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Advocates want national standards for LGBTQ identities in medical records

Push underway for inclusion of gender, sex and sexual identity information in health records
City of Toronto officially proclaim June as Pride Month in Toronto and raise the Progress Pride flag at City Hall in Toronto on Thursday, June 1, 2023. THE CANADIAN PRESS/Nathan Denette

Correcting health-care providers who typically assume he’s heterosexual gets tiring for Jeremy Long, who wants his queer identity to be acknowledged and counted in electronic health records.

“It’s taxing on a person’s mental health and their ability to be understood by the world and to have to constantly feel like it’s a piece of the fight of coming out again and again, which can be retraumatizing,” the 38-year-old said from Vancouver.

“People aren’t always asking questions that lead to more understanding. They’re just labelling and so to have to correct that, it feels exhausting,” Long said.

Long, who came out at age 15, said LGBTQ patients should be asked appropriate questions instead of sometimes facing judgment and feeling unsafe when they access care.

Advocates are also pushing for the inclusion of gender, sex and sexual identity information in electronic health records through a co-ordinated and standardized approach across the country.

The Community-Based Research Centre, based in Vancouver, released a report Wednesday calling for the addition of more fields on medical forms in all jurisdictions to capture the full diversity of sexual orientation and gender identity.

Michael Kwag, the centre’s executive director, said that information is either misrepresented or not properly collected in Canada’s health-care system but including it would make it easier to plan for services the LGBTQ community needs.

“Lesbian, gay, bisexual or queer people do have unique health needs and at times also experience higher rates of physical and mental health issues,” Kwag said.

Trans people may also not be screened for breast, cervical or prostate cancer if their electronic health records are not updated, he noted.

The research centre’s report says medical records that properly recognize LGBTQ identities will improve access to appropriate care and lead to better health outcomes.

Kwag said clerical and administrative workers, as well as health-care professionals, should be trained to better understand sex and gender as distinct concepts, with sex referring to someone’s physical characteristics, such as male, female and intersex, and gender meaning how people identify themselves.

He also cautioned health-care workers about the harms of “deadnaming” patients and using incorrect pronouns, which can happen if medical records are not updated to reflect their gender identity.

The research centre’s report recommends Health Canada work with provinces and territories to encourage adoption of evolving terminology to include LGBTQ identities in health records.

Health Canada did not immediately respond to a request for comment. The Canadian Institute for Health Information said it is working with provinces and territories to come up with a national standard on sex and gender data.

Francis Lau, a retired researcher at the University of Victoria’s school of health information science, said that four years ago, he created the ongoing working group on sex, gender and sexual orientation with Canada Health Infoway, a federally funded non-profit working to improve health-care delivery through use of digital records.

Lau, who co-chaired the group until recently, said inclusion of various sexual identities would be a significant step toward modernizing Canada’s medical records systems.

The working group released a national plan two years ago for provinces and territories to consult with various community groups about collecting and using information related to gender, sex and sexual orientation. Some provinces, including Alberta and British Columbia, have published standards on those issues.

He said the group is trying to come up with coding in medical records for various sexual orientations and for those who may be gender fluid or do not want to disclose that information for personal reasons.

“The action plan only talks about what needs to be done,” Lau said. “It left the when, how, who to the jurisdictions and organizations, the governments, because you need time and resources to do it.”

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