Incoherent approach to managing health data in Canada urgently needs fixing

By Ewan Affleck and Vivek Goel

Ewan Affleck is Senior Medical Advisor, Health Informatics, with the College of Physicians and Surgeons of Alberta. Vivek Goel is President and Vice-Chancellor of the University of Waterloo.

Canadian governments have invested heavily to advance the use of health data, most often without a clear national vision. As a result, an incoherent approach for health data is hurting health outcomes, escalating sector costs and expanding inequities.

We could learn something from Canada’s banks, which came together in 1984 to establish a shared digital platform called Interac, giving customers of the competing businesses the ability to carry out basic transactions at any automated teller. Your information and capacity to access your money follows you, irrespective of your bank, home branch or location.

Almost four decades after that innovation, most Canadians still have difficulty accessing, managing or consolidating their own vital health information. Why has the health sector failed where the financial sector succeeded?

As the newest report from the Expert Advisory Committee to the Public Health Agency of Canada makes clear, the link between data and the health and wellbeing of Canadians cannot be overstated. The health sector relies on data to guide almost every decision, from the choice of an antibiotic for treating a simple urinary tract infection in an individual, to national pandemic policies that impact millions of Canadians.

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

Canadians’ individual data, known as personal health information, is used to guide the care a person receives. Without the capacity to access medical records and other forms of personal information, a health-care provider will have difficulty offering safe and informed care.

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

Health data is a ‘fragmented and inefficient jumble’

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 own the physical record of that information. Almost 30 years later, patients continue to have limited control over their data, which remains under the legislated authority of health-service providers called custodians.

Most healthcare providers a patient sees are defined as custodians, whose core responsibility is to manage and protect personal information on behalf of patients. The byproduct of this approach is that a patient’s data is divided between the providers that care for them, often in distinct systems.

As well, legislation that defines custodianship varies from province to province. What results is a fragmented and inefficient jumble of data silos: clinics, hospitals, research institutes and health departments in 13 jurisdictions subject to discordant rules and regulations that often impede effective data use.

It could be said that health data excellence in Canada is legislated to fail.

The health sector has invested for years in digital technology in the mistaken belief that it would immediately solve our health data woes. What we have failed to realize is the true obstacle to effective health data use is not just technological, but a matter of policy and governance.

A health-data policy framework built on the custodianship of physical records is destined to fail in the digital age. To realize its promise, health data in Canada must become centered around the individual.

Data designed around a patient drives workflow, policy and technology alignment across service providers and jurisdictions. Health-care providers should continue to have the capacity to access personal information for the purposes of individual care, while a new role — health-data stewards — should be mandated to curate population-based data for public good while ensuring privacy and confidentiality.

This will only happen with a reimagined approach to health-data policy and governance for the digital age.

Many will say our federation is bound by an inalterable separation of health powers by province and territory. The simple response to this is that there is nothing in the constitution of our federation that prohibits jurisdictions from aligning around common health-data standards. Competitive banks achieved this level of cooperation to the benefit of all; so too can all levels of government in Canada.

Data affords knowledge and knowledge affords wisdom. Our mismanagement of data is depriving us of both and threatening the safety of Canadians. We can do better.

Ewan Affleck is Senior Medical Advisor, Health Informatics, with the College of Physicians and Surgeons of Alberta. Vivek Goel is President and Vice-Chancellor of the University of Waterloo. Both are members of the Expert Advisory Group on the Development of the Pan-Canadian Health Data Strategy.