When my mom moved across the province to be closer to her grandkids (and I like to think, me), she faced a challenge many Canadians know all too well: finding a family doctor. But once she did, she faced another problem. It turned out that some of her medical history hadn’t made the trip with her.
Instead of a comprehensive medical chart, she had a patchwork of records scattered across different clinics and systems. We were left relying on her memory, and her background as a nurse, to reconstruct years of conditions, medications and test results.
Her experience is not unusual. In Canada, health data is siloed. Records from family doctors, hospitals, labs and specialists don’t always connect. Systems can differ from region to region and even within the same city. This reality makes care less coordinated for patients and, ultimately, less effective. And this burden isn’t shared equally. People who lack the expertise, language skills or support to interpret and communicate complex medical details are disproportionately impacted by disconnected health data. This week, my mom showed me a 13-page form requesting her clinical history ahead of a sleep test. Frustrated, she wondered aloud why this information could not simply be pulled from an electronic medical record.
I can’t help but agree. People in Canada should be mad about the state of our health data. Having just sat with my husband and children in April watching Jeremy Hansen and his Artemis II crewmates fly past the moon, I can’t help but feel the issue with siloed health data is not because of a technical problem. The issue is how poorly we manage, document, consent and govern our data. The problem is compounded by a lack of investment in health data literacy and in engagement with the public. Canadians deserve to have a say and see that their data is protected, used responsibly and leveraged for the public good.
Canada’s health research ecosystem faces similar challenges. Despite significant public investment in research, such as clinical trials, data collected at Canadian universities and hospitals for research purposes often remain on individual researchers’ laptops or on isolated institutional servers, rarely shared or preserved in ways that allow us to leverage that data in the future. Canada has no central repository for federally funded health research, leaving valuable information difficult to access and vulnerable to loss. Failing to share and preserve Canada’s health research data undermines research integrity and reproducibility, and limits innovation.
At the University of Ottawa Heart Institute, in partnership with McGill University, and the University of Ottawa, we have launched ARCHIMEDES (Advanced Research Collaboration for Health Integration, MEDcal exploration and data Synthesis), a platform designed to securely manage, share and analyze health research data. Our vision is to connect health research data generated across Canada and link it with other initiatives that steward research, clinical and administrative health information. ARCHIMEDES is unique in that it can host multiple distinct formats of health research data, such as imaging scans, wearables data and lab blood test results, in a single space. This allows scientists to use multiple pieces of information collectively to analyze data in more complex ways, and at a larger scale, than would be available by considering each type of data in isolation.
ARCHIMEDES’ vision is to contribute to a modern national infrastructure where health data can be securely connected to research data and responsibly used to improve care, support collaboration and accelerate scientific discovery. Such a system would help researchers reuse valuable data more effectively while enabling advanced analytics, including AI-driven approaches that can identify patterns and generate new insights. The ability to discover and validate new treatments faster, provide more responsive diagnosis of health issues and more personalized health care are enormous potential benefits for patients, science and Canada’s economy.
As we build a national health data infrastructure, we know the public’s voice is essential. Concerns about privacy and security are valid, and people should continue asking difficult questions. But as we weigh the risks of change, we also need to recognize the risks of maintaining the status quo. Our current fragmented system already has consequences: it undermines the quality and coordination of care and certainly frustrated patients. It also slows scientific discovery and wastes valuable public investment. Canada could be a leader in leveraging health data for public good, but we’ve got work to do. Canadians shouldn’t settle for a system where their health data is fragmented, inaccessible, or underused, and should push to get a modern, connected data ecosystem where data is securely linked and available to improve care, drive discovery and deliver real public value.
