Faculty Affiliate, ISSP
Member of the Centre for Health Law, Policy and Ethics, uOttawa
A version of this text appeared as an op-ed published in The Globe and Mail on April 13, 2020.
The following text is a combination of the original Globe and Mail text interspersed with additional insight to provide further context and amplification to make it more accessible for an international audience. The text of the original op-ed is identified as such for clarity.
Up to the week prior to its publication, there was increasing public pressure for the federal and provincial governments to be more open about their projections of the COVID-19 epidemic curves, especially the numbers of cases, deaths, and hospitalizations, and how these trends were likely to affect hospital capacity including ICU beds and ventilators. This pressure in Canada increased as the UK projections from the Imperial College group were disseminated, and increased even more as those projections plus the ones from the IHME group in Seattle induced a dramatic change in the US federal approach.
So finally, in the preceding week, the federal government and several provinces provided some such data. However, from a statistical and epidemiological perspective, these data and projections were very limited, and they generally did not extend far enough into the future to inform Canadians when the stringent physical distancing and lock-downs could end.
Further, I had good reason to believe that one of the impediments was the widespread lack of coherent and timely data. Part of my personal knowledge stems from having been responsible for Statistics Canada’s health statistics program from before 1990 to my retirement in 2009. In this role, I had struggled continually to improve Canada’s health data infrastructure, but repeatedly faced blockages. I was also responsible for a group of truly excellent microsimulation modelers, where among others we had built models of SARS and H1N1.
(op-ed) Canadians are finally beginning to see projections of COVID-19 cases, deaths and needs for intensive-care units from various provinces and the federal government. We are also starting to see simulations that look beyond the next month or two when, hopefully, epidemic curves are clearly flattening.
The simulations cited in the previous paragraph were done by one of Canada’s leading infectious disease epidemiologists. In an interview on TV the week before my op-ed was published, he made extremely critical comments about Ontario’s modeling, and complained strongly about his inability to access the needed data. In general, it is likely that university-based modelers in Canada have stronger analytical capacity than staff within government ministries of health.
(op-ed) Canada’s national data-collection capacity will be critical for the next stage of the pandemic, when relaxing of the stringent physical-distancing measures can begin. Yet our data-collection infrastructure is proving woefully inadequate.
(op-ed) To be effective, an extraordinary and co-ordinated national effort is required, with much more extensive testing and real-time standardized reporting of results, from local to provincial to federal agencies. These data on the tests will be much more powerful for managing the pandemic if they also include pre-existing diseases and risk factors such as smoking.
In Canada, the provinces have the bulk of the responsibility for delivering health care. They also each have their own approaches to data collection. As a result, it is extraordinarily difficult to assemble coherent national-level data. Further, data collections are typically siloed. But for sensible management of the pandemic, especially in the upcoming “relaxation phase”, it will be critical to have not only real-time coherent data but also multivariate longitudinal data.
For example, there are widespread indications that susceptibility to more severe breathing problems is associated with various comorbidities. But there are insufficient data to understand better just which comorbidities are most important – is it the heart disease or diabetes themselves, or possibly the drugs patients have been taking to control those diseases that are the true risk factors. It is also important, for the more sophisticated kinds of modeling, to have better data on the distributions of times between events like admission to the emergency department, being put on a ventilator, and then recovering or dying. The need is for longitudinally linked microdata covering the gamut of patients’ health care encounters, not siloed or aggregated data.
(op-ed) 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 the Canada Health Infoway corporation and provided it with billions of dollars. One of its missions was to work with the provinces to develop interoperable real-time “outbreak detection” systems.
(op-ed) Had these systems been in place even as late as last year, Canada would not have wasted critical weeks and months in reacting to COVID-19. And if these systems were in place now, we could manage relaxing the current lockdown phase with “smart quarantine” and reap the major benefits of returning the economy to normalcy at a faster rate.
Health Infoway was created with the mandate from the outset to work with the provinces to create essentially a standardized pan-Canadian inter-operable electronic medical or electronic health record (EMR or EHR). However, the main mechanism they had to influence the provinces was a 50%, and in some cases a 75% cash subsidy for the software development. Further, given Infoway’s judgment that their focus had to be on patient care, and that they had to be very careful not to raise concerns among the leadership of the medical profession, they continually refused to include in their work anything that made reference to “health system uses” of EMR or EHR data.
(op-ed) So why do we still not have this real-time standardized data-reporting capacity?
(op-ed) One blockage is the constitutional conflict over jurisdiction; the provinces claim almost exclusive jurisdiction over health care. The federal government also plays a substantial role, spending billions on health research and fiscal transfers to the provinces and regulating drugs and devices – on top of the billions given to Infoway – but it has been too timid to use all its powers much beyond ineffectual cajoling.
