Data gaps exist on COVID-19 cases in Indigenous communities, says research fellow

Leaders and academics have concerns the data being collected and reported on COVID-19 cases in Indigenous communities isn't presenting a full picture.

The number of cases of COVID-19 in First Nations reserves continues to rise this week, according to data reported by Indigenous Services Canada.

The cumulative number ISC reported as of May 5 was 161 confirmed positive cases on reserve, broken down by province:

• British Columbia: 37
• Alberta: 26
• Saskatchewan: 26
• Ontario: 41
• Quebec: 31

ISC's data includes two deaths and 17 hospitalizations, but that information only became available online after CBC News asked why it wasn't. The ISC website does not include the number of recovered cases, the number or names of First Nations communities affected, or account for First Nations members who live off-reserve, including in long-term care facilities.

It's why Courtney Skye, a research fellow at Yellowhead Institute, has been scanning newspapers, local media reports, Facebook groups, and First Nation government websites for additional COVID-19 data.

She said community reports are outpacing the data that is being reported by ISC, including the number of Indigenous people dying of COVID-19 who are not being counted by ISC because they live off-reserve. On Tuesday, an elder who was in a rehabilitation centre in Montreal was reported as the first known Cree person from Quebec to die from COVID-19.

"Our data needs are not being met," said Skye, who is from Six Nations of the Grand River near Brantford, Ont.

"There's all these ways in which lived realities of First Nations are not captured and represented fairly. Clearly, First Nations have less access to health care, reporting, transparency. It's frustration because you want to see people treated fairly, and considered equally."

Indigenous Services Canada spokesperson Rola Tfaili said the department monitors and tracks multiple sources of information, while protecting patient privacy and confidentiality, for reporting on new cases of COVID-19, including those among First Nations people on reserve.

"Provinces and territories don't require individuals to self-identify when testing at their provincial or territorial test centres," said Tfaili in an email to CBC News.

"While ISC tracks the sources of information available, all test samples are analyzed by the provincial health system laboratories and the authority for publicly sharing information on the confirmed cases of COVID-19 for individuals living off reserve rests with the provinces and territories, as well as the Public Health Agency of Canada."

Concerns about confidentiality have been echoed by some First Nations leaders, including the First Nations Health Authority in British Columbia, in why they are not disclosing the locations of COVID-19 cases.

But for Skye, the lack of data being made public is what fosters stigma.

"If people aren't empowered with actual reliable data, stigma is a consequence," she said.

"People feel like they have this vigilante mentality because their systems of structures are failing them at providing them information."

ISC said efforts are being made to make more data available online.

Skye said access to more information, whether reported by ISC or mainstream media, will improve basic decision-making.

"One of the things that's hardest for average people in a community is to have the information available to them so they can accurately assess their own situation," said Skye.

"People and families want to be able to assess their own risk or meet their own needs. If people aren't aware how many cases locally are happening, they're not going to know whether or not they should go shopping or going out to do all of these things to get meals.

"If you're not aware of cases in your community, you're just having this spectre of fear, as opposed to knowledge."

AFN launches task force

Manitoba Regional Chief Kevin Hart said First Nations need to be involved in "every step of the way" of the pandemic response, and that includes data collection and data sharing for informed decision-making.

Hart is the co-chair of the Assembly of First Nations' (AFN) newly established national task force on COVID-19. The goal is to help First Nations receive accurate information, analysis and recommendations throughout the pandemic.

"Data has always been something that has been sought after. We as First Nations are at the federal government's mercy when it comes to data collection," said Hart.

He said leadership needs proper data to be able to advise their citizens when it comes to the different states of emergencies that are being enacted across the country.

He also holds the emergency management portfolio for AFN, and said he's advocating for both on and off-reserve members.

"Here in Manitoba, we have one of the highest urban [Indigenous] populations in Canada — upwards of 100,000 Indigenous people including 75,000 First Nations people.

"There's a lot of people that we see are falling through the cracks. We want to ensure everyone out there are properly being resourced."