‘No one is in charge’: Experts warn Canada’s health data chaos is blocking AI progress

The abysmal state of health data in Canada and how this is impairing technological advances such as the use of AI was the focus of the opening plenary panel discussion at e-health 2025, the nation’s largest annual conference focused on digital health.While issues surrounding the lack of interoperability of health data have long plagued the effective use of e-health to improve the delivery of healthcare in Canada it was noteworthy just how dire the situation remains, according to panelists.“Critical patient data is often siloed,” said Erin O’Halloran, vice-president and general manager of Oracle Health Canada, who introduced the panel. “Canada has over 70 EMR (electronic medical record) vendors in primary care alone.”“If we look at data quality, a recent CIHI (Canadian Institute for Health Information) report highlighted the variability of EMR data completeness and standardization across provinces. Free text notes dominate. Structured coding is inconsistent, and duplication leads to clinician fatigue and poor AI model performance.”“We definitely do not lack innovation,” she went on. “We lack connected, governed, high quality data infrastructure to operationalize that innovation.”“Health data is us and it is the data manifestation of our personhood and health,” said Alies Maybee, a patient advocate and Co-Chair of the Patient Advisors Network.“We (the public) need to be more health data and systems literate. If we were all more literate, we could participate in the effective management of our own care. We could engage decision makers in how our health data systems should be designed and governed.” Maybee and other panelists also stressed the need for healthcare providers to also be more literate about health data.Read: Pat Rich: CMA vows to address member drainDr. Ewan Affleck, a Yellowknife physician and outspoken policy advocate on health data issues noted that in the North especially managing health data in the North is “horribly chaotic. We often don’t have the information, and it is certainly burning us out.”As he has done at many recent meetings, Dr. Affleck pointed to the various negative impacts of the lack of data interoperability including its ability to kill patients. “How many people in the room … have had a patient die because of information mismanagement,” he asked the audience. “ I have. I am not interested in going to work and trying to do a good job when I don’t have the tools to do so. It’s not acceptable.”Dr. Affleck noted that the failure to achieve interoperability was not a technical issue but was related to the lack of governance and accountability for health data in Canada. “No one is in charge,” he said.Dr. Muhammad Momdani, director of the Temerty Centre for Artificial Intelligence in Research and Education in Medicine at the University of Toronto, outlined ways in which AI is already being used to improve clinical care.However, he stressed that effective AI algorithms depend on accurate health data. “If you don’t have the data, you won’t have the AI and if you’re not thoughtful about it, it’s not going to work.”O’Halloran noted “AI models are begging for good data, and we’re giving them PDFs, fax machines and handwriting that looks like it lost a bar fight after a Leafs game … if we can’t safely leverage data across jurisdiction and use cases, we’ll never scale the transformative promise of AI.”“Real time information to support real time care is one of the key challenges that we have,” said Maureen Kelly, director of the data stewardship initiative at CIHI. “I think a key aspect of this is around trust. We need to be able to trust the data.”Starting with O’Halloran the speakers identified a number of positive initiatives being promoted by CIHI and some provinces to improve the situation, including federal Bill 72 which died on the order table when the last session of Parliament was prorogued. However, Dr. Affleck argued a more fundamental change was required by amending the Canada Health Act to enshrine the portability of health data.Panel moderator and futurist Zayna Khayat noted that the European Union (EU) is implementing six health data interoperability principles to ensure health data can be exchanged and used across borders and systems within the EU. Estonia was also singled out as a jurisdiction that Canada could emulate.With a large number of health IT vendors in the audience, their involvement in making health data interoperability come about was also noted. Dr. Affleck noted the current relationship between e-health vendors and physicians is “screwed up” and there is a need for the two sides to find a shared value proposition to support a robust technology sector that help supports good health.This year marks the 25th anniversary of the e-health conference with 1,600 delegates in attendance at the meeting in Toronto.Pat Rich is a Canadian health journalist and former editor of the Medical Post. This item originally appeared on his blog site.

‘No one is in charge’: Experts warn Canada’s health data chaos is blocking AI progress

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