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A First Nations-led diabetes report supports the development of effective health policies and programs


Diabetes is one of the leading chronic health conditions impacting First Nations peoples in Ontario, according to the First Nations Regional Health Survey. The First Nations have long recognized that individual and community health and well-being are linked to factors that are rooted in their historical, political, geographic, environmental, economic, cultural and social foundations. These factors contribute to inequity and marginalization, which are connected to high rates of diabetes, lack of access to care and poor diabetes-related outcomes.

For several years, Indigenous (First Nations, Inuit and Métis) communities in Ontario have collaborated with ICES to develop unique partnerships that include data governance and data sharing agreements, which have enabled Indigenous-driven analyses using ICES data.

ICES Research

The 2019 report First Nations and Diabetes in Ontario is an example of how meaningful collaboration using First Nations population data can be achieved. This work is in response to the calls to action contained in the 2015 report of the Truth and Reconciliation Commission of Canada. The report followed the First Nations’ Ownership, Control, Access and Possession (OCAP®) Principles that highlight the necessity of First Nations’ engagement and governance. The report, a first-of-its-kind, First Nations–specific study of diabetes in Ontario, found the prevalence of diabetes among First Nations people was 16.6% compared to 8.1% among other people in the province. It is the result of a collaborative project between the Chiefs of Ontario (COO), ICES, and other First Nations and academic partners.

Over three years, the project team worked with a six-member patient advisory group to better understand First Nations people’s experiences with diabetes and diabetes-related health services in Ontario. All members of the advisory group are living with type 2 diabetes or know of someone living with type 2 diabetes, and reside in Ontario First Nations communities.

The study was supported by a grant from the Ontario SPOR SUPPORT Unit, which is funded jointly by the Ontario Ministry of Health and the Canadian Institutes of Health Research. Honouring the principles established to observe First Nations data sovereignty and employing approaches from community-engaged participatory research, the report examines the prevalence and incidence of diabetes, as well as health outcomes and service utilization of people with diabetes.

How this work is having impact

Areas of impact: Makes health care better, Makes people healthier

  • This project was the first to be reviewed by the COO First Nations Data Governance Committee which informed application and review processes for future research requests.
  • The report is an example of relationship-building, illustrating how research teams and communities can work together to co-create evidence in a timely manner.
  • “Our Elders remind us to think seven generations ahead, which means these findings are particularly concerning to us. Our children are experiencing rising rates of diabetes, we need to look to their future and use this research to improve prevention for them now and for future generations and early support prior to complications of diabetes.”
    RoseAnne Archibald, Ontario Regional Chief, Chiefs of Ontario

  • The findings are being used to inform community diabetes programming.
  • The findings from the report were presented to the COO Health Coordination Unit and at the COO Health Forum attended by health directors from First Nations communities.
  • In 2019-2020, the research team published a series of 12 peer-reviewed papers, one for each of the report’s content areas, in the journals of the Canadian Medical Association.
  • The project has informed the analysis that Mamow Ahyamowen, a partnership of more than 70 First Nations communities, is conducting with ICES data and has increased awareness in the communities about the availability of ICES data.
  • The researchers are currently working on a People’s Report for the COO,
    which will integrate the findings of the quantitative report with a qualitative
    report; the report will be released in 2021.

Posted November 2020

Published in the 2019-20 Annual Report

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