Systemic trans exclusion: How can health ICTs make a difference?

Health information communication technologies (ICTs) have an important role to play in achieving health equity for trans people. Electronic medical records, digital complaint management systems, digital health surveillance systems and other health ICTs collect and communicate information that is increasingly being used to determine who gets access to which treatment. Users of these health ICTs make assumptions about the accuracy of the information and take action based on this information.

Identifying trans people within health datasets is vital to monitoring health disparities within the population and enacting appropriate policy decisions. With reliable information, these health ICTs can help to reduce health inequities. However, in their mediation of access to health care, there is a risk that they can exclude trans people, adversely affecting the health outcomes by amplifying existing inequities.

Who are trans people and what do they need?

Trans people are people who do not identify with the gender assigned to them at birth. Some trans people identify as transgender, while others identify with other gender diverse identities. These communities (referred to here as the umbrella term trans) have a diverse range of lived experiences. They have the same health needs as cisgender (non-transgender) people, but also may have trans-specific care needs, such as hormone replacement therapies and surgeries.

This population experiences disproportionate health disparities caused by social determinants of health. Social stigma, discrimination, assault, rejection, and lack of access to competent health care makes it difficult for many trans people to engage with the health care they need to achieve well-being.

I could be Superman, but not Katherine!

Back in the early days of my gender transition, I had changed my legal name to Katherine, but my legal gender was still male because I lived in a country where it wasn’t possible to change legal gender. I went to my bank to update the name on my account, and I was blocked by an ICT that really didn’t want to cooperate.

The clerk told me I couldn’t change to a female name without a female legal gender. After a chat that drew some attention from the customers around me, and feeling exasperated by the situation, I eventually told them ‘So, you’re telling me I can change my name to Superman, but not to Katherine?!?!’. I told them that I wasn’t leaving the building until my name was changed in the system. I didn’t have a choice. Legally, I had to use the name Katherine, and eventually they relented and changed the name on my bank account.  

The problems I had that day weren’t caused by someone intentionally blocking a trans person. The clerk I spoke to didn’t intentionally discriminate against me. They were just stuck within a system that hadn’t considered my needs. The problem I encountered stemmed from a systemic barrier that was created when the people creating the policies and the ICT failed to consider the possibility that a trans person would need to change their name or their gender within the system.

In this case, it led to mild embarrassment for me, and, like many trans people I know who have been in that situation, I was able to advocate for myself and insist that the change was made. However, when a trans person is faced with such a situation when accessing health care, and they are already in a vulnerable position, it can lead to serious outcomes for their health and well-being.

Cisnormativity and Structural Violence

Many problems that trans people face in relation to health ICTs are systemic issues that hide in the woodwork—in the boring, everyday, mundane tasks like filling in a form or asking to have your name or gender-marker changed in an database. These kinds of issues lead to an inhibition of someone’s potential.

This is a form of violence distinct from stigma and discrimination—a form that Johan Galtung (1969) referred to as "structural violence". It is violence that manifests within the structures. Its source cannot be easily traced back to a specific event, and that makes it difficult to identify and to resolve.

For trans people, many of these systemic issues emerge from cisnormativity, the societal norm that assumes that all people continue to identify with the gender assigned to them at birth throughout their whole life, and that the way they express their gender and understand their gender does not change.

Negotiating access to health care in a cisnormative system

There is a huge burden placed on the shoulders of trans people when seeking health care within a cisnormative system. When faced with a systemic barrier, trans people need to be able to advocate for themselves to educate their health care provider about the care they need. They may even need to change how they dress and present themselves to meet the criteria of the system that expects them to fit into a neat gender category (Linander et al., 2019).

It is not just the care-seeker who negotiates the cisnormative system. Health care providers might try to improve the situation for a trans patient by including their preferred name and pronouns in the database, but the system is resistant to change and, as Wagner et al (2021) found, such efforts can still lead to patients being misgendered and misnamed.

What’s more, complaints related to transphobia can go undetected if they are misclassified in the ICT. As Kirkland (2021) makes clear, if a hospital’s digital complaints system is not designed to gather and classify discrimination, then trans-related civil rights violations can get bundled with general complaints and cannot be dealt with appropriately. What gets measured gets managed, and if the complaints are not detected the systemic trans-exclusion cannot be resolved.

Where to from here?

To build an equitable society, trans people need to have access to health care, be it gender-affirming health care or general care. Their barriers to well-being need to be removed so that everyone has the same opportunity to live a life of well-being. Health ICTs have a role to play in this because, in their development and use, they can create barriers that block trans people from accessing well-being.

A first step towards this goal is to recognize trans-exclusion as a systemic issue, and to understand transphobia beyond the interpersonal level. While issues like stigma and discrimination certainly contribute to health disparities, there are also systemic problems. Even though these may not the result of malicious intent, they still amplify trans inequities and need to be described clearly and understood before they can be resolved.  

Systemic barriers are invisible until they are challenged. Identifying them involves close collaboration with members of the transgender and gender diverse communities to help developers and users see where their information system might be harboring barriers.

In the case of my bank, several trans people tried to change our names around the same time, which highlighted a problem that eventually led to policy change and a software update. But this situation could have been avoided altogether if the bank had preemptively sought advice from the trans community. These kinds of efforts won’t bring about trans health equity overnight, but it’s a step in the right direction.