The Final Word – The NIA’s Long-Term Care COVID Tracker pause, and the importance of reliable data

On July 28, the National Institute on Ageing (NIA) based out of Toronto Metropolitan University announced they would be shutting down their Long-Term Care COVID-19 Tracker Project. Their data was relied on by the media, governments and researchers for more than two years—data that furthered the understanding of COVID-19 in long-term care settings. 

The NIA had been recording deaths, infections and outbreaks in long-term care homes since the early days of the pandemic. They were the only organization to keep comprehensive data from every province in the country. 

Before the pandemic, the NIA had conducted a study that found Canada’s long-term care homes to be seriously understaffed and underfunded, conditions that made them particularly vulnerable to outbreaks. According to Dr. Samir Sinha, the director of health policy research for the NIA, the institute was concerned about COVID-19 as soon as they started seeing outbreaks in Italy and Spain. 

“As we started seeing homes popping up across the country with reports of outbreaks, we became very concerned,” said Sinha. “That actually led to the birth of our project”

A big challenge, says Sinha, was finding reliable data for COVID-19 numbers across the country. Some provinces and territories were keeping track, but others were not. In those cases, the NIA had to look to local public health units or, as a worse case scenario, media reports.

“It became a real scavenger hunt to try and find comparable data, especially when there was no comprehensive or agreed upon way in which provinces and territories are reporting.” It was not easy work, says Sinha, and there were huge amounts of data that had to be sifted through. But Sinha says the impacts have been clear. 

“We were really proud about the impact that the tracker had because very quickly our key partners were media partners. We started working quite closely with a number of major news outlets who not only were relying on us for data, but were also using their resources and their sources to actually improve our data,” said Sinha.  

But during the omicron wave early this year, the NIA found it increasingly difficult to get the data they needed. Sihna says provincial governments were overwhelmed, and told the NIA that they would have to stop reporting their COVID-19 data as often or, in some cases, stop reporting completely. 

 “We have some provinces where we’re just not confident that we have a good sense of what the overall counts are. In other provinces, we can still be fairly confident that we’re reporting up to date.”

The declining numbers lead to the think tank’s ultimate decision to cease their tracking, as they were no longer confident the data they were publishing was reliable.

“We’re now just unable to really get consistent, reliable data,” says Sinha. “So we had to make the difficult decision to pause.”

Based on the lastest NIA data, collected in July, it’s clear that people living in long-term care are still being disproportionately affected by the pandemic. Sinha says it’s an important reminder that this is an especially vulnerable population. 

Sinha is disappointed that the NIA tracker is, at least for now, unable to continue. He worries about the potential impacts that a lack of data could have on our ability to understand of COVID-19. 

“When you lose an opportunity like this, to collect this sort of data, you lose an opportunity to document exactly what’s happening so that you can understand in real time or retrospectively understand what happened, to better appreciate what you need to do moving ahead.”

“I think this is where the value of trackers like this become really well understood,” said Sinha. “What saddens me is that right now, we are quickly losing our opportunity to really have a good sense of what’s happening in these settings. And once you lose that, you may not get it back.