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. “Doctor 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 Project Japan 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 such as 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.