It’s time the federal government used its authority to create critical data infrastructure
Canadians are finally beginning to see projections of COVID-19 cases, deaths and needs for ICUs from various provinces and the federal government. We are also starting to see simulations that look beyond the next month or two when, hopefully, the epidemic curves are clearly flattening.
Canada’s national data collection capacity will be critical for the next stage of the pandemic when relaxing the very stringent physical distancing and shut down policies can begin. Yet our data collection infrastructure is proving woefully inadequate.
To be effective, an extraordinary and coordinated national effort is required, with much more extensive testing, and real-time standardized reporting of testing results from local to provincial to federal agencies. These data on cases need to be connected to patients’ treatment pathways and risk factors, like comorbidities and smoking, in order to understand and manage the pandemic adequately.
These kinds of data flows are obviously feasible with current computing and communication technologies. Indeed, they were feasible 20 years ago when the federal government created Canada Health Infoway as a government corporation provided with billions of dollars. Almost from its start, one of its missions was to work with the provinces specifically to develop inter-operable real-time “outbreak detection” systems.
Had these systems been in place even as late as last year, Canada would not have wasted critical weeks and even months, in reacting to this pandemic. And if these systems were in place now, we could manage relaxing the current lock-down phase with “smart quarantine” with the major benefit of returning the economy to normalcy at a faster rate.
So why do we still not have this needed real-time standardized data reporting capacity?
One obvious blockage is the constitutional conflict over jurisdiction — the provinces claim almost exclusive jurisdiction over health care. The federal government already plays a substantial role, spending billions on health research and fiscal transfers to the provinces and regulating drugs and devices — all on top of the billions already given to Infoway. But the federal government has chronically been too timid to use all its powers much beyond ineffectual cajoling.
Another blockage is fears of transparency. It has taken strong public pressure for governments even to begin providing only limited epidemic curve projections on which their policies are based. Physician leadership, behind the scenes, has long made it difficult if not impossible to use real-time computerized data analysis so the public could see where they are wasting money or providing inappropriate care, let alone pointing out any “bad apples” in their midst.
A pervasive “privacy chill” continues to impede the development of electronic health information in Canada.
There are, of course, very real needs to ensure patients’ sensitive health data remain confidential except as needed in their “circle of care.” However, as the Council of Canadian Academies noted in their 2015 report, data custodians too often use “privacy” to block access, stymying major benefits from health research, and in the current emergency, support for both smart quarantine and much better modeling and projections.
What can we do about these completely unacceptable blockages?
Fortunately, we are seeing major bursts of creative energy and innovation in the face of the pandemic. There are several places to start.
In no particular order, the Canadian Medical Association can offer strong leadership supporting the kinds of real-time interoperable data not only for their own interests and individual patient care, but also for broader health system uses, not least for epidemic detection and management.
The private sector vendors of electronic medical record systems can immediately cease their profit capturing data blockages and allow their software to inter-operate in real-time with those of other vendors’ and government systems.
Provincial governments can agree quickly on more in-depth and uniform data standards for hospitals, labs and physicians so that federal and provincial governments can quickly and unambiguously assemble these data, especially virus testing results.
Privacy commissioners can rise above responding only to privacy complaints and make it clear that especially in this emergency situation, they support essential data flows provided that basic privacy protections are in place.
The Public Health Agency of Canada and the provinces can open up their data and modeling beyond a few pages to the energy and creativity of Canada’s really excellent university-based health researchers and modelers, including supporting the CIHR-funded pan-Canadian network.
In turn, Statistics Canada can expedite a virtual form of its Research Data Centres so that these bona fide health researchers can access much higher quality data with appropriate privacy protections.
The federal government must assert its leadership and authority, using its constitutional powers, to set critical national standards and enforce the collection, sharing and use of public health data — finally to move Canada to the 21st century for this critical data infrastructure
The situation surrounding COVID-19 is changing steadily and the above conditions and regulations may have altered since the date of publication
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