After undergoing ankle surgery in 2014, Lore Graham noticed something zir’s surgeon hadn’t. Graham’s gender identity and name were indicated on the last page of zir’s medical records.1
“I got deadnamed2 all throughout my surgery. They didn’t have any note anywhere else in my file,” said Graham, a 29-year-old who works as an administrative coordinator at a Boston, Massachusetts university. “I’m glad they had something, but I’m upset that it wasn’t more prominent.”
Graham’s unsure, but ze thinks the information came from Fenway Health. Ze’s been a patient at one of Fenway’s three Boston-based community health centers for seven years. There, ze receives transition-related care as well as treatment for more mundane ailments like colds and the common flu. For something more serious, like the ankle surgery Graham needed after ze was hit by a car, Fenway generally refers patients to Beth Israel Deaconess Memorial Hospital.
The fact that Graham’s gender identity was included on a medical record at all was reflective of years of effort by healthcare professionals who sought to normalize the practice of documenting a patient’s transgender status.
Numerous transgender advocates and healthcare organizations interviewed for this story said asking for a patient’s sexual orientation and gender identity should be as routine as asking a patient to voluntarily disclose their assigned sex at birth or their race.
Doctors might need to know whether a patient is transgender when monitoring their hormone levels, for example, or when determining what kind of check-ups they need for sexual and reproductive health.
Jamison Green, an author and executive board member for the World Professional Association for Transgender Health (WPATH), has spent his career advocating for improved healthcare access for the transgender community. He said doctors need to know whether a patient is transgender when monitoring their hormone levels or when determining what kind of check-ups they need for sexual and reproductive health.
“There are situations where it is very important to know what the composition of someone’s blood might be,” Green said. “These are just some of the complex things that need to be known. Trans people don’t always know when you need to give information to a medical provider or not.”
Only some healthcare providers record gender identities, and they don’t always share that information with other doctor’s offices and hospitals, especially if those providers are outside the original network. Since the information isn’t recorded or communicated consistently, transgender patients can face a myriad of problems down the line. Patients may have to reveal their gender identity to each new provider or risk invasive and discriminatory treatment if healthcare workers haven’t received adequate training. If a provider doesn’t understand the needs of transgender patients, important screenings and health complications can easily be overlooked. Healthcare workers can assume, for example, that a transgender man doesn’t need a cervical exam, even though he still has a need for gynecological care.
“[Electronic health record] programmers always thought the binary sex system is great. If they check the female box, we’ve got everything lined up, and it will run smoothly,” Green said. “If one thing is changed — [a transgender woman] needs a prostate exam — the whole thing blows up.”
By providing better training to healthcare practitioners and spreading the practice of collecting demographic data about transgender individuals, advocates and healthcare organizations across the country are hoping to create a more inclusive medical experience where patients are treated for the health needs that they have rather than the health needs they’re expected to have.
“It’s really a tough — a heavy lift if you will — to make things consistent and make things respectful in all aspects,” Green said. “There’s so much ignorance about trans people and trans health in general.”
First Efforts, First Solutions
The history of documenting gender identity on medical records stretches back to the 1990s. When companies like Kaiser Permanente first began recording transition-related medical care, the process was slow and difficult, Green said. Transgender patients’ records would spark questions and confusion among staff members.
“The clerks would say to a trans woman, ‘You haven’t had a pap smear.’ The trans woman would have to say, ‘You’re right, I’ve never had that because there’s nothing there to smear,’” Green said. “There’s people in the administrative aspect who decide, ‘This person isn’t having a pap smear, but they’re listed on here as male, so I’m just going to change their sex [on the form] so we can get that pap smear.”
Because they already served the transgender community, LGBT-centered clinics were among the first to collect gender identity and sexual orientation on their health forms. Fenway Health, for example, started as a drop-in STD clinic in the 1970s. It began serving the LGBT community in the 1980s during the AIDS crisis. By the 2000s, the healthcare provider was collecting identifiers from patients. Around 2010, it modified its electronic health record (EHR) system so patients would be asked about their gender identity or sexual orientation at registration. Collecting that information from the beginning shows it’s just as important as other vital information usually recorded at that time, such as age, sex and medical history.
“Just like you would ask for someone’s race or date of birth, it’s important to know someone’s gender identity so you can treat them,” said Chris Grasso, vice president for Informatics and Data Services at Fenway Health. Grasso, who has worked in the health and technology field for two decades, played a key role in helping Fenway incorporate gender identity and sexual orientation questions into its EHR. She now teaches other medical organizations how to collect demographic data on the LGBT community and coaches providers through the process of analyzing the data they collect.
