Equitable representation in identity data supports health for all

A Health Information Science research team was awarded a REACH grant through the Michael Smith Foundation for Health Research* (MSFHR) to further develop CIHR-funded work in modernizing how sexual and gender minorities are documented and identified within Canadian electronic health records.

“We aim to reduce discrimination and stigma by improving how we document gender, sex and sexual orientation,” explained Dr. Karen Courtney, associate professor with UVic’s School of Health Information Science and co-lead on this study.

As progress continues into year three, this team has taken a purposeful approach to testing these health equity concepts. In 2022, they along with other working groups will approach BC communities in partnership with health authorities to ask citizens what they want to see.

“Next steps are to explore how we can translate our equity-oriented, clinician-focused and person-centred interventions into various media then share these tools across BC and Canada,” said Dr. Francis Lau, professor and study lead.

“We need to define ways where we can tailor our knowledge translation tools when identifying sexual and gender minorities across our local, regional and national health care system,” added Dr. Lau, noting the importance placed on getting the language right.

“We’re likely to come away with an extensive list of changes people would like to see,” says Dr. Courtney, noting that the research team now has Collaborating and Convening funding from MSFHR, and a partnership with Trans Care BC. “We also want to ask people where they should start implementing terminology changes and what’s most important to them.”

“We’ve developed ideas for starter projects to get the ball rolling,” says Dr. Courtney, “in case people don’t know were to start. For example, how should gender identity information be shared or not shared within a patient portal. Patient portals give patients access to their own health record data and can be used to support shared decision making with their health care providers. But how much control do people want over what types of information are shared within these systems?”

Also on the team is Kelly Davison, a PhD student with the school and a graduate of the Health Information Science and Nursing master’s double-degree program, and Health Terminology Standards certificate program from the school. He works with Canada Health Infoway’s standards team and has long been an advocate for change in the way we think about electronic health record design to better support health equity.

“Health data justice plays an important role in improving care services for marginalized populations,” Davison explains.

At the root of this challenge is a reality where existing digital health systems are unable to capture gender, sex and sexual orientation (GSSO) data beyond a single sex or gender data field with only male and female options. Without a standardized way to represent GSSO, sex and gender minority people remain largely invisible within the databases of Canadian healthcare systems. 

Currently, Davison co-leads a Sex and Gender Working Group at Canada Health Infoway which has developed a high-level action plan with seven transformative actions to modernize GSSO information practices in our Canadian digital health systems.

Davison has contributed to successful research grants for this work as a UVic student with the support of Drs. Lau and Courtney. Described by school director Andre Kushniruk as “an outstanding graduate student,” Davison studied while working full time as an RN and raising four children with his partner, Michelle.

“I believe that our fragmented health care system can be connected and unified,” said Davison in an interview posted on the Canada Health Infoway website. “As a nurse informatician, it is my professional responsibility to understand the conditions by which these things can be achieved and work toward them.”

Developments continue with a French language translation and the creation of sub-groups to author specific gender identity terms in SNOMED CT, a global health terminology standard that is implemented in many Canadian electronic health records, says Dr. Courtney. Their team is coordinating with the HL7 International Gender Harmony Project, and interest has been raised by other countries.

“This is going to change how we handle gender, sex and sexual orientation data everywhere,” envisions Dr. Courtney. “Some may think it’s just for people who do not fit a binary male or female identity when, in reality, this research will lead to a much more relevant medical language and more appropriate care for everyone.”                                   

*The Michael Smith Foundation for Health Research and been renamed as Michael Smith Health Research BC. We kept the previous name in this story to reflect the timing of this funding award.