In 2009, Dr. Edward Callahan was overseeing a task force at the University of California at Davis that was tackling the issue of integrating sexual orientation and gender identity information into electronic health records. Most common EHR platforms aren't set up to track gender identity and gender expression, let alone preferred names and pronouns or where a transgender individual might be in the process of transitioning.
Callahan assumed it would be a straightforward process, but it wasn't.
“I thought it would be a simple job, take about a year,” he recalled. “It really only cracked a door.”
The greatest barrier wasn't technical but cultural.
“With all the years of 'don't ask, don't tell' in medicine, there was a belief that it was such a sensitive question,” said Callahan, a professor of family and community medicine at UC-Davis. “People needed to understand why we were asking the question. You're not just making a change that affects one patient, one doctor, but that affects the entire hospital community.”
Seven years later, not much has changed.
“Most hospitals are not doing this yet; most physicians are not doing this,” said Tari Hanneman, deputy director of the health and aging program at the Human Rights Campaign.
The group's most recent Healthcare Equality Index, a national benchmarking tool on lesbian, gay, bisexual and transgender issues, found that only 13% of healthcare facilities in 2014 had an explicit way of recording whether someone's current gender identity differed from the sex shown on their birth certificate. And only 45% of providers were including this information in free-form notes.
The 2014 index included voluntary responses from more than 500 healthcare facilities as well as an independent evaluation of more than 1,500 providers. The Human Rights Campaign doesn't expect much improvement in the 2016 numbers; the preliminary data suggest that only 14% of providers explicitly record this information, though 52% are including it in free-form notes.
“There are still a lot of LGBT people who are invisible,” Hanneman said, adding that the lack of data masks health disparities. Clinicians who don't collect gender identity information also might miss out on performing critical tests like a prostate exam on a transgender woman, Callahan said.
The entries for name and sex are currently fixed fields in an EHR, said Dr. Rajiv Pramanik, chief health informatics officer at Contra Costa Health Services, a county-run health system in the San Francisco Bay Area.
Moreover, he added, the sex that clinicians enter in an EHR can have clinical implications, determining, for instance, what's considered a normal range for certain blood tests.
There are also legal and insurance implications around sex identification, such as whether an insurance company is required to cover a mammogram for a transgender man, said urologist Dr. Howard Landa, a chief medical information officer at Alameda Health System in Oakland, Calif.
Today, more than 200 of the nation's largest employers offer transgender-inclusive employee health coverage, according to the Human Rights Campaign. Medicare also covers medically necessary hormone therapy, as well as routine preventive care, regardless of gender markers.
“Ten to 15 years ago, this wasn't really discussed much,” Landa said. “From a cost basis, it was a huge undertaking and the feeling was it represented a small number of people.”
Current estimates suggest that anywhere from 0.5% to 2% of the population has strong transgender feelings, and 0.1% to 0.5% have taken steps to transition to another gender, according to Matt Jans, a survey methodologist at the UCLA Center for Health Policy Research.
The issue is getting new attention.
This summer, the Obama administration clarified that civil rights protections would block discrimination based on sex, including gender identity. The rules apply to any provider, plan or program that accepts federal dollars and carries out the anti-bias provisions of the Affordable Care Act.
Stage 3 of the CMS' meaningful use program, which sets incentives for providers that meet certain EHR standards, will now require certified EHR platforms to allow users to incorporate data on sexual orientation and gender identity. The new rules were released in early October.
“Fortunately for us, it'll force the vendors to be more agile in this area,” Pramanik said.
Still, the technical challenges may be one of the easier ones to overcome for many health systems.
“You can add more fields to a list and it's relatively simple,” Landa said. “The harder things are how do you manage that conversation with a patient to get the information?”
For Contra Costa Health Services, the process began with an education initiative for its leadership and midlevel management.
UC-Davis made sure its staff members were asking questions in a sensitive manner. For instance, personnel were told to not ask patients about sexual orientation and gender identity at the same time as other lifestyle questions such as “do you drink alcohol” or “how often do you exercise.” It can seem more judgmental than when the questions are included with demographic data, like birthdate, Callahan said.
The California Health Interview Survey did its own study on how to ask respondents about gender identity. Some people were given an explanation of what transgender means and then asked if they identified as transgender. Others got a two-step question asking first about the sex on their birth certificate and then their current gender.
Although both ways of asking the question identified 0.3% of respondents as transgender, the nonresponse rate was much higher for the one-step question. But neither approach resulted in people ending the survey, a response that would suggest they were insulted by the question.
UC-Davis found the same thing.
“There was a lot of fear that people would be offended,” Callahan said. “We've gotten some wonderful feedback from patients who've said ... this is the first time anyone has asked about my life. And they love it.”
