Transgender people have run into problems getting health care because of medical record keeping that limits treatment options to specific genders, but that could be about to change.

Starting in 2019, Medicare- and Medicaid-eligible hospitals will likely be required to use electronic health record technology from companies like athenahealth and Epic Systems that allows them to record sexual orientation and gender identity data. That would allow, for example, a transgender woman to get coverage for a prostate exam, or a transgender man to get a pap smear.

Electronic health records—the internet-based documents used to track information and treatment for individuals—currently document gender as male or female, which leads to gender-diverse people “falling through the cracks,” Alex Keuroghlian, director of the National LGBT Health Education Center at the Boston-based Fenway Institute, told Bloomberg Law. Keuroghlian is also a psychiatrist at Massachusetts General Hospital.

Health centers that receive federal grants have been required to report sexual orientation and gender identity data to the Health Resources and Services Administration since 2016. Those requirements were a “game changer,” Keuroghlian said. Because of them, EHR vendors have begun building in fields for a patient’s chosen name, pronouns, gender, and legal sex. Vendors have also begun making changes to when EHRs use legal sex or gender, among other system improvements.

The health-care industry is “not where we need to be” with collecting gender information for EHRs, Jesse Ehrenfeld, chair-elect of the American Medical Association board and director of the Vanderbilt Program for LGBTI Health, told Bloomberg Law.

“We’ve built ourselves a system that is so complicated, primarily because we followed these binary trajectories,” Jamison Green, former president of the World Professional Association for Transgender Health, told Bloomberg Law. “That makes any variation difficult to deal with.”

“By not actually addressing what kinds of variabilities exist in people’s sexual behaviors, we blind ourselves to potential solutions to these problems,” Green said.

Testing

Athenahealth streamlines the workflow for providers by having its EHR system suggest tests based on a patient’s sex, Scott Mackie, chief experience officer at athenahealth, told Bloomberg Law. But those suggestions can create conflicts for transgender patients by suggesting tests that are not appropriate based on the patient’s anatomy. The system may also fail to recommend needed tests for transgender patients, which can lead to insurance companies denying coverage.

To prevent denials, patients will sometimes switch their sex on their insurance and then switch it back after the procedure has occurred, Keuroghlian said. This can take a mental toll on transgender patients and can be time-consuming for providers.

Procedures need to be covered based on the organs a patient has, not gender, Keuroghlian said.

“The whole system is set up in a way that revolves around this binary gender paradigm” of male or female, Keuroghlian said. Guidelines for healthy ranges in tests are listed for men and women, but have yet to be determined for transgender people.

Transgender patients not fitting into the way medical records are currently set up can mean delays in care and stress for patients if they are denied coverage, Devin O’Brien Coon, medical director for the Johns Hopkins Center for Transgender Health, told Bloomberg Law.

Athenahealth has added a modifier to the insurance claims process if the patient is transgender, which is aimed at preventing denial for a procedure, Allie Brouckman, product strategy manager at athenahealth, told Bloomberg Law.

Changes to Systems

Epic Systems re-examined every place where sex was used in its EHR system to determine what was most relevant in that scenario, Janet Campbell, Epic’s vice president of patient experience, told Bloomberg Law. Campbell is also a member of the Electronic Health Records Association and a former chair of its clinician experience workgroup.

Building sexual orientation and gender identity fields and integrating them into the EHR system has a big cost, O’Brien Coon said. Hospitals need to involve many people, including their information technology staff and outside consultants. The process took 18 months for Johns Hopkins Hospital, but it has “paid off in patient care,” particularly in the emergency room setting, O’Brien Coon said.

Questions

The best practices for transgender care would lead to better care for everyone, Keuroghlian said. Normalizing asking patients about their sexual orientation and gender identity fosters conversations about sexual health and gender for all patients.

These questions are “as relevant to the health care we provide as any of the other questions,” Keuroghlian said.

A 2017 study in the Journal of the American Medical Association found 78 percent of health-care professionals believed patients would refuse to provide information about their sexual orientation, while only 10 percent of patients reported they would.

A 2018 study in the Health Services Research Journal found only 3 percent of patients asked about their sexual orientation and gender identity were distressed, upset, or offended by the questions.

Vendors have made the ability to record this information available, but “very few practices have gone to universal adoption of routine data collection,” Ehrenfeld said.

Having the ability to collect this information doesn’t mean that doctors and medical staff know how to use it or where to find it, Keuroghlian said. “If it’s not super accessible and the staff aren’t trained, … then it falls flat.”