Corax Versleijen has been misgendered in the doctor’s office more times than they can count, but the most recent incident was when they gave birth.

“I’m nonbinary and being pregnant gave me mad gender dysphoria, but it hit me a lot harder when the staff at the hospital, and then my doctors, misgendered me.”

Corax says they’ve told their doctors multiple times they are nonbinary and use they/them pronouns.  

“They’ve made a note in their system, but it still says I’m female.

“It's so tiring having to correct them over and over again.”

Corax isn’t alone in their frustration. The system used by GPs to input patient data is outdated and married to the gender binary, Dr Ari Chuang says. 

Chuang, who is also the chairperson of Pride in Health, says the options are always either ‘mister’ or ‘missus’ and at the moment, there’s no way to get around that.

“There is an ‘unknown’ or ‘undefined’ option which is equally as unhelpful,” Chuang says.

The system is so binary even the reference numbers the labs use are linked to gender. 

When Chuang was transitioning, their gender had been changed in the system but his reference numbers were still in the female range.

“Everything is not set up for anything but the binary.”

Chuang says the system is lacking a place to write assigned gender at birth in addition to gender identity.

“It’s more about documenting the gender identity and then the assigned gender at birth,” Chuang says.

“For example, if you're changing your gender to male, and you’re assigned gender at birth is female, there's nowhere at the moment you can capture all that information.”

Impact on patients

The impact this lack of data storage has on patients is huge and is creating barriers for queer people accessing healthcare, Chuang says.

“You're missing out on a lot of potential screening for the patients.”

For example, Chuang says, trans men still need to get notified for cervical smears, but because they do not want to be registered as female in the computer system, they may not be notified for anatomy-specific healthcare. 

(Responding to this example, Group Manager for the National Cancer Screening Programmes Harley Rogers says “where someone else’s needs are different to what their gender data suggests, ‘sex assigned at birth’ can be manually entered in the National Cervical Screening Programme Register - this will manually include them in the programme”.) 

Chuang also suggests it could be helpful to have a section that can capture what transitions a patient has undergone.

“For example, if [a trans man has] had a hysterectomy and top surgery, then they don't need a follow up for a breast cancer screening and cervical smear.”

Why misgendering patients is harmful

In addition to making sure patients are getting the right healthcare, ensuring queer people aren’t being misgendered or deadnamed (being referred to by their previous name) in the doctor’s office is also important. 

Oliver Freeman had already gone through the process of changing his name and gender in the system when the doctor’s receptionist referred to him by his previous name on the phone. 

“When I corrected her she didn’t seem to believe me and told me again that the system was saying [my deadname] was my preferred name,” Oliver says.

Chuang says that misgendering or deadnaming trans patients can deter them from accessing healthcare. 

In a recent NZ survey that spoke to trans and non-binary people, over a third (36%) of all participants had avoided seeing a doctor when they needed to because they were worried about being disrespected or mistreated as a trans or non-binary person. 

“First impressions last and queer people already find it difficult enough accessing healthcare.

“Even someone like myself, when I go to my own appointments, there’s still that nervousness of being called something that you're not, or mistaken for something, or being called a different name,” Chuang says.

Should pronouns be added to the system?

One option that has been put forward to combat misgendering in the doctor’s office is adding pronouns to the system.

But Chuang says there are pros and cons to this and we need to strike a balance between getting the information we need and not breaching people’s privacy. 

“For example, someone may not be out yet and if you've got a pronoun on there that other people can see, that could potentially be outing them without them wanting to be.

“We know that gender and sexuality are fluid, people will change as they evolve and grow, and there has to be a way to capture that in a way that's informative enough and not too invasive and breaching people’s confidentiality.”

Capturing data on sexuality

Sexuality is also an important factor for doctors to be aware of, especially in the context of sexual health.

In a 2014 NZ study, 63% of gay and bisexual men reported being comfortable with their sexuality being recorded in health software. 

Gay and bisexual men who were out to their GP were more likely to receive more comprehensive sexual health care, including HIV and STI screening, according to a 2015 NZ study.

Joe Rich, chief executive of the Burnett Foundation Aotearoa (previously known as the New Zealand AIDS Foundation), says formally recording a patient's sexuality could be helpful, but there are some important considerations.

“Not all of our community have disclosed their sexuality to the level they would like it recorded in a formal way, and any records of sexuality must have appropriate safeguards in place so that data is kept secure and private,” Rich says.

“Any decisions to move to formally record sexuality in health data should be done in consultation with our communities and with careful consideration of how to do so safely.”

Chuang says he worries that having someone’s sexuality presented on their record could cause doctors to jump to inaccurate conclusions. 

“I worry that that has implications, for example, a doctor might think, ‘Oh, she says she’s a lesbian, so she can’t be pregnant,’” Chuang says.

“I think sexuality and orientation is something that we should just ask for in the context of that particular appointment.”

What Te Whatu Ora has to say

Re: News reached out to Te Whatu Ora and asked how they plan to create a more inclusive healthcare data system for queer people.

Lara Hopley, chief clinical informatics officer - data and digital at Te Whatu Ora, said the government agency is aware of the limitations in how clinicians can work with trans and queer patients.

“We are currently working on how best to address these challenges given the current limitations of our digital systems,” Hopley says.

“This will lead into a wider work programme which will focus on patient-centred standards and protocols to guide the safe collection, storage, access, and use of sex and gender information.”

Hopley says they will work to ensure the data collection is consent based and protects patient privacy.

Empowering queer patients to access healthcare

Oliver Freeman has been going to the doctor at his university for a number of years now and is familiar with the staff who he knows will get his pronouns and name right.

“I’m nervous about leaving university and having to find a new place that probably won’t be so welcoming,” Oliver says. 

For Oliver, knowing the healthcare data system is set up in a way that would help ensure he wouldn’t be misgendered would make all the difference. 

“Knowing I would be correctly addressed would make me a lot more confident to access healthcare.”

Where to get help:

• OUTLine NZ: Freephone 0800 OUTLINE (0800 688 5463). National service that helps LGBTIQ+ New Zealanders access support, information and a sense of community. 
• RainbowYOUTH: A national organisation that provides support, information, resources and advocacy for queer, gender diverse, takatāpui and intersex youth.
• Gender Minorities Aotearoa: Offers information, advocacy, and wrap around support for transgender people of all ages, ethnicities, and backgrounds.

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