A closer look at our decision to pause the LTC COVID-19 Tracker

Canada’s LTC Homes are in their seventh wave of COVID-19 outbreaks, but we can no longer accurately track them

Last week, the National Institute on Ageing announced that we had made the difficult decision to pause our innovative NIA Long-Term Care COVID-19 Tracker Project, even though Canada and its long-term care (LTC) and retirement homes are now in their seventh wave of the pandemic.

We are pausing this project not because the threat to LTC and retirement homes has abated — in fact, new outbreaks in Ontario LTC homes doubled in the first week of July. It’s because many of Canada’s provincial and territorial governments and public health authorities are no longer providing enough consistent, accurate and timely data on COVID-19 in LTC and retirement homes. Without this, we can no longer ensure our tracker remains a reliable source of information.

We wanted to share a little bit more about the LTC Tracker and what led to our decision to hit pause. In March 2020, as COVID-19 began to intensify around the world, experts and front-line workers sounded the alarm about its potential impact on older adults. The NIA reacted quickly by standing up a Long-Term Care COVID-19 Tracker Open Data Working Group to develop a system that could track outbreaks in LTC and retirement homes in every province and territory, including the number of cases and deaths among staff and residents. With the launch of its web-based Long-Term Care COVID-19 Tracker in April 2020, the NIA became the first organization to track COVID-19 outbreaks, resident and staff cases and deaths in LTC and retirement homes across Canada in a consistent, reliable and timely way.

The NIA’s publicly accessible online LTC COVID-19 tracking map was built in collaboration with Empower Health, and was created to compile the best available data from multiple sources. These included public health units, government reports and dashboards, news media, public statements from the homes themselves, and sometimes communications from individual homes shared with residents, families or staff.

From the project’s early days in March 2020, there have been challenges to compiling this data in a consistent way, given the number of possible data sources. Not all of Canada’s provinces or territories publicly or otherwise readily shared their data on LTC and retirement home resident and staff cases or deaths. Nevertheless, the NIA worked to develop data-sharing agreements with many of them, and supplemented the official figures with verifiable information from the news media, LTC homes’ websites and other open-source data. At one point in the first wave, it took seven researchers and volunteers at the NIA and Sinai Health’s Healthy Ageing and Geriatrics Program working full-time to gather and process this data.

“To date, more than 107,000 residents and 58,000 staff have been infected by COVID-19 within these settings and more than 17,000 residents and 30 staff have died, accounting for 43 per cent of Canada’s overall COVID-19 deaths.”

The NIA, in turn, has readily provided this data to other institutions to help inform their reports and policy decisions. The NIA’s Long-Term Care COVID-19 Tracker Open Data Working Group became the principal supplier of comprehensive and accurate data on COVID-19 in LTC and retirement homes to the Canadian Institute for Health Information, and routinely provided data to the Public Health Agency of Canada, the LTC COVID international research consortium based at the London School of Economics and Political Science, and other agencies, institutes, researchers and journalists looking to better understand what was happening across LTC and retirement home settings. Many stakeholders expressed to us their relief at having this data made accessible to them. We were also proud to see that our data formed the basis of numerous media articles, as well as several key reports and academic publications that were both led by and supported by NIA researchers.

The NIA’s LTC COVID-19 Tracker helped fill gaps in our collective understanding of the pandemic’s effects on LTC and retirement homes. We learned the full extent to which these settings were affected by large numbers of COVID-19 outbreaks, leading to many cases among both residents and staff, as well as a disproportionate number of deaths. To date, more than 107,000 residents and 58,000 staff have been infected by COVID-19 within these settings and more than 17,000 residents and 30 staff have died, accounting for 43 per cent of Canada’s overall COVID-19 deaths.

While vaccinations did lead to fewer serious or fatal cases of COVID-19 in residents, these settings have remained affected by both outbreaks and visitor restrictions that continued through the additional waves of the pandemic. These residents have suffered disproportionately not just from COVID-19 infections and deaths, but also from social isolation and changes to their care, including reductions in staffing and limits on visitors and essential care partners. 

In addition to allowing us to monitor what was happening at a regional or provincial/territorial level, the LTC COVID-19 Tracker also helped uncover differences between provinces or territories that may have been related to their different approaches to managing various stages of the pandemic. The NIA’s academic independence also allowed us to remain an objective source of information, even as data collection efforts became increasingly politicized over the course of the pandemic. 

However, since the beginning of 2022, the majority of Canada’s provinces and territories have been sharing less and less data about outbreaks and cases within LTC and retirement homes. Even as case numbers have risen again across the country, it has become increasingly difficult to source timely, accurate and comparable information, and without that, we no longer feel confident that we can provide the quality of information expected from us.

“A tool like this is only as useful as the data it’s based on, and without consistent and accurate data, we can no longer guarantee a consistent and accurate LTC COVID-19 Tracker,” said Dr. Samir Sinha, Director of Health Policy Research for the NIA.

Data collected by the LTC COVID-19 Tracker Open Data Working Group as of July 1, 2022, will be archived and remain available for future use on the LTC COVID-19 Tracker website, ltc-covid19-tracker.ca.

Even though we have had to end our weekly data collection for the NIA’s LTC COVID-19 Tracker, we are hopeful that the lessons we’ve learned can be useful for other researchers and organizations taking on this kind of data collection work in the future. We now have a framework and system that has shown how this work can be done and why it is needed. We will also be able to resume data collection and sharing quickly the next time there is a health crisis that requires this kind of effort.

The NIA continues to recommend that Canada’s provincial, territorial and federal governments continue collecting and releasing data on COVID-19 cases and deaths in Canada’s LTC and retirement homes. This data plays an important role in both understanding past actions and informing future actions to better support those living and working in these settings. In order to do so effectively, Canada’s provinces and territories should come to an agreement on common data collection and reporting definitions and standards, along with a mechanism to regularly report this data to a central organization such as CIHI with a mandate to organize and share the data, as it currently does with other LTC data.

Unless we find a path forward together, we will likely lose a valuable opportunity to further understand how COVID-19 continues to affect Canada’s LTC and retirement homes.

Finally, we would like to thank the Slaight Family Foundation, La Fondation Emmanuelle Gattuso, the Naraine Global Fund and our other donors, sponsors and supporters who allowed this work to be launched quickly and sustained over the past two years. Without their support our ability to respond quickly and effectively would have never been possible in the first place.

We would also like to thank all the volunteer and staff members of the NIA Long-Term Care COVID-19 Tracker Open Data Working Group who worked tirelessly to collect the data that is presented in the tracker. We would also especially to recognize the efforts of NIA Senior Policy Advisor Julie Dunning, who expertly co-ordinated this entire project for the past two years.

To learn more about the LTC COVID-19 Tracker, read the full report.