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Transgender individuals face unique challenges when it comes to navigating the healthcare system, and the issues they encounter extend into patient documentation as well. Modern EHR systems are often ill-equipped to document non-binary values or to match patients who may have transitioned from a previous identity.
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Part of the problem with transgender patient documentation is that EHRs generally don't do a good job of identity management and demographics, said Dan Cidon, co-founder and CTO of NextGate Solutions, a company that develops and sells enterprise master patient index technology.
"One of the many challenges in identity management is for things like this, where there are certain values that are volatile in the sense that they change, like a last name change or maybe somebody changes their address or phone number," Cidon said. "But it could also be in this area of gender and gender reassignment, where not only will what was once considered a fixed value actually changes ... it's [also] something that needs to be accounted for."
Cidon added, "There are a lot of systems designed with the classic 'M,' 'F,' and if you're lucky 'U' for unknown, but there could certainly be more designations than that."
There also needs to be a way to include sexual identity and gender identity in patient documentation, the latter of which should be optional, said Kristie Overstreet, Ph.D., a psychotherapist and clinical sexologist in Jacksonville, Fla.
"EHRs could provide a place to document gender identity by asking, 'What is your gender identity?' Then provide either a list of all identities, including an 'Other' with a blank, or just provide a blank so that the identity can be typed in. My recommendation is to just provide a blank so that it can be entered in specifically with how the patient identifies," Overstreet said.
The next step would be to ask what sex the patient was assigned at birth. It is unnecessary to inquire about gender affirming surgery.
"It is common for medical forms to ask about past surgeries," Overstreet said. "The patient has the ability to enter this information here versus a special place designating gender affirming surgery."
Surgery and sexual health information documentation
"Transgender patients find the direct question, 'Have you had the surgery?' rude and intrusive," said Sue Boisvert, senior risk specialist at malpractice insurer Coverys.
"Culturally competent providers queue up the question by explaining that the patient will need primary care and cancer screening for their reproductive organs, so questions about any surgical procedures the patient may have had are necessary to make sure appropriate care can be provided."
Boisvert added that there are federal standards for documenting sex assigned at birth and gender identity that are based on the Fenway Institute's "Do Ask, Do Tell" guidelines.
"Unfortunately, EHR vendors have been slow to incorporate these guidelines," Boisvert said. "Epic is a notable exception."
Privacy concerns over transgender patient records
Another issue that must be considered when it comes to transgender patient documentation is privacy, Cidon said, because it's not always clear how much a patient wants others to know about their prior identity.
Some places, such as Scotland, err on the side of caution and essentially disregard a patient's prior identity, Cidon said.
"What [Scotland] wanted was basically the ability to say once that identity has changed, all kind of notion of that person's prior identity, whether they change their first name or last name, that should not remain with the record," Cidon said.
'A long way to go' to cultural competency
Finally, there is the issue of accommodating name and pronoun changes. While EHRs have a function to accommodate a name change, such as when a patient gets married and takes a spouse's last name, there is no such feature for pronouns in patient documentation.
"The medical record number will be the same -- and it would be wonderful if there was a unique patient identifier that carried from place to place, but there isn't -- but the name will change," Boisvert said. However, many transgender patients don't have the financial or legal resources to change their name, although a lawyer is not usually necessary for a name change, Boisvert said.
Sue Boisvertsenior risk specialist, Coverys
There can also be more than one step involved depending on the state, and there are fees involved with each step, Boisvert added. Because transgender people are often unemployed or underemployed, they may not have the financial means or transportation necessary to change their name.
"So they will have a 'preferred' name, which they should be called by, [and which] must somehow be reflected in the EHR. And they will have a preferred pronoun, which may be gender-specific such as she or him, or gender-neutral such as they. Preferred pronoun must also be used," she said.
"Currently, neither preferred name nor preferred pronoun are even contemplated by EHRs, so there is a long way to go to make EHR technology culturally competent and compliant," Boisvert added.