National data system would benefit Inuit, other racialized groups

It may surprise you to learn that almost six months since Canada began tracking the impact of the COVID-19 pandemic, we cannot report with any degree of accuracy the number of Inuit who have been tested for, diagnosed with, recovered from, or indeed died from the disease.

Why? Our national public health surveillance and data systems simply do not collect this information consistently for Inuit, or any Indigenous or racialized community.

The government of Canada is obligated to make available national communicable disease data to address public health concerns. But there is little co-ordination among federal, provincial and territorial governments to deliver the comprehensive data necessary to meaningfully inform national policy and program development. This affects not just marginalized and vulnerable populations, such as Inuit, but all Canadians.

It is not a new issue. Inuit have struggled to access what should be readily available national health data for Inuit living within and outside of Inuit land claims jurisdictions for decades. Nor is it an issue specific to the current pandemic.

There have been calls for immediate action to create and maintain a national communicable disease surveillance system following evaluations of the handling of SARS in 2003, listeria in 2008, and the H1N1 pandemic in 2009.

A national data system is fundamental to informing decision-makers on how best to implement often life-saving public health measures to protect the health and well-being of Canadians. Provinces and territories are responsible for collecting the data, but reporting to the federal government is not mandatory.

There are inconsistencies in what is collected across jurisdictions, and huge gaps in the collection of data related to Indigenous identifiers. Complicating matters, the definition of what is considered to be a case of COVID-19 also varies across jurisdictions.

The federal government has a clear role to play in addressing these inconsistencies.

The creation of provincial and territorial data-sharing protocols would ensure that disaggregated, distinctionsbased data is captured in a comparable way across Canada, which would in turn lead to more informed decision-making across all jurisdictions.

Failure to collect this data renders Inuit, Indigenous people, Black communities and all persons of colour essentially invisible, and robs us of the opportunity to make the critical decisions to decrease our risk profile. In the context of COVID-19, where it is especially important to identify and protect the most vulnerable Canadians, timely, accurate and reliable data are among the few tools that could allow us to assert selfdetermination and leverage support for our communities.

A critical and immediate next step in the government of Canada’s response to COVID-19 must be to address the lack of access to, and prompt reporting of, distinctions-based data across all jurisdictions. Federal, provincial and territorial governments need to immediately resolve internal issues related to data ownership and focus on their respective accountability and responsibility to Canadians.

In the long term, when we return to times of normalcy, all reportable communicable diseases must be addressed in the same manner. Strengthened partnerships between all levels of government, inclusive of Inuit representational organizations, would be a significant legacy of the COVID-19 pandemic, ensuring that we emerge stronger, and better able to face the next one.

Failure to collect this health data renders Inuit, Indigenous people, Black communities and all persons of colour essentially invisible