For First Nations peoples in Ontario, the pandemic unveiled a critical lack of health data in communities across the province, which resulted in a push for accurate data to help guide pandemic response.
“The pandemic really showed the gap in the data,” says Carmen Jones, the newly-appointed Director of Research and Data Management, Chiefs of Ontario, and previous Director of Health. “It opened a lot of areas where there is a gap in services, what services were not delivered, and a gap in data to help communities plan.”
In partnership with ICES through a data governance and data sharing agreement, Chiefs of Ontario now receives weekly data reports of COVID-19 testing and cases in First Nations people.
“I think on a higher level that COVID opened the door around data and research. For Chiefs of Ontario, because of the gap and the work we do, we began putting out a data report every week on First Nations COVID-19 testing data. We are further ahead than other provinces on data reporting which means we can report on First Nations people, in the community and outside community, who have COVID-19.”
First Nations centre of excellence
Carmen sees enormous opportunity for the future of First Nations communities in Ontario with recognition of the value of data and is working towards creating a centre of excellence in research and data management to serve the needs of the 133 communities across the province.
“We are still in baby stages as we are not yet a full research centre,” she says. “In our vision, we need the capacity to do it.”
Partners, including OSSU, ICES and the federal and provincial governments, are critical to providing funding as well as people and expertise.
The centre would provide expertise, tools and guidance to communities wanting to do research, and to researchers from across Ontario who might be interested in partnering to conduct First Nations research.
A key guiding principle is that all data must be owned and managed by First Nations communities, respecting the OCAP® principals: ownership, control and access, and possession.
Chiefs of Ontario is currently recruiting community members to join the First Nation Data Governance Committee to support research and ensure it will benefit communities and empower communities.
“Our work is also informing communities that they don’t always have to say yes when a researcher comes to do research. They have the right to say “no” but it’s harder to do if the researcher has money. We want to provide a checklist to assess a request to see if it meets community needs, to provide tools to empower.” Data sovereignty is the key for communities and First Nations as a collective.
Why is data so important?
“It’s important because how can our community plan if they don’t have the data? Where is it stored now? Much of it is in governments and universities. We need a secure, accessible place to house data and the ability to have sovereignty over our own data. As well, the data needs to be interpreted by First Nations people and used in a way that benefits the First Nations,” says Carmen.
“It will help communities to plan and evaluate the services that are in their areas as well as making sure the data is interpreted from our perspective
Read a recent Chiefs of Ontario health newsletter.