Filling out forms is an experience every patient goes through. But for queer, trans, and Two-Spirit people, that experience can be fraught with challenges.
Crucial information and fields are usually missing from these forms. We are typically met with binary options that conflate sex and gender, and are generally assumed to be straight.
It doesn’t have to be this way. Electronic health records (EHRs) are increasingly used to keep track of medical information in Canada. As a digital option, they can be shared across healthcare services and systems. Yet there is no standardized approach for recording gender, sex, and sexual orientation. For example, most EHRs aren’t set up to properly capture trans identities. This means trans patients may be deadnamed or misgendered when new healthcare workers reference their charts.
“I don’t actually like blood [testing] places,” one person describes. “They misgender me all the time and they don’t care. They see the “F” on the thing and then they don’t know how to relate it to the blood test work.”
This isn’t just a record collection issue. Appropriate recognition of 2S/LGBTQIA+ people’s identities within EHRs and among healthcare providers is critically important to ensuring we receive the care we need. When it comes to sexual health screening this information impacts the type of tests required (and offered), and whether other interventions like PrEP could be appropriate.
In other words, when our records don’t match our lived experience, we can lose out on the care we need. Trans and gender-diverse people, for instance, can miss out on getting informed about breast and cervical cancer screenings since many clinics conduct outreach based on the gender/sex recorded in health records.
To improve the experiences of 2S/LGBTQIA+ patients in the healthcare system, we’re joining a growing list of organizations calling for a change to EHRs in Canada.
This includes calling on Health Canada to provide federal leadership, not only to encourage the adoption of queer and trans identities in EHRs, but also to develop standard definitions and coding schemes. We’re also demanding that EHRs reflect the unique health needs and diversity of 2S/LGBTQIA+ communities, and that provincial and territorial governments train and raise awareness among healthcare workers so they can provide culturally competent care.
But it’s not enough to reorganize our record systems and move on. Successfully integrating queer and trans identities in EHRs will require a coordinated effort to support queer and trans patients as they navigate the system. As these changes are planned and integrated, community engagement should be prioritized to ensure implementation occurs safely and with the needs of diverse 2S/LGBTQIA+ communities in mind.
There is a massive opportunity before us. Collecting these data in a standardized way will provide valuable information about the needs of 2S/LGBTQIA+ people as a whole. If we do this right, we can gain unprecedented insights through healthcare data—but if queer and trans identities aren’t captured in a uniform way, our communities won’t benefit from this innovation.
It’s time for these systems to see us as we are.
