Faculty Affiliate, ISSP
Member of the Centre for Health Law, Policy and Ethics, uOttawa
With the first Canadians getting the COVID-19 vaccine this week, the importance of effectively monitoring the rollout of vaccinations is coming to the fore. The federal government has recognized the importance of monitoring data, at least within federal jurisdiction, and the Prime Minister himself recently emphasized the federal government will “be a partner with the provinces …[for] better co-ordination of data.”
The government response nicely recognizes the lead role of the provinces in setting priorities for vaccination. And the federal government appears sanguine about the existing jumble of layers of vaccine-monitoring data systems, including for adverse reactions.
This co-operative federalism is wonderful – when it works. However, for anyone with experience in software, databases and statistical analysis, the vaccination monitoring described sounds like a dog’s breakfast. That’s not good enough when lives are on the line.
Standard adverse-event reporting systems in the U.S. and Canada missed the scandalous connection between Vioxx and heart attacks. Something more reliable is essential for COVID-19 vaccinations, not only for safety but to avoid misinformation from anti-vaxxers.
Canada has world-class potential for statistical surveillance of adverse health events in the electronic health databases housed in each province. But these data often reside in multiple impenetrable silos within each province.
The COVID-19 pandemic has dramatically increased the urgency of breaking down these data silos. One of the most important blockages has been provincial insistence that health care is their show; the only role for the federal government is to hand them more money, no strings attached.
This has to stop.
Specifically, for a vaccine registry and monitoring, the obvious solution is a single standardized system, mandated by the federal government using its constitutional jurisdiction for statistics. The federal government could commission an organization – Statistics Canada is an obvious choice – to immediately develop a secure, real-time data-collection portal or site for critical information on every person who is vaccinated for COVID-19.
This software system would be used in clinics, doctors’ offices and drugstores. The nurses and other health professionals giving the vaccination would enter information, exactly as done for flu vaccinations. But now, some of the information would be federally mandated, over and above anything recorded for patients’ medical records and provincial billing purposes.
Decades of experience have shown that rhetoric about federal-provincial co-operation has continually failed, resulting in the patchwork of incoherent and incomplete data that have been limiting too much of the science for managing Canada’s pandemic, and the health-care sector more generally.
The federal government was successful in eliminating doctors’ extra billing by holding back transfers to the provinces. But with no strings attached, a number of provinces have been shamefully clawing back some of the COVID-19 cash payments the federal government has sent to the neediest Canadians by reducing or cancelling their social assistance. To ensure effective implementation of this monitoring solution, strong fiscal sanctions should be included if provinces do not co-operate.
Real-time federally mandated vaccine monitoring will provide crucial information on vaccination take-up not only by province, but also by neighbourhood, type of vaccine, race/ethnicity and occupation – enabling provincial and local public-health authorities to target vaccinations to the vulnerable. This is not federal intrusion into provincial jurisdiction; it is simply the most efficient constitutionally enabled way to provide critical information.
There is no reason that this kind of software could not be adapted and made available across the country for vaccinations in a matter of weeks, along with speedy agreements on data standardization.
While confidential personal data are involved, Statistics Canada has for decades collected exactly such data in the monthly labour-force survey (recently doing so online), with exceptionally strong safeguards for security and confidentiality.
There are obvious privacy concerns. However, we must be careful not to allow them to overshadow the potentially huge benefits. The framers of Canada’s constitution, over a century and a half ago, recognized the fundamental importance of critical statistical information that is national in scope.
While the proposed data flows may raise concerns among provinces and territories regarding ownership, these can be ameliorated with clear ground rules on how they can access these data.
Privacy commissioners across Canada have adopted the principles of necessity and proportionality as the central criteria for data collections that raise privacy concerns. For pandemic vaccination, with the deaths of potentially thousands of Canadians in the balance, these criteria would clearly be met.
Now, more than ever, Canada needs a strong national approach for monitoring data to ensure vaccination proceeds effectively, fairly and safely.