Collecting at registration is just one approach the center promotes during its training sessions and seminars, Grasso said. Fenway also advocates for healthcare organizations with multiple departments, like hospitals and health centers, to make the name and pronoun a patient uses available to all divisions so that transgender people can be addressed respectfully, correctly and consistently throughout the organization.
“One of the frustrations that we often hear is what happens when a patient may check in for an appointment and then they have to go to another department and make the same disclosure,” Grasso said.
In 2015, one solution emerged. EHR vendors — the companies that provide hospitals and other medical systems with electronic health record software — would be required to include ways for healthcare workers to document sexual orientation and gender identity on medical records. The new certification standard was implemented by the Office of the National Coordinator for Health IT and the Centers for Medicare & Medicaid Services, both divisions of the Department of Health and Human Services that set standards for medical providers nationwide. Those adaptations had to be completed by the beginning of 2018.
Medical systems would receive updates once they paid the EHR vendor of their choice for its services. That payment is usually made on an annual basis, much like a company might renew its right to use a Microsoft Office program. Although the majority of mainstay vendors made the changes required for certification, Grasso said it’s possible that some healthcare providers are still actively using older versions of EHR software that don’t include sexual orientation and gender identity fields.
“Every organization is a little different, and some are faster to do updates than others,” Grasso said.
While EHR vendors were making those changes, Grasso said Fenway provided guidance to companies and suggested other features that were not required for certification, but could be beneficial in serving transgender patients.
“We were encouraging them to think beyond [sexual orientation and gender identity] and think to other data elements, like pronouns, that people have to use,” she said.
Like Fenway, some healthcare providers modified their electronic health record system to include the information long before the certification requirement was announced. Before 2014, transgender patients in Southwest Virginia struggled to find a doctor who would provide treatment, even for common ailments. Robert Slackman, an endocrinologist working with the Roanoke, Virginia-based healthcare system Carilion Clinic, recognized the unmet need in the region and started a transgender clinic, according to a Roanoke Times article. Shortly after, Carilion Clinic modified its system to include a patient’s gender identity. By 2015, Slackman was seeing well over 50 patients, many of whom were willing to drive several hours in order to find competent and compassionate care.
Kim Roe, who serves as vice president of family and community medicine at Carilion, said it’s still common for patients to travel several hours to receive transition-related care through the clinic, which serves between 100 and 125 people. Roe’s job involves coordinating with other leadership in the medical system so that Carilion can provide better patient care and ample staff training. She said she’s proud of the strides Carilion has made in treating insufficiently served communities. In addition to transgender patients, the health provider has also focused on improving the care provided to refugees and their families.
“There’s not a lot of services west of Richmond that provide [transition-related care],” Roe said. “We’ve had people all the way up in the northern part of the Shenandoah Valley that come for our services.”
Roe said the process of collecting gender identity from patients is still not ideal. Carilion’s system doesn’t collect patient information at registration. Transgender patients only have their gender identity recorded if they are being seen by the transgender clinic. If a patient needs to see another doctor, the information appears as a pop-up in their file. Some patients, especially those who had already transitioned years before, have expressed their discomfort with that method.
Roe said she’s spoken to another transgender clinic in Virginia that uses the same pop-up style feature in its EHR. Leaders at that clinic have received similar complaints from some of their patients.
As of January, Roe said the pop-up system was still in place. However, she said Carilion will probably dispense of that system when it upgrades its EHR in mid-2019.
“Once people have transitioned, they don’t want to pop up as something special,” Roe said. “We’re looking for a way to incorporate relevant information in a way that’s not necessarily a pop-up.”
Because Carilion has worked to improve the care it provides to transgender patients, Roe said the medical system has been able to solicit more feedback — both from those who go to the transgender clinic and from transgender people living in the nearly 250-mile area Carilion serves.
When healthcare providers like Carilion collect their patients’ gender identities and sexual orientations, they have an opportunity to identify and address vulnerabilities in their local communities, Grasso said. For example, a gynecology office that sees a high number of cisgender women return for regular checkups could examine whether transgender men are showing up for preventative screenings with the same regularity. If they aren’t, the office could examine what factors might be holding men back from getting necessary preventative exams or what incentives could draw them in.
Although healthcare organizations have been working on ways to collect this demographic data from transgender people, Grasso stressed that patients should be able to answer the questions voluntarily. Some transgender people may fear stigma or mistreatment if they reveal their gender identity, and so choose not to disclose.
Most transgender patients, however, want to be open with doctors about their history. A 2017 study published in Academic Emergency Medicine found that most of the transgender patients surveyed felt it was more important for medical providers to know their gender identity than their sexual orientation. In a related study published in the Journal of the American Medical Association, many of the same researchers found that nearly 90 percent of lesbian, gay, and bisexual people were also fine with disclosing their sexual orientation to a healthcare provider. More than three-quarters of medical workers, however, worried their patients would refuse the information if asked.
