Extensive 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 Nation Regional Health Survey (FNRHS), the First Nations Early Childhood, Education and Employment Survey (FNREEES), and the Indian Registry System (IRS) matched data at ICES. These data have vast potential to assist First Nations in answering research questions to address their needs at both community and regional levels. To facilitate the effective use of the data, there is a need to have a coordinated effort in First Nation 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 has stemmed from First Nations people deciding their own ways forward that challenges colonial assumptions and Eurocentric thinking.
It was a common practice of Indian and Northern Affairs Canada to release the Indian Registry System data base to researchers, government and scheduled agencies of provincial and federal governments to conduct research and surveillance in First Nations communities. This practice was done without informing or obtaining consent from First Nations to collect or release the data. In 1991, Cancer Care Ontario obtained a copy of the national Indian Registry System (IRS) data base and released one of the first studies using the IRS to study the patterns of cancer in Ontario’s First Nations population. Even though, Ontario First Nations did not give consent or were aware of the study, it did show a benefit in conducting such research using administrative data.
In 1996, Assembly of First Nations passed a resolution banning Census Canada from entering First Nations communities. Previous to 1996 Census Canada entered into 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 the four regions to pilot the RHS. At the same time at a RHS National meeting the principles of OCA (Ownership, Control and Access) was coined; a year later the word possession was added to become OCAP. In 2014, OCAP® was trademarked and registered as First Nations principles.
In Ontario from 2009 to 2016 significant changes happened. The All Ontario Chiefs in Assembly passed a resolution to move forward in developing a First Nations Health Surveillance system with the first priority, Cancer Surveillance. Chiefs of Ontario, in partnership, with the Institute for Clinical Evaluative Sciences (ICES), First Nations Inuit Health Branch (FNIHB) and Cancer Care Ontario (CCO) submitted an application to access and transfer the Indian registry system data to ICES. In April 2012, Chiefs of Ontario signed a data governance agreement with ICES. This Agreement spells out how the IRS data and other First Nations data identified by postal codes or geographically would be governed; a data sharing agreement was signed between ICES and Aboriginal Affairs Canada (formerly INAC) to release the data to ICES; and a data sharing agreement was signed with ICES, CCO and COO to release de-identified IRS data to CCO to update the First Nations Cancer Incidents up to 2010.
In February 2016, Chiefs of Ontario along with the Ontario Strategy for Patient Oriented Research Support Unit (OSSU), the Institute and the Centre for Rural and Northern Health Research (CRaNHR) hosted the first First Nations Health Research Symposium. The goal was to identify First Nations priorities in health research and to set the beginning of a First Nations Health Research Agenda for Ontario.
These agreements that have been signed set the foundation in moving forward with the development of the Ontario First Nations Health Research Agenda and the First Nations Health Research and Data Management work at the Chiefs of Ontario.