Michael Wolfson is a former assistant chief statistician at Statistics Canada, and a current member of the University of Ottawa’s Centre for Health Law, Policy and Ethics. Bartha Maria Knoppers is a professor, the Canada Research Chair in Law and Medicine, and director of the Centre of Genomics and Policy at McGill University’s Faculty of Medicine. They are both members of the Expert Advisory Group for the Pan-Canadian Health Data Strategy.
Canadians see new and increasingly powerful computerization in almost every facet of their day-to-day lives – everywhere, that is, except for something as fundamental as our health care, where systems are too often stuck in the past.
When we go to the doctor, we get prescriptions printed on paper; lab results are sent via fax; and typically, medical offices have no direct links to any patient hospitalization data. And while the pandemic sparked a mad 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 – this has happened in a largely unco-ordinated way, with Ottawa and provincial governments each developing systems separately.
As a result, even these newest computer systems are duplicative, and they do not communicate across provincial boundaries, or even within some provinces – not even, for example, to connect vaccinations, infections, the genotype of the virus, hospitalizations, other diseases and deaths so they are centrally accessible. And so Canada’s recent health-data efforts have wasted millions of dollars while failing to provide the evidence base needed for real-time effective responses to the fluctuating waves of COVID-19 infections..
This kind of failure is not new. Even before the pandemic, key kinds of data have long been imprisoned by data custodians who are excessively fearful of privacy breaches, even though the data are generally collected and stored in secure computer databases. A broad range of critical health care data remains unavailable – not only for patients’ direct clinical care, research and quality control, but also for tracking adverse drug reactions, showing unnecessary diagnostic imaging and drug over-prescribing. The result is that major inefficiencies in the systems remain hidden – and may actually cause health problems, and even deaths by medical misadventure.
There are many directions one could point the finger of blame, but as a new report from the Expert Advisory Committee to the Public Health Agency of Canada found, the root cause is a failure of governance. Federal and provincial governments have failed to agree on strong enforcement of common data standards and interoperability, though this is not only a problem of federalism. Health-data governance problems are also evident within provinces where one health agency’s data system is not connected to others within the same province.
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 still for public health. What Canadians want and need is patient- or person-centric health data. That way, no matter where you are in the country, your allergies, chronic diseases and prescriptions can be known instantly by care providers.
Private vendor-centric health-data software also pose a threat, as do data collected by powerful tech companies from new wearable technologies that offer to collect your health data for you. If Canada does not act swiftly and decisively to establish the needed governance, competing vendor software and individual data will continue the rapidly growing cacophony of proprietary standards. This trend is raising new concerns about privacy, along with untracked increases in health care costs.
The fundamental importance of standardized, interoperable, securely protected health data has been known for decades. There have been repeated efforts to achieve a modern effective health-data system for Canada. But federal cajoling and even financial incentives have failed. Much stronger governance mechanisms are required, and urgently, as the global pandemic has revealed.
The federal government has the constitutional authority to play a much stronger role, given its powers in spending, 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 health care 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.