“It’s really not the patients who are hesitant about answering the questions,” Grasso said. “It’s the staff.”
‘They Don’t Want To Deal with Me’
As a transgender woman living in rural Tennessee, Jesseka Taylor doesn’t always have a bad experience at the doctor. The 26-year-old makeup artist does worry, however, that she’s the only trans person the doctors in Primm Springs, Tennessee — which has a population of less than 1,000— have ever encountered. She recalls at least three negative experiences at separate healthcare centers in the past two years. In all of those cases, she said she sought out medical help for something besides her transition.
In the summer of 2016, Taylor went to an urgent care center for a sinus infection. Her legal name has not been changed to reflect her chosen name, a fact the healthcare worker checking her in seemed to notice. He asked about her medications, specifically her hormones.
“The whole time he still referred to me as ‘sir,’ even though I told him that I’m transgender and prefer female pronouns,” Taylor said. “He would not let off the sir; it was just sir, sir, sir.”
During a visit at a clinic Taylor had frequented as a child, a doctor asked her about her genitals. She was there with strep throat. A nurse practitioner at a small clinic used Jesseka’s name and pronouns, but also asked intrusive questions.
“She came back in there to sit down and she was like ‘I just want to know, who’s like the man and the woman in your relationship,’” Taylor said. “Obviously, me, you know that I’m transgender, you know that I identify as a female. And she was like, ‘Well, I’m just curious.’ And then her next question was, ‘Do you still use your dick?’ She was like, ‘I’m sorry, I didn’t mean to overstep your bounds. I’m just wanting to know how you have sex.’”
Taylor said the invasive questioning likely stemmed from healthcare workers’ ignorance and lack of experience working with transgender patients. She’s never encountered another transgender patient while going to the doctor. Even when a doctor or nurse is respectful while speaking with her, their demeanor sometimes shifts once they think she’s out of earshot.
“They don’t stick to the she/her, they go back to he/him. It’s like they only do it out of respect for me but then don’t do it when they’re not in front of me,” Taylor said. “I feel like when I go in there, they try to rush me out really quick because they don’t want to deal with me.”
According to a 2015 survey conducted by the National Center for Transgender Equality, Taylor’s experience is not at all unusual. The survey gathered information from nearly 28,000 transgender people in the United States, including U.S. territories and overseas military bases. Among the survey’s more startling findings:
• A third of transgender people who saw a healthcare provider experienced some form of discrimination or harassment or were even denied service.
• A third of respondents overall didn’t go to the doctor because they couldn’t afford it.
• Another fifth avoided the doctor altogether because they were afraid of receiving negative treatment.
Experiences like Taylor’s are a large part of why advocacy organizations urge healthcare providers to offer training that teaches workers how to provide better service to transgender patients. Hospitals that want to take steps forward can start small by seeking out recent standards of care guidelines from non-profits like WPATH or by signing up for training with organizations like Fenway.
When Carilion first decided to train staff who frequently encountered transgender patients, it started by consulting a patient advocacy team made up of LGBT representatives. This panel was able to point out where the medical system was falling short. While the panel is not presently active, Kim Roe said Carilion officials are in the process of determining whether it should be re-formed.
Roe said the training has mostly been taken by employees who work in family medicine and internal medicine. Previous training sessions have focused on how to compassionately work with transgender patients and how to anticipate the medical needs they may have. Special attention is placed on the importance of factors like using the correct name and pronouns to refer to transgender people.
In 2019, Roe said Carilion is hoping to expand that training to include workers in other departments. The medical system is also updating its training materials. Roe said Carilion hopes to conduct new training sessions around the same time the system’s EHR is updated, so any protocol changes can be enacted simultaneously.
“As we become more familiar with the needs of our community, we will try to work toward making it a better experience for our patients,” Roe said. “It’s a continual journey.”
Carilion employees also undergo training to help them overcome any unconscious bias they may display toward someone who has a different set of needs than the average patient. The same training is used to combat medical bias against people with disabilities, Roe said.
Ultimately, Roe said her goal is for trans patients to feel like their health concerns will be heard and addressed by Carilion’s staff. She doesn’t want trans patients to put off necessary care because they fear going to the doctor.
“That’s a message that I really feel strongly about, because I don’t want people to not get their colonoscopy or get regular checkups because they don’t feel comfortable coming for appointments,” Roe said.
