Health records should incorporate diverse gender and sexual identities, say LGBTQ+ advocates in B.C.

LGBTQ+ advocacy organizations are calling for governments to include more diverse gender and sexual identities in their electronic health record systems.

The organizations say that as understandings of gender and sexuality have become more advanced, health record systems haven’t kept up.

They are asking for Health Canada to take the lead on creating more data fields to capture the spectrum of gender and sexual identities, which they say would create better health outcomes for gender-diverse people.

It comes after a Tuesday report from the Vancouver advocacy organization Community-Based Research Centre called Seeing Us As We Are.

“We don’t really have a good way in a lot of cases now of capturing data that reflects a nuanced understanding of gender,” said Cameron Schwartz, the knowledge translation manager for the centre.

“We want to create a system where health-care providers also feel confident in discussing these subjects and then managing those kinds of conversations.”

The report says restrictive health records can lead to gender-diverse people being deadnamed or misgendered if they switch health-care providers, for instance, and their records are not updated appropriately.

“Lots of people don’t access care because they don’t feel that those clinical interactions reflect their identity and respect who they are,” Schwartz said. “Part of it is … working to create spaces that are safer for people and that don’t assume that they’re cisgender and that they’re straight.”

A row of various LGBTQ+ pride flags.
Advocates say a lack of comprehensive electronic health records could mean health-care professionals keep ad hoc records, which could be problematic if a patient needs to switch health-care providers. (Angela Weiss/AFP/Getty Images)

Identity relevant to clinical care

Alex DeForge, manager of programs at LGBTQ+ non-profit Qmunity, said there are often gender-based assumptions made when someone enters a clinic — assumptions which could significantly affect what care they receive.

“Oftentimes, for example, among queer men, what that means is that they don’t have throat swabs or rectal swabs taken because they’re assumed to have sex in a certain kind of way,” they told CBC News.

“That’s a case where having that information about that person’s actual identity, for example, is really relevant to clinical care.

“Without having that information we really risk missing STIs — in this case — that would then go on to continue spreading in the community.”

DeForge says electronic health records, with more diverse-gender and sexual identities included, could also help health-care professionals better plan vaccination rollouts.

They said any changes to record-keeping should be accompanied by education efforts for clinical staff.

A rainbow-coloured bench with the words 'Diversity Welcome Here'.
Alex DeForge says that assumptions made about someone based on their appearance at a health-care clinic could lead to worse health outcomes. (Ben Nelms/CBC)

A spokesperson for the Health Ministry did not immediately respond to a request for comment from CBC News.

However, they pointed to recently-released guidelines regarding gender-based data collection, which say it is important to ensure data practices do not discriminate based on gender identity.

The standards state that B.C. authorities should not presume a person’s gender based on their sex at birth, and efforts should be taken to protect people’s identities.

Schwartz says he hopes the conversation around more comprehensive health records spreads beyond the province, and that B.C. was a “leader” among the provinces in this matter.