For much of his life, Liam Johns has dreaded the doctor’s office.
Liam, 30, isn’t scared of needles. And he isn’t afraid of blood.
The problem starts in the lobby of a doctor’s office, when Liam is asked to sign in.
What happens next — write your name, age, health history and current prescriptions — may seem routine for most people. But for a transgender person, these questions can be uncomfortable.
Depending on the answers — like, whether they’ve had sex-reassignment surgery, or are taking prescription hormones to aid their transition — filling out the form in a doctor’s office is like coming out, all over again.
Beyond the waiting room, transgender patients commonly face two problems: doctors with little to no formal education on trans health needs, and health care workers who misgender them by using the wrong name or pronoun, often without even realizing their mistake.
It’s happened to Liam too often to count, he says.
Liam was born female and began, in his late teens, transitioning to male. He went to several doctors before finding one who would agree to start him on testosterone. Others acted awkwardly when he told them he was transitioning and said they’d never prescribed hormones for a trans patient before.
As his outward appearance became more masculine, Liam also legally changed his name and gender on his driver’s license and his friends and family began using male pronouns for him. He still needed health services that have historically been deemed “women’s care,” though.
For Liam, gynecology visits have always been especially problematic because the nurses and doctors at an OB/GYN office are accustomed to having only women as patients. It took years for him to find an OB/GYN doctor he trusted. Before that, he’d skipped most of his annual check-ups, including important cervical cancer screenings.
Eventually, just the thought of going to the doctor’s office could bring on an anxiety attack.
But as Liam and his husband Duane Danielson tried to start their family, Liam knew he wouldn’t be able to avoid seeing a doctor during his pregnancy. Liam and Duane learned in January 2018 they were expecting and their story is featured in a five-part Charlotte Observer series called #TeamPregnantDad.
For his prenatal care, Liam chose Dr. Ginger Dickerson of Atrium Health, he said, because Dickerson is familiar with specifics of trans health care and helped found the Charlotte’s transgender healthcare collaborative.
But one critical aspect of Liam’s experience was outside of his and Dickerson’s control: The hospital system’s electronic medical records software had no option for listing any sex other than his sex assigned at birth.
This kind of system, according to trans advocates, is one of the main reasons transgender people are often misidentified in their own medical records and misgendered during doctor or hospital visits.
It’s a problem readily acknowledged by Atrium Health’s chief diversity officer, Dr. Kinneil Coltman, who says changes are ongoing to better serve transgender patients. In 2018, Atrium began a pilot program that teams health care clinicians with technology specialists, who manually monitor and update medical records for transgender patients.
Then, earlier this year, Atrium’s patient record software was updated to include a person’s current sex and, if different, their assigned sex at birth. Atrium says this technology is aimed at improving health care outcomes for transgender patients and reducing the number of times they are called by the wrong name or pronoun.
Binary technology updated
Electronic medical records systems help health care providers anticipate the health needs of people based on information like age and sex. In the case of a female patient, for example, the system reminds doctors of the need for a mammogram or a Pap smear.
The system helps doctors analyze test results more quickly and more accurately, showing the normal or unhealthy range for each test based on whether the patient is male or female.
But in Liam’s case, before the most-recent update, the software system was ill-equipped to handle the nuance of a male patient requiring prenatal care or a caesarean section. When Liam made his first OB/GYN appointment during pregnancy, he was automatically enrolled as a female patient even though his driver’s license, insurance and other forms of identification list him as male.
The old system, Coltman explained, was “built in a binary fashion,” meaning patients were categorized according to their birth sex, male or female. Patient records could also list a person’s gender identity but birth sex remained the default.
“Once your gender has been identified on the front end, it sends patients down clinical trajectories that are associated with their sex assigned to birth ... By and large, historically, that’s been working really well. The problem is, it doesn’t work well for transgender patients,” she said.
Hospitals nationally grapple with the issue, Coltman said. New regulations, effective this year, required the companies that provide hospitals with medical record technology to recognize both current sex and the patient’s sex assigned at birth.
‘We see you’
Beyond medical records, Coltman says Atrium is also making progress on training for employees. Trans health topics aren’t widely taught in most medical schools or nursing programs so the hospital system provides supplement courses to its medical workers and a system-wide diversity training at Atrium includes lessons on how to use the right pronouns for transgender patients.
“Nearly everybody wants to do a good job with it but sometimes they haven’t been armed with the right language and the right education to match their good intentions with their interactions with patients,” Coltman said.
“If someone accidentally misgenders someone, what I recommend they say is: ‘You know what, I am so sorry. It is so important to me to get that right. I’ll get it right next time.’ And, it’s important that we get it right next time.”
In Liam’s case, many of the doctors and nurses he and Duane encountered at Atrium used the correct “he, him, his” pronouns even though Liam’s chart would not have tipped them off to do that. Others, though, referred to Liam as “she.” In some cases, Liam and Duane corrected the employees and asked them to use masculine pronouns.
Coltman, though, says she wants both technology and culture at Atrium to change so that transgender patients have a better experience and aren’t carrying the burden of educating health care providers.
“There’s varying degrees of comfort in correcting people in the moment,” she said. “I don’t really want to put that on the community ... It’s ours to own. It’s not OK for us to miss the mark on that.”
Trans advocates say electronic medical records and misgendering have been a longstanding problems for transgender patients.
Discrimination and misgendering have, surveys show, led to nearly a quarter of transgender people in the United States reporting they’ve avoided going to the doctor when they were sick because they were afraid of being mistreated. Those results are from the largest survey of transgender people in the U.S., published by the National Center for Transgender Equality.
Electronic medical record systems are often the underpinning to mistreatment of trans people by medical institutions, says Elena Vera, executive director of Trans Lifeline, a non-profit organization that provides free, 24/7 crisis hotline support for transgender people.
“They set these systems up with assumptions,” Vera said. While patient trajectories based on sex may allow for better efficiencies and automation in health care it “puts patients more at risk.”
When a transgender person is misgendered by a doctor, she said, they are less likely to come back, which results in missing necessary medical care. And, if a trans person is not properly identified in their health care records, doctors and nurses may be unable to provide the best care possible. For example, transgender women prescribed estrogen hormones often need both mammograms and prostate exams to screen for cancer.
At Atrium, Coltman said she wants transgender patients to know the hospital system is attuned to their concerns:
“We see you. We hear you. Your health and your experiences with health care matter tremendously to us and we’re committed to getting that right.”