An urgent case for action on Canada’s health data

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By Ewan Affleck and Vivek Goel

Canadian governments have invested heavily to advance the use of health data, often without a clear national vision. As a result, an inconsistent approach to health data harms health outcomes, drives up sector costs and increases inequalities.

We could learn something from Canadian banks, which came together in 1984 to establish a shared digital platform called Interac, giving customers of competing businesses the ability to do basic transactions at any ATM. Your information and ability to access your money follows you, regardless of your bank, branch or location.

Almost four decades after this innovation, most Canadians still struggle to access, manage or consolidate their own vital health information. Why has the health sector failed where the financial sector has succeeded?

As the most recent report of the Public Health Agency of Canada’s Expert Advisory Panel makes clear, the link between data and the health and well-being of Canadians cannot be overstated. The healthcare industry relies on data to guide nearly every decision, from choosing an antibiotic to treat a simple urinary tract infection in an individual, to national pandemic policies that affect millions of Canadians.

If health data is missing or inaccurate, health care and public health services can be seriously compromised and the health of Canadians damaged.

The individual data of Canadians, called personal health information, is used to guide the care a person receives. Without the ability to access medical records and other forms of personal information, a health care provider will have a hard time providing safe and informed care.

Population health data, which is the pooling of information from many sources, is used to provide public health services and to inform activities such as the evaluation of immunization programs or research on. cancer treatments.

The challenge is that data is poorly organized and managed in Canada.

The Supreme Court ruled in 1992 that personal health information in Canada should be controlled by patients, while health care providers have the physical record of that information. Almost 30 years later, patients continue to have limited control over their data, which remains under the legislative authority of health service providers called custodians.

Most of the healthcare providers that a patient sees are defined as custodians, whose primary responsibility is to manage and protect personal information on behalf of patients. The by-product of this approach is that a patient’s data is shared among the providers who care for them, often in separate systems.

In addition, the legislation that defines guardianship varies from province to province. The result is a fragmented and inefficient jumble of data silos: clinics, hospitals, research institutes and health services in 13 jurisdictions with conflicting rules and regulations that often hamper efficient use of data.

You could say that the excellence of health data in Canada is doomed to failure.

The healthcare industry has invested in digital technology for years under the mistaken belief that it will immediately solve our healthcare data problems. What we haven’t understood is that the real barrier to effective use of health data is not just technological, but a matter of policy and governance.

A health data policy framework based on the retention of physical records is doomed to fail in the digital age. To fulfill their promise, health data in Canada must be people-centered.

Data designed around a patient determines the alignment of workflow, policies and technology between service providers and jurisdictions. Healthcare providers should continue to have the ability to access personal information for individual care purposes, while a new role – healthcare data managers – should be mandated to hold data based on population for the public good while ensuring privacy and confidentiality.

This will only happen with a redesigned approach to health data policy and governance in the digital age.

Many will say that our federation is bound by an unalterable separation of powers in health matters by province and territory. The simple answer to this is that there is nothing in our federation’s constitution that prohibits jurisdictions from aligning with common health data standards. Competitive banks have achieved this level of cooperation for the benefit of all; the same is true for all levels of government in Canada.

Data brings knowledge and knowledge brings wisdom. Our mismanagement of data robs us of both and threatens the safety of Canadians. We can do better.

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