Yuri Bilinsky, New Pathway – Ukrainian News.
The COVID-19 pandemic has exposed the Canadian health system’s inability to correctly and timely collect and analyse information about different diseases. In his recent commentary for Macdonald-Laurier Institute titled “Assessing the ‘price of caution’ during the COVID-19 pandemic,” a health informatics expert Dr. David Zitner makes a damning verdict that, in Canada, “Policy-makers do not have the ability to know, in real time, when there are overall or local increases in particular illnesses”.
Dr. Zitner goes on: “Despite provincial and federal efforts over many years and the expenditure of billions of dollars, information about clinical encounters and patient health does not stream into a central repository and health information from clinical encounters is not captured and consolidated in a standardized way”.
During the pandemic it has become clear that Canada has not developed early warning systems about disease outbreaks on a national or provincial level. Before the pandemic, in Canada, epidemiology was not done in real time and there was no centralized body which would be able to act upon epidemiologic information in a timely fashion.
The information system for reporting case information for all provincially and nationally reportable communicable diseases, iPHIS, has been in use in most provinces for decades. During the SARS outbreak in 2003, the system was already considered outdated. In October 2003, after the outbreak, the National Advisory Committee on SARS and Public Health headed by Dr. David Naylor, Dean of Medicine at the University of Toronto, made a set of recommendations in a report titled “Learning from SARS”. The report called on the Government of Canada to focus specifically on the needs of public health infostructure and potential investments to enhance disease surveillance and link public health and clinical information systems. This led to creation of the new health information system, Panorama.
Seventeen years since the inception of Panorama, both iPHIS and Panorama are still in use for different purposes in most provinces. The total investment into Panorama over the years has likely exceeded $400 million (including $147 million of federal funds).
At the same time, Panorama, like iPHIS, for the most part is not used for its main intended purpose, disease surveillance and control. Ontario, for instance, implemented the Immunization and Vaccine Inventory Management modules of Panorama. The province did not implement Panorama’s Investigations and Outbreak Management module, as it was deemed not to provide benefits beyond iPHIS.
The problems with COVID-19 control and reporting (i.e. differences between the data on coronavirus cases as reported centrally and by separate public health units across the province) were already obvious when the Ontario government reported in June that it implemented a centralized Public Health Case and Contact Management (CCM) system in 31 of its 34 public health units.
According to Ontario’s Ministry of Health, this system reduces duplication, speeds up processes and allows for more efficient case and contact management work to be completed. The system, in particular, is directly integrated with the Ontario Laboratory Information System which eliminates the need to re-type COVID-19 data which was the case with iPHIS.
Those who have received a lab test indicating they have COVID-19 can also use CONTACT+, an online tool to provide key information and close contacts to the local public health unit. This will help accelerate case management and contact tracing work. Alberta has also rolled out a contact tracing app, AB TraceTogether.
According to David Jensen of Ontario’s Ministry of Health, the province now has plans to extend the CCM system to cover all diseases of public health significance.
Creation of a unified health information and control system is a daunting task for any jurisdiction. Over the past 20 years, progress has been limited. In Ontario, patient-care centric records are currently held in thousands of places with differing data standards. Some provinces have simplified this problem by creating regions that group the hospitals and other agencies into single governance structures. In the early 2000’s, Ottawa and the provinces started Canada Health Infoway, a unified body that enabled the development of systems that collect and share health records. After 20 years of development, most provinces have a system like the Ontario Laboratory Information System (OLIS), for lab reporting, and most can now claim to have the basic elements of what has been called the Electronic Health Record (EHR).
To complicate things, provincial efforts to create health information and control systems may not be enough to bring results. Roger Girard, an independent consultant specializing in healthcare informatics who spent his entire career implementing electronic health records (including as the CIO at Manitoba eHealth), points to the fact that viruses do not know state or provincial borders and that Canada needs a national disease control and management system: “Canada needs a center for disease control and prevention (a U.S. CDC equivalent) that has the authority and expertise to take control during a crisis and to do the planning when things are quiet. This agency needs to be run in a fashion that it is accountable to Canadians as a whole. We need a set of information system tools and databases, and related processes, that are mandated for use across the entire country. We need a place where experts and scientists can work without interference of politics and where information informs action”.
Other prominent experts second this opinion. Amir Attaran, a constitutional and public health expert at the University of Ottawa, proposes to create national co-ordination, standards and goals to fight the pandemic. “During a pandemic, Ottawa is constitutionally supreme if it chooses to be,” Attaran said. Ann Collins, the new president of the Canadian Medical Association, recently told CBC’s The Current “there has been a lack of collaboration and co-ordination” at all government levels. Sandy Buchman, the former CMA president, frequently offered the same assessment (thetyee.ca).
There are also calls to improve collection and sharing of health information at the global level. Stephanie Chin (Stanford University) and Caitlin Chin (The Brookings Institution) recently suggested to explore the establishment of a common data space for highly infectious diseases in order to improve data sharing during global public health crises and mitigate the costs of future pandemics (brookings.edu).
As a result of the current pandemic, Canada’s federal and provincial governments once again came to realize the need to create national standards for collecting health information and quickly transferring it to the federal level. “That has been a weakness for us all along is our ability to actually understand what’s happening nationally,” said Federal Health Minister Patty Hajdu in the Senate on June 26. The government is now making efforts to improve the “fractured” way in which health data is collected by the provinces and territories and how difficult it can be to have it reported to the federal level, Hajdu told a Senate committee.
There is scepticism that these efforts will bring results given that the SARS outbreak in 2003, followed by the Swine Flu, H1N1 and MERS outbreaks, did not lead to the creation of an effective disease information, control and management system at any level.
Ontario’s recent progress in creating such a system is not a guarantee, says Roger Girard. As someone who participated in the creation of Panorama, he notes that the hard part of implementation of such a large information system, the system-wide changes, has not been done yet. He believes that public health in Canada as a whole needs to be planned top down and estimates that only about 20% of the work necessary for creation of a unified health information system has been completed: “20 years to get 20% done… so it could easily take 100 years to get 100% done? We need to change how we are doing this. First we need to design a public health system that is needed and then build an information system that supports that need”.
The question now is, will provinces and Canada as a whole, have this kind of system in time for the next virus? Gerard says: “During SARS we said that the half-life of the opportunity to make the needed system-wide changes was quite short. We started then too but obviously did not finish the job. In the middle of a crisis, like COVID, people can do amazing things but the longer it takes the more we lose our momentum. In 3-4 months, the vaccine will be passed around and the pandemic will start to fade away. The feds and some provinces will announce commissions to study this experience and make recommendations. Will this result in meaningful change? We did the same thing nearly 20 years ago and I can assure you that all of what we learned now was known then. I was optimistic then. I am a skeptic now”.