Ottawa, provinces must create agency to reform how health data is collected and used, report says

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The federal and provincial governments must create a national agency to set standards for the collection and sharing of health data to respond more quickly to threats such as pandemics and to improve patient care, a new report says.

The report, from a federal advisory group to be released on Tuesday, says governments across the country also need to change privacy laws to allow health records and data to be more easily shared – with patients, medical providers and public-health officials. That would require a significant culture shift away from a system that focuses solely on keeping data secure and private, and toward one that ensures health records and data can be used and shared safely.

The report says the systems across the country that aren’t standardized and can’t talk to each other have limited Canada’s ability to respond to COVID-19, including managing vaccines and tracking variants. More broadly, that reality is also hurting patient care, and could hamper the response to other health crises, the report says.

“We haven’t had this concept that people holding this data should be promoting its appropriate use, its timely use for the benefit of the individuals or for the entire population of Canada,” Vivek Goel, a public-health expert who chaired the review and is also president of the University of Waterloo, said in an interview.

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The report is the second of three from the Pan-Canadian Health Data Strategy Expert Advisory Group, which the federal government launched last year to examine data problems exposed by COVID-19. While the group’s work was spurred by the pandemic, its recommendations are far broader, and call for dramatic changes to how Canadians’ health data are stored and managed.

The report says the systems for managing health records, and the privacy laws that oversee them, were designed and created for paper records and haven’t sufficiently been updated for a primarily digital system.

Most people can’t access their own health records, which also aren’t readily available to health care providers as patients move through the system, the report says. The document calls for a “person-centric approach” that would give patients control of their records and allow all of their health care providers to access them easily and securely.

“An integrated, person-centric health data structure ensures that all health data follows an individual through the course of their life-long care,” the report says.

It adds that creating a national system would require governments to agree on standards to ensure those records can be accessed regardless of where a patient is or which doctor they see.

While the report does not make detailed recommendations about managing such a system, Dr. Goel said it should be overseen by a body controlled by Ottawa, the provinces and the territories that would recognize – and address – the reality that health care falls under provincial and territorial jurisdiction.

“We need an entity that is co-owned, co-managed, co-supervised by the federal, provincial and territorial governments together in setting those standards,” he said.

It would also require changes to privacy laws. The report says current privacy laws turn health care providers into “custodians” of data, which, in turn, creates a “privacy chill” that prompts them to restrict access even if not required. Instead, the report proposes a model of “data stewardship” that “champions data sharing, access, use and protection.”

Dr. Goel said a system that standardizes health data and facilitates sharing with officials and experts in other jurisdictions would help governments identify and track public-health threats such as infectious diseases including COVID-19. He said the pandemic revealed how ill-equipped federal, provincial and local health agencies were to gather and share data.

For example, he said as new variants of COVID-19 emerge, such as the Omicron variant that is dominating headlines, it is crucial to track who is getting sick and how transmission and patient outcomes are affected.

To do that effectively, health officials need access to information not just from their own provincial or local health unit, but the entire country. That doesn’t require the same system for everyone, just systems designed to communicate.

He compared it to the Interac network, which allows transactions to be tracked between banks even if they are all using different systems. “There are models that we can learn from the private sector.”

Dr. Goel said governments would need the public’s buy-in to increase data sharing in this way, but he thinks they can be persuaded. He says patients may actually be surprised to learn how little information is shared for wider public-health surveillance, such as the details they provide to COVID-19 contact tracers.

Ewan Affleck, a doctor and an expert in health informatics who sits on the advisory group, said he routinely runs into problems accessing his patients’ records from other providers or jurisdictions.

He treats patients in the Northwest Territories, which sends many people to Alberta for surgery and other procedures, but he often can’t access their information easily – or at all.

“I have no means of getting it because of jurisdictional legislation laws, privacy concerns, and this impairs my capacity to provide care,” Dr. Affleck said in an interview.

“So we make mistakes, and those mistakes damage Canadians. This is happening all the time.”

Dr. Affleck said the same issues hamper Canada’s ability to track and respond to population-level health issues such as pandemics.

“Whether it is guiding our response to COVID or whether we’re treating a patient for a urinary tract infection, this is all based on our adjudication of information,” he said.

“Digital health in Canada is legislated to fail. We have to change that model, because it’s an antiquated model from the age of paper-based information, which worked well then, but it works terribly now. And it is actually damaging Canadians.”

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