First Nations Data Sovereignty in action: Creation of the largest First Nations health research study cohort in Canada



Jennifer Walker is a health services researcher and epidemiologist. She has Indigenous (Haudenosaunee) family roots and is a member of the Six Nations of the Grand River. She has a PhD in Community Health Sciences (Epidemiology specialization) from the University of Calgary. Her work focuses on Indigenous use of Indigenous health and health services data across the life course, with a focus on older adults. She collaborates closely with Indigenous organizations and communities to address health information needs.

Jennifer was awarded a Canada Research Chair in Indigenous Health at Laurentian University in the School of Rural and Northern Health. She is a Core Scientist at the Institute for Clinical Evaluative Sciences. She also holds appointments at the Centre for Rural and Northern Health Research, Health Sciences North Research Institute and the Dalla Lana School of Public Health at the University of Toronto.

Carmen R. Jones, Research Manager, Chiefs of Ontario. Carmen Jones is an Ojibway woman and a member of the Serpent River First Nation in Ontario, Canada. She is the Research Manager for the Chiefs of Ontario. She is responsible for overseeing and managing the team that implements the First Nations Regional Health Survey and the First Nation Early Childhood, Education and Employment Survey.  She is the Chair of the First Nation Data Governance Committee which is responsible for reviewing applications from researchers requesting access to use First Nation data.  She is the lead at the Chiefs of Ontario in the implementation of the First Nations Data Governance Agreement with the Institute for Clinical Evaluative Sciences.  She is co-investigator on various projects such as the First Nations Cancer Surveillance, Reducing the Burden of Diabetes on First Nations People in Ontario, Unlocking Health Information for Older First Nations Populations, and First Nations Chronic Disease Surveillance.


Conducting population-level research in Canada to improve the health of First Nations populations requires innovative and collaborative approaches to community involvement and data governance. The First Nations-developed principles of OCAP(R) (Ownership, Control, Access and Possession) are the means by which First Nations assert their sovereignty to govern data that identify their communities and members.

In Ontario, Canada’s most populous province, the Chiefs of Ontario and the Institute for Clinical Evaluative Sciences (ICES) entered into a Data Governance Agreement in 2012 to advance the OCAP(R) principles in research and analysis using existing health and databases held at ICES.

The Data Governance Agreement has facilitated the linkage of the federal Indian Registry System data file to ICES health administrative databases, allowing for the matching of First Nations individuals to their health and demographic records. This data linkage project has resulted in the creation of the largest First Nations health research study cohort in Canada and is being used by First Nations for disease surveillance and evaluation of health care, under the tenets of the Data Governance Agreement.

This presentation will describe the development of the ICES-Chiefs of Ontario partnership within the historical context of First Nations health and health research in Canada. The data governance and data sharing arrangements that protect the interests of First Nations communities will be discussed, along with plans to use the linked data that support efforts to improve the health of First Nations peoples in Ontario. This presentation will provide an illustrative example to researchers seeking to work in a mutually beneficial and collaborative manner with Indigenous populations to enable timely and relevant health research.