Three years after COVID-19 began to make its way around the world, Canada is still largely relying on other countries to discern new health threats.

Experts say this country’s lack of a comprehensive, national tool to report health-care data could prevent authorities in this country from taking the kind of early action that can save lives.

“We all remain blind to so many of the emerging trends,” says Dr. Srinivas Murthy, a clinical associate professor in the department of pediatrics at the University of British Columbia, speaking of the surge in RSV, Strep A and mpox, formerly referred to as monkeypox — all of which were reported earlier in other countries or by global health organizations.

In the past month, at least three children in Canada have died with Strep A infections, with the World Health Organization publishing an update on the increased incidence of scarlet fever and invasive group A streptococcal infections in at least five countries.

Last week, Montreal’s public health authority reported the city has seen four cases in children under two years of age since mid-November, with two children dying after infection. During the same period in 2017 to 2021, zero to one case of invasive infections among children in Montreal were reported.

In the Montreal release, the WHO was cited, as were the “international epidemiological situation and the uncertainty regarding respiratory virus season” as reasons for people to remain vigilant.

What all jurisdictions in Canada have largely done is use data from other countries to define clinical and public health responses here, says Murthy, who also works with the Canadian Pediatric Intensive Care Consortium, an organization that includes all 17 pediatric intensive care units in Canada, shares clinical and research knowledge and advocates for children’s health.

Amid a busy respiratory season, and the re-emergence of RSV and Strep A, experts are calling for the government to finally implement a comprehensive reporting tool, saying it’s years late and would save lives, and would allow Canada to make its own health decisions instead of looking to the United Kingdom and the United States for guidance.

Data collection is an issue Murthy has brought to the Canadian government directly, with the consortium calling on Ottawa to establish sustainable pediatric hospitalized-patient data infrastructure across Canada to be used by policymakers, researchers, clinicians, public health and the public. A centralized data system would also make it easier to spot emerging health-care trends, Murthy said.

“Many comparable countries have established national and exhaustive continuous data collection to monitor and track the burden of pediatric critical illness in a country,” the consortium’s letter to the standing committee on health reads.

“The lack of a similar centralized data infrastructure in Canada for pediatric critical illness has been a crucial gap in our ability to provide the best possible care for these children. Such gaps became painfully visible during the COVID-19 pandemic, but had been previously identified many years ago.”

Those cited countries include the U.K., Australia, Portugal and the Netherlands, which have central repositories of clinical data that offer almost real-time data collection.

But it’s not just pediatric health care that is seeing serious gaps in national data collection.

Canada’s auditor general Karen Hogan, in a report about vaccines to Parliament early this month, wrote the federal government didn’t have regulations or finalized agreements with provinces and territories to “clearly outline” what health surveillance information to share and how to share it during the pandemic.

Hogan’s report, while about COVID-19 vaccine data sharing, outlined gaps between jurisdictions, calling for the Public Health Agency of Canada, in collaboration with Health Canada and the provinces and territories, to remove barriers to better share vaccine information and provide surveillance data, “including case-level details as needed.”

In an emailed statement from Health Canada, a spokesperson echoed some of Hogan’s words, writing such information is essential for public health officials to “provide their best advice in public health emergencies and inform investments in health care systems.” Such data is shared now, but there are gaps, they added.

To address the gaps, Canada has been working to develop the Pan-Canadian Health Data Strategy (PCHDS), which focuses on modernizing health data collection, sharing and interoperability, streamlining and updating approaches to privacy and access, and clarifying accountability and health data governance.

Still, the proposed strategy does not envision or create a national data collection program — similar to what the U.K. has — or technology system, and instead will facilitate the creation of a new, unrestricted sharable and usable environment to harness health data. Part of this is outlined in talks between provinces and the federal government surrounding the Canada Health Transfer.

The federal government and the premiers have been in a deadlock in discussions surrounding the federal government’s share of funding for health care, with both sides appearing entrenched after negotiations broke down during meetings in Vancouver last month. The provinces say they want to see an actual proposal of what the deal will look like, including dollar figures, while the federal government added strings to the deal. Recently, the premiers demanded a meeting with Prime Minister Justin Trudeau early next year.

While the project and funding deal waits in limbo, “We have an incomplete story,” says Lauren Ettin, the executive director of Kids Health Alliance, a network of partners working to create a high-quality, consistent and co-ordinated approach to kids’ health care.

On a local level, parts of the health-care system “don’t speak to each other,” meaning you’re getting siloed care instead of a full health-care picture — say, going to a walk-in clinic for care and that information not then being transferred to your family doctor. And without a family doctor, the problem is even worse.

On a national level, “what we need is comprehensive data that’s collected once, that’s of high quality and that’s used consistently,” Ettin said. And the way provinces and the federal government banded together to share data about COVID-19 shows this can be done to improve health outcomes and inform decisions.

Referencing an oft-quoted line, Ettin said “what gets measured gets managed.”

“Where you’re putting your focus and what you’re collecting is a proxy for what the priorities are.”

With files from Raisa Patel

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