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TORONTO — A think tank that's been compiling data on COVID-19 in Canadian long-term care homes says it has to stop its work because provinces are no longer making enough information public about the spread of the virus in the sector. 

The project run by the National Institute on Ageing, based at Toronto Metropolitan University, launched in April 2020 and presents information about cases, outbreaks and deaths at long-term care homes in the form of a map, with a summary for each province and territory. 

It has provided data to organizations including the Public Health Agency of Canada and the Canadian Institute for Health Information and has contributed to national and international research on COVID-19 in a sector that's seen a large portion of Canada's deaths due to the virus. 

But provinces have been sharing less data on outbreaks and cases since the start of this year and information is being made publicly available with far less frequency than in the past. The situation has reached a point where it's now too difficult to keep the think tank's project alive, said Dr. Samir Sinha, director of health policy research at the institute.

"It’s not that we don't want to continue doing this, and that we wouldn't be interested in volunteering to do this," Sinha said in an interview. "It’s just impossible to continue doing this task in an accurate and reliable way."

The website for the Long-Term Care COVID-19 Tracker Project will remain available online with data gathered as of July 1, but work to update it is being paused.

The long-term care sector is still feeling the effects of COVID-19.

New outbreaks have been rapidly increasing in Ontario as the province contends with a seventh wave of infections – more than doubling week-over-week at the beginning of July. 

Without fulsome data, however, it's difficult to understand what's happening with COVID-19 in long-term care and how to best respond or plan for future outbreaks, Sinha said.

The National Institute on Ageing wants to see provinces and territories come to a common agreement on a consistent way to collect and publicly report data on long-term care and COVID-19, he said. 

The think tank would also like to see provinces, territories and the federal government choose an independent body that would be in charge of reporting the data. 

Sinha suggested giving the Canadian Institute for Health Information a mandate to collect information on COVID-19 in long-term care – something he said he was surprised to learn wasn’t already in place when representatives from CIHI reached out to him earlier in the pandemic with interest in his team's data collection work.

Lack of access to public data on outbreaks, cases and deaths makes it harder to assess what’s happening in the sector and makes governments less accountable to pressure from the public, Sinha argued. 

"I think politically, it's become more convenient to just not really report information, as opposed to continuing to remind people that we still have systemic and ongoing problems in protecting our long-term care spaces and their residents," he said.

Governments may be keeping track of data somewhere but it’s unclear whether the information is being looked at to inform policy responses, Sinha said, adding that it's difficult to retroactively collect information if records aren’t kept in the moment.

"The problem is, you can't go back," Sinha said.

This report by The Canadian Press was first published July 28, 2022. 

Holly McKenzie-Sutter, The Canadian Press