The Many Layers of Healthcare’s EHR Gender Identity Problem

March 14, 2018
As healthcare providers have shifted from paper records to EHRs over the years, one ongoing challenge has been meeting the needs of transgender patients—specifically being able to properly record their gender identity.

As healthcare providers have shifted from paper records to EHRs (electronic health records) over the years, one ongoing challenge, perhaps an unexpected one, has been meeting the needs of transgender patients—specifically being able to properly record their gender identity.

Indeed, a key problem in this area for patient care organizations has been caring for individuals who are in the process of transitioning, as they could have difficulties getting the suitable care due to how their gender identity is being inputted within the systems. For some, this has exposed organizations to potential privacy issues and other legal exposure points.

At Sidney Health Center in rural Eastern Montana, a small critical access hospital with a clinic attached to it, Sue Casperson is the health information director, privacy officer, and the compliance coordinator. At the core of the EHR gender identity problem at Sidney, and also at many other patient care organizations, is that within the Epic system, doctors have three options to document a patient’s sex: male, female, or other. The issue, explains Casperson, is that “There is no dropdown under the ‘other’ field. So if we put ‘other’ in our medical record, there is nothing under that field that describes what it means.”

She adds that the impact of this could be that for a doctor who has a patient who was male but is now female, versus a female who became male, when it comes to continued care, the change is not noted anywhere. “So when we go to provide continued care, there could be things that providers can easily miss if they don’t have that information available,” she says. And even if the original provider documented the gender identity change in his or her notes, Casperson says that if the patient goes to see another provider, the notes may not all be reviewed, whereas demographic information within the EHR would be more easily reviewed, especially if the new provider uses the same computer system.

Some 190 million patients have a current medical record in Epic’s EHR system, meaning something needed to be done on the vendor development front to remedy this problem. As explained in an in-depth Wired piece in June, titled, “The Battle to Get Gender Identity Into Your Health Records,” pressure from federal health regulators to build the capability within the EHR software to appropriately collect sexual orientation and gender identity information started to ramp up in 2015. First, Federally Qualified Health Centers (FQHCs) were mandated to collect data on sexual orientation and gender identity by 2016. And for outpatient clinics that were attesting to the meaningful use program, they will have to use software that collects sexual orientation and gender identity information by 2018.

While noting sexual orientation can change the pattern of care, in the case of gender identity, doing so can actually change how care is delivered. As such, Epic, for one, created a workgroup to make sure that gender identity would be displayed consistently and correctly by including a two-item gender identity question, according to the Wired piece.

But that update doesn’t apply for every Epic user. Casperson says that her small hospital actually uses a version of the Epic EHR through another healthcare organization in Sioux Falls, South Dakota, a collaborative approach to IT that helps cut costs. But with those savings come problems that arise by not using the vendor’s original foundation package. For example, in Montana and in some of its surrounding states, people cannot change their genders on their drivers’ licenses until they have completed a sex reassignment. So at this point, explains Casperson, “We are not allowed to use ‘other,’ even though Epic does have the [updated] dropdowns available. But the version we are using through Epic doesn’t [even] have that as an option for us,” adding that many of her peers are in similar situations.

The issue is compounded in the Montana badlands, where Sidney Health Center is located, an area with several oil fields and where outsiders from other areas of the country come for short-term work purposes. “Providers do not have all of that information available to them, so if a transgender patient [from outside the area] comes into our ER, there is nothing in our records. So unless the patient tells the provider [that he or she is transgender], we wouldn’t know,” she says.

And this leads to another potential complication—how comfortable are providers with asking patients these kinds of sensitive questions? The Wired piece references a 2015 report which found that 33 percent of transgender people surveyed had at least one negative healthcare experience in the past year related to their gender identity.

Casperson says that she sent out a survey to Sidney Health Center doctors asking if they would feel comfortable using the dropdown to ask patients these questions about gender identity. “I got all kinds of responses, from a flat out ‘no’ to ‘yes we need to do this.’ The doctors who said no are concerned the patients might see it as disrespectful if they were to ask them this question,” she says.

After the survey results were in, Casperson presented the data to her leadership, asking if descriptors were needed and if there needs to be a standard developed, especially with a new patient. “We are simply asking the question so that [the doctor] can take the best possible care of you. That’s what it comes down to and that’s what the medical record information is there for. But they need to do it in a respectful way so that the patient knows it is about getting him or her the best care,” she says.

Casperson adds that some doctors simply don’t want to “push the envelope” and are concerned that they will upset the patient by asking. But from a privacy standpoint, the only thing that matters is needing to know everything about that patient, she contends. “To me, it’s the same as asking if they’re married or asking about something in their past medical history. This is all a part of the medical history. Is it different than needing to know if the patient had a prior knee replacement [procedure]? It impacts the tests you might order and how you treat the patient.”

And if a doctor did not know that information, she adds, the treatment process could suffer.  “Let’s say a doctor has a patient who was a male but turned female. You might not even look for an issue with a prostate or order a PSA [prostate-specific antigen] test if you didn’t know that the patient was once male. You wouldn’t even thinking of it as a possibility. So you can potentially miss something such as prostate cancer,” she attests.

Moving forward, Casperson says the top priority at her organization is making sure that the “other” field in the EHR has a dropdown menu where more information could be collected. But for the time being, “plenty of gaps still exist and there is a stigma that needs to be reduced,” she says.