Métis doctor tapped to help analyze data gaps in counting Indigenous COVID-19 cases

Dr. Janet Smylie has dedicated much of her over two-decade career as a Métis physician and leader in the field of Indigenous health to shedding light on the injustices Indigenous people face in Canada's health-care system.

It's why Indigenous Services Canada will be working with her on short-term and long-term analysis of data on the novel coronavirus pandemic's impact on Indigenous communities, in an effort to address some of the data gaps that exist between Indigenous populations on and off reserve.

"It's a broken system," said Smylie.

"Even though there are all these jurisdictional divides in this health information system where it's way harder to identify our people with COVID in cities, now people are trying to work together and admit there's gaps. We need to bring things together."

Indigenous Services Canada (ISC) reports daily COVID-19 numbers including hospitalizations and death on its website but the data doesn't include First Nations who live off-reserve nor any data on the Métis Nation.

As of May 13, ISC was reporting 185 cases of COVID-19 on First Nations reserves, but Indigenous thinktank Yellowhead Institute says, based on its own research, there are at least 465 Indigenous COVID-19 cases across 42 communities.

Smylie said she has first-hand knowledge of Indigenous people living in Toronto who have contracted COVID-19, as well as four possible deaths.

"At ISC, we have a tiny information of First Nations on reserve but for all the First Nations, Métis and Inuit people living with COVID outside of First Nations reserve settings, that information right now is so lacking," said Dr. Tom Wong, ISC's chief medical officer of public health on Thursday.

"We would really want to have a comprehensive picture for us, for all of Canada, and certainly our Indigenous partners are saying they really want it and they are determined to try to find a way to better analyze the data and use the data for actions."

Issue 'ignored for so long'

Smylie is a public health researcher at the Centre of Urban Health Solutions at St. Michael's Hospital in Toronto where she currently holds a Canadian Institutes of Health Research Applied Public Health Research Chair in Indigenous Health Knowledge and Information.

"If there was a way to get that data quickly, people would. But it's been ignored for so long," said Smylie.

"Indigenous people living in cities often get excluded from federal policy and then the provinces are supposed to pick it up but then there's a hot potato back and forth."

That's what happened with the care needed by Jordan River Anderson from Norway House Cree Nation in Manitoba so he could live at home instead of in a hospital. Jordan died at age five in 2005 in hospital.

'Jordan's Principle of COVID'

That led to the House of Commons passing Jordan's Principle in 2007 as a commitment that First Nations children would get the products, services and support they need, when they need them. 

"We're having the Jordan's Principle of COVID," said Smylie. 

"It looks very silly within the context of an infectious respiratory disease that travels all around the world that the infrastructure to track that infection would be limited to the Indian Act of First Nations people living in First Nations communities."

She said the best approach means one that advances First Nations, Inuit and Mé​​​​​​tis sovereignty, and in this case data sovereignty.

"The best way to do it is by ourselves, for ourselves," said Smylie. 

It's a sentiment echoed by Marjolaine Siouï, executive director of the First Nations of Quebec and Labrador Health and Social Services Commission (FNQLHSSC). Quebec has a space on its form that allows people getting tested for COVID-19 to self-identify as First Nations or Inuit.

"It should be up the community to manage that data but they should have all the means to be able to do that. It's not something that Quebec or any other province should keep," said Siouï.

"If we want to monitor the health of our people, we need to have those numbers. Data is a strong element of planning for a community and they should have access to that."

Like Smylie, Siouï is aware of COVID-19 cases among Indigenous people in the province beyond the 32 cases reported on-reserve but said communities have faced challenges with the province on getting that information.

Quebec's Ministère de la Santé et des Services sociaux told CBC News that as of May 14, the number of confirmed cases of COVID-19 in the province who report having Aboriginal status is at 135.