It is unclear why, at the very highest levels of the federal government, there has been such reticence to use the powers it does have under the constitution, including exclusive jurisdiction over “statistics”, to be more forceful in compelling the provinces to establish the requisite data systems. One possible opportunity in the tragedy of this pandemic is that the very real felt issues with current data flows will finally lead to more effective action.
(op-ed) Another blockage is fear of transparency. It has taken strong public pressure for governments to begin providing even limited epidemic-curve projections on which their policies are based.
Provincial ministers of health are understandably leery of providing the kinds of detailed data which, when carefully analyzed by others, can be used to produce embarrassing information. Further, there is a long history of strong, effective, but behind-the-scenes resistance to providing high quality data to others by the medical profession.
(op-ed) Of course, we need 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 its 2015 report, data custodians too often use privacy concerns to block access, stymieing major benefits of health research and, in the current emergency, support for both smart quarantine and much better modelling and projections.
In a phrase, Canada has long suffered from a “privacy chill”. This is complicated in the past few years by the very real and growing concerns about the sometimes awful behaviour of the huge private social media corporations. It is essential for NSOs and the bona fide academic research community to make a clear distinction between the public good benefits they can produce with highly sensitive and confidential patient data, and the private profit oriented motivations of the far more powerful social media corporations.
(op-ed) What can we do about these completely unacceptable blockages? There are several places to start.
(op-ed) The Canadian Medical Association (CMA) can offer strong leadership by supporting 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 CMA released a study in February 2020 where they call for essentially a real-time inter-operable EMR system that works across all of Canada. However, most of the focus in this detailed study is on aspects of interest to doctors themselves such as billing and liability, with the balance on how this will improve patient care. There is basically nothing on the potential for “health system use” of the resulting data flows.
(op-ed) The private-sector vendors of electronic medical-record systems can immediately cease their profit-capturing data blockages and allow their software to interoperate in real-time with those of other vendors and government systems.
In a number of these systems, the only way to export a patient’s data is as a pdf file, which is completely useless from a statistical perspective. It is obviously in the self-interest of these software vendors to make it as difficult as possible for a provincial government or a doctor’s office to purchase and migrate to a competitor’s software. From its inception, Infoway was supposed to prevent this kind of vendor behaviour. Provinces have the power to force doctors to use only EMR software that does provide inter-operability, though in general they have not done so.
(op-ed) Provincial governments can agree quickly on more in-depth and uniform data standards for hospitals, labs and physicians so that, along with the federal government, they can quickly and unambiguously assemble these data, especially virus-testing results.
(op-ed) Privacy commissioners need to alleviate the excessive concerns over privacy around health data, to rise above responding only to complaints, and to make it clear that – especially in this emergency situation – they support essential data flows, provided that basic privacy protections are in place.
As far as I can tell, Canada’s privacy commissioners have been totally silent, unlike in New Zealand.
(op-ed) The Public Health Agency of Canada and the provinces can open up their data beyond a few pages to the energy and creativity of Canada’s excellent university-based health researchers and modellers, and support the CIHR-funded pan-Canadian network.
In many areas related to the pandemic, there is an explosion of innovation and creativity around the world, from the search for a vaccine to fabricating ventilators to devices for testing for antibodies. There is an analogous potential for epidemiological data analysis and modeling, but it is being stymied in Canada by the very poor quality and extremely limited data being made available.
(op-ed) In turn, Statistics Canada can expedite a virtual form of its Research Data Centres so that bona fide health researchers can access much higher-quality data with appropriate privacy protections.
Of course, much of the most powerful data for these kinds of analyses will be patient-level longitudinal microdata, whose confidentiality must be protected. Statistics Canada has a network of university-based Research Data Centres (RDCs) within which certified researchers with certified projects can access such data. But they have all been closed as part of the lock-down. Compared to the Netherlands NSO, Statistics Canada has been a real laggard in developing virtual RDC data access. In order to harness and improve dramatically the extent and quality of all kinds of pandemic-related statistical analysis, Statistics Canada could be moving much more aggressively to provide virtual data access, though perhaps in the first instance to a more limited group of bona-fide researchers.
(op-ed) 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 – and finally bring Canada into the 21st century of critical data infrastructure.
I’m hoping, in the climate of the current pandemic, when all sorts of unprecedented public policy initiatives that would be unthinkable in more normal times are being implemented, that the ideas sketched in this op-ed can be acted upon. However, these ideas have been around in Canada for decades, and have not been acted upon up to now. We need to start by understanding why, including the various blockages and vested interests. Assuring the data and analytical infrastructure for managing the pandemic, and over the longer term for maintaining ongoing pandemic preparedness, is a vital role for official statistics.