient expresses, there could be a billing issue," Weiss said.

That's in part because insurance companies may require providers to identify patients as either male or female—and nothing in between or outside those categories. But insurers cannot discriminate based on a patient's gender identity, per the Affordable Care Act.

Nevertheless, problems can arise. "If a person is assigned female at birth but they are now legally a man but they still have a uterus and come in for an annual exam, the insurance company may flag that claim because, in their record, that person is a man," said Amanda Skinner, CEO of Planned Parenthood of Southern New England.

Some EHR developers are addressing the problem. Athenahealth, for instance, has come up with a way to analyze self-reported patient data to determine if a patient is transgender. If a patient is indeed transgender, the software automatically adds a modifier to the patient's claim noting that, so insurers are aware at the start of the claims submission process.

Even when those capabilities exist, there's still the matter of using them and understanding them.

For Epic users, some gender data elements are turned on by default, while others must be activated manually. "We want to recognize that if an organization isn't yet ready to capture this information, then it probably shouldn't be doing it," Campbell said. "If you haven't had proper types of training, you could have a situation where someone is accidentally outed."

At Advocate Illinois Masonic Medical Center, near Boystown, one of Chicago's largest gay neighborhoods, staff go through competence training to understand the needs of the LGBTQ community, Zambrano said. "It's important to have appropriate communication with people who experience gender dysphoria or who are gender-fluid."

Cultural training dovetails with logistical and technical training. When providers introduce a new field, they must teach their staff how to use that field—especially when it's somewhere in the software where it's difficult to find.

When vendors don't offer what health systems need, system executives and providers are forced to come up with workarounds. At Metropolitan Jewish Health, for instance, there's a place for gender identity on the demographic screen, but that information doesn't show up on the main screen, which is the one that's most commonly accessed. "We then need to dovetail that kind of workaround with an education campaign so all staff know about this additional field, how to use it and why it's important," Weiss said.

Eventually, Weiss said, "There will be a shift."

"When there's a wave of interest that's continual, it's going to compel the vendors to make changes," she said.

Alongside that technical shift could also be a cultural shift. "I think two years down the road, five years down the road, we're going to see an entirely different landscape—one that is much more conforming to this non-conforming community," Weiss said. "Societal norms are changing. We're just struggling right now in the throes of these complexities."