Last week, one of the pioneering websites to keep track of the flood of government data generated by the COVID-19 pandemic announced that it was pausing its work, because the flood has turned into a trickle.
The National Institute on Ageing, based at Toronto Metropolitan University, started reporting case counts, outbreaks and deaths in more than 6,000 long-term care homes across Canada as of April, 2020.
But its Long-Term Care COVID-19 Tracker is now in limbo, because too many provinces are sharing less data, and reporting it less frequently, Dr. Samir Sinha, director of health policy research at the institute, told the CBC.
It may not seem like a big story, but it’s a telling one.
The NIA website was one of the first places to alert Canadians to the frightening degree to which LTC facilities – particularly those in Ontario and Quebec – had become pandemic slaughterhouses. By May of 2020, it was reporting that 82 per cent of the COVID-19-related deaths in Canada involved residents of nursing homes and seniors residences.
It was timely and powerful information, much of it gleaned from public-health units and government reports. It provided a blunt assessment of the failings of LTC providers, and was a vivid demonstration of how the novel coronavirus preyed on vulnerable populations in congregate settings.
Media reports based on the NIA tracker and others like it spurred governments to respond to the tragedy in LTC facilities, and to ensure that the first vaccines, when they became available in late 2020, were given to LTC residents and other highly vulnerable populations.
Such is the power of data, especially data that are shared publicly. And now the NIA website is on pause, because the data tap has been turned off.
“It’s not that we don’t want to continue doing this,” Dr. Sinha said. “It’s just impossible to continue doing this task in an accurate and reliable way.”
What’s true about the NIA is also true for governments. Without up-to-date data that the public can see, it is impossible to know whether they are responding to the pandemic in an accurate and reliable way.
And yet that is the path governments have chosen this summer, even as much of the country is living through yet another wave of the pandemic, with yet another COVID-19 variant.
These days, people living in most provinces get weekly updates on hospitalizations and deaths, usually on Thursdays. (Quebec is an exception; it still provides daily counts.)
Because so little testing is being done, provinces rely on wastewater signals – the amount of the COVID-19 virus in sewage – for a relative measure of how widespread infections are from week to week.
It may seem to the public as though this reduction in data output makes sense, given that almost all mask and vaccine mandates have been lifted. Why bother counting, when every signal coming from government tells us that the worst is behind us?
But there have been more COVID-related deaths in Canada so far this year than there were at the same time last year – 12,731 versus 11,251, according to Worldometer. Weekly data for Ottawa released last Thursday show the capital has already had more COVID-19 deaths in 2022 than 2021.
There is still so much we don’t know about the evolution of COVID-19, and where it is headed. Many in public health fear there could be another major wave in the fall. And yet all along the watchtower, provincial governments are disarming themselves, and public watchdogs such as the NIA, by cutting back on data sharing, and collecting less data to begin with.
That risks making it more difficult to know what governments know, and whether their decisions are based on sound judgment. The lack of regular shared data disempowers the public, and lessens government accountability.
Dr. Sinha is right when he says the provinces and Ottawa should agree to collect data in a consistent manner and share it with an independent body, such as the Canadian Institute for Health Information, which would then make it public.
When it comes to disease, you can’t fight what you can’t see, and you can’t see what you’re not measuring. Canada has had one of the world’s best performances against COVID-19, in part because data made it impossible to ignore our early failures. Don’t turn out the lights.
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