In September 2024, the Canadian Institute for Health Information (CIHI) released the Pan-Canadian Gender, Sex and Sexual Orientation (GSSO) Data Standard, establishing technical definitions, value sets, and guidance for the consistent collection of gender, sex, and sexual orientation data across Canadian health systems. The Standard formed part of a broader national data framework and was based on the BC Ministry of Health’s GSSO Health Information Standard. An updated version was released in September 2025.
Manitoba-based emergency medicine, critical care, and organ donation physician Dr. Murdoch Leeies is an independent researcher who, in collaboration with CBRC, contributed insights to the document. We spoke with him about his perspective on the development of the Standard, as well as its potential benefits and broader implications.
What is the Pan-Canadian Gender, Sex and Sexual Orientation (GSSO) Data Standard? What does it aim to do?
The Pan-Canadian GSSO Data Standard was developed to standardize the collection and definition of gender, sex, and sexual orientation data in the Canadian health system. This is a step forward from processes and practices that collect a single variable — sex. Sometimes labeled gender, this variable in practice refers to the sex recorded on people's health cards.
The Standard aims to not only more accurately reflect people's sex, sexual orientation, and gender identities, but also to ensure that the collection of these variables are standardized across the country, as opposed to being variably defined or collected from health system to health system. The focus and goal is to improve health equity and inclusive care for 2S/LGBTQIA+ folks. By defining specific data elements and giving guidance around consistent data collection across the country, it helps to create portable patient data that can be used to reflect the entire country, rather than be limited to each individual system.
Why is it important that GSSO information be collected in a consistent and coordinated way across Canada?
When this data isn't standardized and isn't consistent across the country, our health systems are at risk of misrepresenting or underrepresenting 2S/LGBTQIA+ people in the health system. This can lead to data invisibility, fragmented reporting, and data that can't be aggregated. It also means data can’t be used to meaningfully define healthcare inequities or help monitor mitigation strategies that try to reduce inequities. All of this can lead to unequal care.
A national standard provides a foundation for the health system to accurately represent identities of 2S/LGBTQIA+ folks. From work I’ve done with CBRC — like surveying the 2S/LGBTQIA+ community in Canada through Sex Now and Our Health — we’ve heard from the community that they want their healthcare teams to know them holistically, and that includes their gender identities and sexual orientations.
But also through the published literature and from our community engagement session at Summit 2024, we heard loud and clear that community members want meaningful ownership of their data. They were concerned about privacy and the potential harms that they could experience from misuse of their data. A standardized, unified approach across Canada also gives us an opportunity to integrate 2S/LGBTQIA+ community-informed data governance practices and principles into the health system in a structural way.
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More about the Canadian Institute for Health Information (CIHI) The Canadian Institute for Health Information (CIHI) is an independent, not-for-profit organization that provides trusted information on the health of Canadians and how our health systems are performing. For more than 30 years, CIHI has worked with partners from across the country to collect, analyze and share data that helps improve care, policy and research. |
What are your thoughts on governance in relation to CIHI’s Pan-Canadian GSSO Data Standard?
Data governance includes determining who can access what data specifically, and for what purpose. Though there currently does not exist a 2S/LGBTQIA+-created data governance framework to guide GSSO health data collection and use, there are already some structural elements in place to support this work. For example, the Pan-Canadian Health Data Charter that all provinces and territories have agreed to uphold includes person-centred data as one of its commitments. It also calls for inclusive governance of data. As well, there are other community-developed, identity-based data governance frameworks, such as the First Nations Principles of OCAP®, the EGAP Framework for health data collected from Black communities in Ontario, and the Red River Métis Data Governance Strategy.
The bottom line of collecting GSSO data is to increase inclusion in health equity for 2S/LGBTQIA+ people. For that to happen, we need that data to be accessed and used in ways that are consistent with the priorities and the needs of the community, and that can only be defined by the community. I think we need to partner with 2S/LGBTQIA+ communities to understand their priorities and to co-create a 2S/LGBTQIA+ data governance framework that can be implemented in specific jurisdictions where GSSO data is being collected.
Do you have thoughts on community literacy as they relate to the Pan-Canadian GSSO Data Standard? How can we increase 2S/LGBTQIA+ folks’ literacy in these areas?
There is a trend in Canadian research funding where patient and community engagement is recognized as a critical element of meaningful work. Researchers and organizations must integrate authentic community- and capacity-building in their work.
But also, if we’re asking community members their perspectives about issues that they might only have partial understandings of — like the complex and siloed health data systems across Canada — engaging these folks can lead to an incomplete understanding of their needs and priorities. One approach to address that would be to build education into our community engagement processes during our research. That means developing a shared understanding of the issue before soliciting perspectives and opinions.
For example, CBRC’s capacity building programs (e.g., Investigaytors) empower 2S/LGBTQIA+ community members to build knowledge and their own research and advocacy skills, which is a huge facilitator of enhancing community literacy about health issues that impact them.
Do you have thoughts on the diverse attitudes and beliefs re: data collection in our 2S/LGBTQIA+ communities?
From the 2S/LGBTQIA+ community engagement I’ve participated in, I’ve heard the message loud and clear that there are both potential benefits and harms of enhanced GSSO data collection. I view CIHI’s Standard as a national level data standard that defines the variables to collect. It is up to each provincial health system to do the work of implementing the Standard in their jurisdiction. The implementation of the Standard requires us to integrate evidence-based best practices in how the data are collected.
Everyone has different thresholds for privacy and control. One critical element that’s come from previous work on enhanced sociodemographic variable collection is to empower the patient, so that their disclosure of their GSSO information is completely voluntary. It can never be required or coerced from the patient. This is why the development of a 2S/LGBTQIA+ community-led data governance model is needed. It’s a critical step to address the community's concerns and to ensure that 2S/LGBTQIA+ community members control the access to and the use of their data.
Where might the Standard have limitations?
I think the Standard is a major step forward to increase the capacity of the health system to measure existing health inequities and facilitate work to improve the health and wellness of 2S/LGBTQIA+ people and communities in Canada. However, some might view the Standard as reductionist — for some people, their sexualities, gender identities, sexual characteristics, and sexual behaviours are insufficiently captured or represented under this data standard. This, coupled with the risk of harm from misuse of this data, tells me that a community-led data governance framework is urgently needed to ensure that our data are accessed and used in alignment with our community's priorities.
How can we continue to build knowledge and trust in community?
The single best way to build knowledge and trust in the community is to partner with community. Research funders should support queer-led research and require that authentic community engagement be built into the work that they're funding. Governments should fund and support community-based organizations that have a track record of effective community-building.
As an independent researcher, CIHI have been fantastic collaborators, and they're continuing to collaborate on my work in supporting the development of a national 2S/LGBTQIA+ community-led GSSO health data governance framework. They are invested in ensuring that the data Standard is informed by community and that the data is used to help improve the lives of 2S/LGBTQIA+ folks. And they know that that can only happen by engaging with those folks and partnering with them in the process.
Can you share any learnings you might have had in this process of developing the Standard?
It's been fascinating work to be a part of. Partnering with community members and hearing their concerns about privacy, control, and ownership of their data is what led me to understand and realize that there is no 2S/LGBTQIA+ community-informed or led data governance system. I was surprised to learn that. I had assumed that something like that would already exist and be in use. The health system hasn't collected this data before, and so there's never been a need to establish a governance framework for it. But at this juncture, there is a critical need. That's been the most interesting realization from this work.
This interview was condensed by CBRC’s team for length. The views expressed in this article are solely those of the interview subject and do not necessarily reflect the policies or opinions of CBRC or its funders.
