For families and friends with loved ones in an Ontario long-term-care or retirement home, there is no public database with up-to-date information about COVID-19 outbreaks and deaths in these facilities.

Every day, Public Health Ontario publishes some information on confirmed cases and deaths in long-term-care home outbreaks, but the Star has found this data vastly under-reports the true number of people dying in these settings, as well as in retirement homes.

Provincial health officials began this week to quote in their daily press briefings more up-to-date death numbers collected by the Ministry of Long-Term Care. But this data has limitations too; it only includes deaths at long-term care homes and not retirement homes, it doesn’t tell where the deaths are occurring, and it doesn’t tell you which homes are experiencing outbreaks.

“Families are frantic. They are desperately trying to get reliable, accurate and up-to-date information about what’s happening in both long-term care and retirement homes,” said Laura Tamblyn Watts, CEO of the national seniors advocacy group CanAge. “There has been no one easy, consistent place that they can go to get that information.”

So, in the absence of up-to-date information from an official agency, the Star built its own database. Readers can now look up outbreaks and deaths in long-term care facilities, retirement homes, shelters and hospitals, and find this data on an interactive map that will be updated daily.

As of Wednesday night, the Star can report that at least 510 people have died with COVID-19 in a total of 283 reported outbreaks in Ontario. Of these deaths, we’ve counted 63 fatal cases in retirement homes and at least 444 in a long-term-care home.

That last total makes up a clear majority of all reported COVID-19 deaths in the province, although the exact proportion is not clear because the province’s latest official tally of total deaths, put out daily, is missing more than 100 of these cases.

At Queen’s Park Wednesday, Long-Term-Care Minister Merrilee Fullerton acknowledged that there has been confusion over the numbers, and said the province is “making sure that our homes understand the importance of accepting the support when they need the support.”

“We’re making sure those communication channels are open,” said Fullerton, adding that consistent and timely numbers are “very important.”

Ontario Public Health’s daily summary is based on data reported by the regional public health units at 4 p.m. the previous day into the province’s database, known as the “integrated Public Health Information System.” While provincial health officials have cautioned over the past several weeks that Ontario’s official numbers may be out of date, “it raises the question of how and why that was allowed to happen,” said Patricia Spindel, president of Spindel and Associates, a health and social services consulting firm.

“It’s very confusing to the public,” said Spindel, former president of the non-profit Concerned Friends of Ontario Citizens in Care Facilities and former associate dean of health sciences at Humber College. “Families need to understand just how much jeopardy their relatives are in and whether they should be taking crisis action, like deciding whether they want to obtain a lawyer so that they can remove someone from a home...without adequate information, they can’t make informed crucial decisions like that.”

“It certainly raises the question of who is in charge of the coordination of this information provincially,” she added.

If you think we’ve missed information here, please email us at stardata@thestar.ca and we’d be happy to look into it.