By Michael Wolfson and Bartha Maria Knoppers
We all take for granted that travel sites can tell us almost instantly what seats are available for a flight virtually anywhere in the world, today and for months ahead. But when we go to our doctor, we get prescriptions printed on paper, they receive lab results via fax, and typically, they have no direct links to any of our hospitalization data. With the advent of the pandemic, there was a scramble to set up many new data systems – to track who was infected, where there were ventilators, who has been vaccinated and with which vaccine – separately in each province, and again at the federal level.
This mad scramble has been largely uncoordinated, the computer systems are duplicative, and they cannot talk to each other – across provincial boundaries, and within some provinces. Not even, for example, to connect vaccinations, infections, the genotype of the virus, hospitalizations, other diseases and deaths.
Canada’s recent health data efforts have wasted multi-millions of dollars while failing to provide the evidence base needed for real-time effective responses to the fluctuating waves of COVID-19 infections. A new report from the Expert Advisory Committee to the Public Health Agency of Canada highlights the urgency for effective action.
This kind of failure is not new. Key kinds of data have long been imprisoned by nervous “privacy chilled” data custodians, even when they were collected and stored in secure computer databases. A broad range of critical health care data remains unavailable, not only for clinical care, research and quality control, but also for tracking adverse drug reactions, showing unnecessary diagnostic imaging and drug over-prescribing – likely hiding major inefficiencies.
Some of these data failings may actually cause health problems and even deaths by medical misadventure.
The fundamental importance of standardized, interoperable, well curated, securely protected health data has been known for decades. There have been repeated efforts to achieve a modern effective health data system for Canada. So far, these efforts have largely failed.
There are many directions one could point the finger of blame, but in line with this new report, the root cause is a failure of governance. In part, this is due to the failure of federal and provincial governments to agree on strong enforcement of common data standards and interoperability. But health data governance problems are also evident within provinces.
How did this happen?
What Canada and the provinces have now is essentially provider-centric health data systems – not just one but many kinds for hospitals, others for primary care, and yet others for public health.
What Canadians want and need is patient- or person-centric health data, so no matter where you are in Canada, if you have an emergency, your allergies, prescriptions and chronic diseases can be known instantly by your care providers.
Emerging with the unprecedented size of tech companies, is also private vendor-centric health data software as well as proprietary use of the patient data they collect directly from these health information technologies. If Canada does not act swiftly and decisively to establish the needed governance, competing vendor health data software and individual data are already creating a cacophony of proprietary standards. This accelerating trend is raising dramatically new concerns about privacy, along with untracked increases in health care costs.
Over the past decades, there is ample evidence that federal cajoling and even financial incentives have failed. Much stronger governance mechanisms are required. The global pandemic has shone a spotlight on the urgency of this need.
There is no question that the federal government has the constitutional authority to play a much stronger role, given its powers in spending, quarantine (public health), statistics, as well as “peace, order and good government.” It also has readily available regulatory powers under the Canada Health Act.
Of course, high quality data collection and data software have costs. But given the tens of billions of healthcare dollars the federal government is providing to the provinces through fiscal transfers, it is long past time they leveraged this clout — using both carrots and sticks – so Canadians can finally have informed, accessible health data when and where they need it most.
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About Michael Wolfson and Bartha Maria Knoppers
Michael Wolfson, PhD, is a former assistant chief statistician at Statistics Canada, and currently a member of the Centre for Health Law, Policy and Ethics at the University of Ottawa.
Bartha Maria Knoppers, PhD (Comparative Medical Law), is a Full Professor, Canada Research Chair in Law and Medicine and Director of the Centre of Genomics and Policy at the Faculty of Medicine, McGill University.
They are both members of the Expert Advisory Group for the Pan-Canadian Health Data Strategy.
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