Research and Data Management – Chiefs of Ontario

Considerable work has taken place in First Nations community-based research and in the implementation of First Nations surveys. More data is available for First Nations communities now than ever before, such as the First Nations Regional Health Survey (FNRHS), the First Nations Early Childhood, Education and Employment Survey ( FNREEES) and matched Indian Registration System (IRS) data at CIEM. This data has great potential to help First Nations answer research questions to meet their needs at the community and regional levels. To facilitate the effective use of data, there is a need for a coordinated effort in First Nations health research and data management that will meet the collective needs of First Nations communities.

Over the past 20 years, there have been significant changes in First Nations health research and data management. Much of this change stems from First Nations peoples deciding their own path, challenging colonial assumptions and Eurocentric thinking.


It was a standard practice of Indian and Northern Affairs Canada to release the Indian Registration System database to researchers, government and provincial and federal government agencies intended to conduct research and monitoring in First Nations communities. This practice was carried out without informing or obtaining the consent of the First Nations to collect or disclose the data. In 1991, Cancer Care Ontario obtained a copy of the national Indian Registration System (IRS) database and published one of the first studies using the IRS to study cancer trends in the First Nations population. of Ontario. Even though First Nations in Ontario did not give consent or were unaware of the study, the study showed benefit in conducting such research using administrative data.

In 1996, the Assembly of First Nations passed a resolution banning Census Canada from entering First Nations communities. Prior to the 1996 Census, Canada entered communities without permission and collected data. In 1997, the Regional Health Survey (RHS) was piloted in four regions of the country. Ontario was one of four regions to pilot the RHS. At the same time, at a national HRH meeting, the principles of OCA (Ownership, Control and Access) were coined; a year later, the word possession was added to become OCAP. In 2014, PCAP® was filed and registered as First Nations Principles.


In Ontario, from 2009 to 2016, significant changes have occurred. The Ontario Chiefs General Assembly has passed a resolution to move forward with the development of a First Nations health surveillance system with cancer surveillance as a top priority. Chiefs of Ontario, in partnership with the Institute for Clinical Evaluative Sciences (ICES), First Nations and Inuit Health Branch (FNIHB) and Cancer Care Ontario (CCO) has submitted an Access and Transfer Request data from the Indian Registration System at ICES. In April 2012, Chiefs of Ontario signed a data governance agreement with ICES. This Agreement specifies how IRS data and other First Nations data identified by postal codes or geographically would be governed; a data sharing agreement has been signed between ICES and Indigenous Affairs Canada (formerly INAC) to share data with ICES; and a data sharing agreement was signed with ICES, CCO and COO to share anonymized IBS data with CCO to update First Nations cancer incidents to 2010.

In February 2016, Chiefs of Ontario, the Patient-Oriented Research Support Unit (OSSU) of the Ontario Strategy for Patient-Oriented Research, Institute and Center for Rural and Northern Health Research (CRaNHR ) organized the first First Nations Health Research Symposium. The goal was to identify First Nations health research priorities and launch a First Nations health research agenda for Ontario.

These signed agreements set the foundation for moving forward with the development of Ontario’s First Nations Health Research Agenda and First Nations health research and data management work. to the Chiefs of Ontario.

Ramon J. Espinoza