Relatively simple practices — like Fenway Health and Carilion Clinic’s efforts to include gender identity on EHRs — can vastly improve care for transgender patients. But not every hospital or medical facility consistently records sexual orientation and gender identity information, and it’s unclear just how widespread the practice has become. In communities located outside of urban areas, transgender patients may struggle to find competent care at all, much less find a doctor who records data about sexual orientation and gender identity.
Additionally, the steps that have been made toward protecting gender identity at the federal level could be challenged or reversed. Since early 2018, the Trump administration has indicated it intends to overturn any precedents set during the Obama administration that would provide transgender people with recognition or protection in the workplace, in education or in healthcare. In October, The New York Times revealed a Department of Health and Human Services memo suggesting that government agencies treat gender as synonymous with sex by adopting a definition that categorizes people solely as either male or female. News of that memo was quickly met with outrage and dismay online. Within hours, transgender activists and allies began using the hashtag #WeWillNotBeErased to criticize the proposed policy.
If federal agencies did adopt the definition proposed by HHS, sex would be considered an unchangeable characteristic that is determined by a person’s genitalia at birth. A transgender or intersex person who wanted to change their gender markers would have to go through genetic testing in order to do so.
HHS is the same agency that oversees the divisions responsible for the new EHR vendor certification standard announced in 2015. It’s unclear if that requirement will be rolled back if the new definition of sex is adopted by federal agencies, though Chris Grasso said it’s unlikely that EHR vendors would remove the features that allow medical workers to record gender identity and sexual orientation. In part, Grasso said that outcome is unlikely because the major EHR vendors largely want to improve how transgender patients’ health information is recorded; some have even created teams that are dedicated to that effort.
“I don’t see them necessarily doing any quick about-face on this,” Grasso said. “So much work has already been done that it would cost them so much money to get rid of it all.”
However, widespread acceptance of the definition could limit the ability of transgender and intersex patients to fight back against medical discrimination. The proposed definition would conflict with and potentially refute court decisions made during Barack Obama’s presidency, in which judges decided that discrimination based on gender identity amounted to sexual discrimination. By ruling that transgender patients were protected under the same civil rights laws as cisgender people, the courts made it harder for hospitals to deny a procedure or surgery recommended for transition-related care if the hospital offered that same procedure for other recognized medical conditions, according to an Associated Press report.
Since that Obama-era decision, critics have argued that protecting transgender patients under sexual discrimination laws would force doctors to provide medical services that violate their religious beliefs. HHS, during Trump’s presidency, has also taken to heart the worry that doctors might be forced to provide medical services they object to. In January 2018, the department released a proposed rule that would strengthen protections for doctors who turn down patients or procedures based on religious beliefs. The proposed rule was aimed not just at shielding doctors who don’t want to serve transgender patients, but also those who don’t want to provide contraceptives or who don’t want to refer refused patients to other doctors.
“Their … proposed laws on [refusals] are a bad thing,” said National Center for Transgender Equality Director of Policy Harper Jean Tobin. She heads the organization’s efforts to advocate for transgender people in front of Congress and also encourages state governments to adopt policies that ensure equal health and work rights for transgender people.
“They’re going to embolden clinicians and healthcare providers who want to discriminate,” she said.
Tobin said she understands if transgender patients are worried about facing more discrimination under the Trump administration. However, she said, they should remember they still have rights as patients. HHS has an obligation to represent transgender people if their privacy is violated during a visit, she said.
“The HIPAA privacy law also applies to all medical information, including information about your trans status,” she said. “It’s not something that should be casually disclosed or shared outside legitimate medical reasons. It shouldn’t be something that should be shared in the waiting room or gossiped among staff that don’t have immediate relevance to your care.”
Tobin said healthcare providers who collect demographic data should make it clear to their patients where that information will be shared and how it will be presented to others who are receiving it. Most healthcare providers inform patients about their record sharing policies through routine paperwork a patient might receive while signing in for an appointment. It can often be up to the patient to ask more questions about how their information might be used and documented.
Ultimately, Tobin said, transgender patients can best ensure they are receiving acceptable medical care by actively seeking out and learning their rights and encouraging the medical facilities they frequent to adopt anti-discrimination policies and training requirements for staff. Patients must be proactive in ensuring their rights have not been violated and in understanding how their information is being collected and used.
“Anything about your medical history could be included in the notes section somewhere. Past surgeries, medication, etcetera, could effectively communicate that a patient is transgender,” she said. “At the end of the day, that should be part of the patient’s decision. Providers are often rushed, even the best ones. It’s good for patients to ask those questions if they’re concerned.”
- Throughout this story, Fenix uses the pronouns ze and zir to refer to Lore Graham. Ze and zir are alternative, neutral pronouns used by some transgender people.
- Deadname is a term used by the transgender community to refer to the name they were given at birth. The names are considered dead once a transgender person has selected a new name.