Proponents want national standards for including LGBTQ identities in medical records
Correcting health care providers who assume he is heterosexual becomes exhausting for Jeremy Long, who wants his strange identity recognized and counted in electronic health records.
“It puts a strain on a person’s mental health and ability to be understood by the world and to constantly feel like it’s part of the struggle to keep coming out, which again can be traumatizing,” said the 38-year-old. from Vancouver.
“People don’t always ask questions that lead to more understanding. They just label and having to correct that feels exhausting.
Long, who came out at age 15, said LGBTQ patients are too often judged and feel unsafe when seeking help.
Proponents are pushing for the inclusion of Gender, Gender, and Sexual Orientation (GSSO) information in electronic health records through a coordinated and standardized approach across the country.
The Community-Based Research Center, based in Vancouver, released a report Wednesday calling on all jurisdictions to add more fields to medical forms that would reflect the full diversity of sexual orientation and gender identity.
Michael Kwag, the center’s executive director, said information is either misrepresented or not collected correctly in Canada’s healthcare system. Including it would make it easier to plan services needed by the LGBTQ community, improve access to appropriate care and lead to better health outcomes, the center’s report said.
“Lesbian, gay, bisexual or queer people have unique health needs and sometimes have more physical and mental health problems as well,” Kwag said of issues such as depression, anxiety and sexually transmitted diseases, including syphilis.
Trans people may also not be screened for breast, cervical or prostate cancer if their electronic health records are not updated, he noted.
Kwag said administrative and clerical staff, as well as healthcare professionals, need to be trained to better understand sex and gender as separate concepts. Sex refers to a person’s physical characteristics, such as male, female, and intersex, and gender is how people identify themselves.
He also warned healthcare workers about the harm of “dead naming” patients and using incorrect pronouns, which can happen if medical records are not updated to reflect gender identity.
The research center’s report recommends Health Canada work with provinces and territories to encourage adoption of evolving terminology to include LGBTQ identities in medical records.
In an emailed response, Health Canada said collecting standardized data on sex, gender and sexual orientation is a critical step in understanding health inequality and discrimination.
Work spearheaded by Canada Health Infoway, the Canadian Institute for Health Information (CIHI) and Statistics Canada is seeking to encourage all jurisdictions to adopt common technical and data standards, including recording a patient’s sex, gender and sexual orientation.
“These commitments are expected to improve the quality and safety of patient care and provide decision-makers with a more complete picture of the healthcare system.”
Francis Lau, a retired researcher at the University of Victoria’s School of Health Information Science, said four years ago he established an ongoing working group on sex, gender and sexual orientation with Canada Health Infoway, a federally funded non-profit that works to improving care provision by means of digital files.
Lau, who until recently co-chaired the group, said it released a national plan two years ago for provinces and territories to consult with various community groups on the collection and use of information related to sex, gender and sexual orientation. Some provinces, including Alberta and British Columbia, have published standards on these issues.
An Alberta Health Services spokesperson said provincial standards were developed in 2019 to collect patient information across genders and sexual orientation across all healthcare facilities and pharmacies as part of a system called Connect Care.
It is expected to roll out next year and will also include pharmacies.
However, data on gender assigned at birth is only requested if it is clinically relevant and a patient can choose not to disclose information, he said.
The B.C. Department of Health released a “GSSO Health Information and Guidance” document earlier this year on data collection to support trauma-informed care that addresses barriers to entry such as misnaming, gender mismatches, outings, and missed opportunities for preventive screening.
It includes guidelines for using yet-to-be-specified coding to capture people’s negative experiences in health care, such as transphobia, “gender expression concerns, and “cisnormative bias,” or the assumption that everyone’s gender identity matches their biological sex.
Lau said the Canada Health Infoway Working Group is trying to come up with coding in medical records for different sexual orientations and for those who may be gender fluid or would not disclose that information.
“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.”
This report from The Canadian Press was first published on July 6, 2023.
Canadian Press health coverage is supported by a partnership with the Canadian Medical Association. CP is solely responsible for this content.
