Until recently, the diversity of Canada's First Nations, Inuit and Métis peoples has not been generally reflected in research, data collection or in health programming. This presents a critical challenge for Aboriginal public health and for the NCCAH role linking evidence, policy and practice. Research methodologies and survey approaches have been inconsistent, leading to fragmented data and incomplete information, while vital statistics continue to be challenged by a lack of accurate and complete identification of Aboriginal persons. Data gaps remain for various populations – such as off-reserve First Nations, Inuit and Métis people.
These issues are highlighted in our work at the NCCAH. This past year, we released our “Achieving Strength Through Numbers” fact sheet, by Dr. Janet Smylie, explaining the need for “disaggregated data,” that is specific to First Nations, Inuit and Metis population subsets, while our UNICEF CANADA joint 2009 report on the health of Canada's Aboriginal children brought the issue to broad public attention and included a call to action on the data gap.
As Smylie notes, the data challenge extends to the absence or inconsistency of First Nations, Inuit and Métis identifiers in vital registration systems, primary care, hospital administrative datasets, acute and chrnoic disease surveillance systems, and health surveys.
"As a result, First Nations, Inuit and Métis people are largely invisible in the majority of provincial and territorial health datasets," she states.
Health information is necessary to address the health needs and priorities of populations, assess health services and programs, and address inequities among population groups through policies and interventions. At the same time, there is a critical need for recognition that the right to First Nations, Inuit and Métis self-governance includes the right to self-governance of population health information. The NCCAH fact sheet includes suggestions to held guide Aboriginal health information workers, as well as a list of resources, including Aboriginal health surveys, prvoincial and territorial registry linkage initiatives, and Aboriginal and University health information partnerships.
The NCCAH is also helping develop and produce a national proposal facilitating access to and analysis of the rich vein of data contained in the First Nations Regional Health Survey (RHS). The RHS is the only First Nations-governed and controlled national health survey in Canada and collects information based on both Western and traditional understandings of health and well-being. The first survey took place in 1997 and involved First Nations and Inuit from across Canada at a time when reliable information was severely lacking. Data collection has since continued.
The NCCAH has participated in several meetings to date with a wide range of stakehoders including RHS, Indian and Northern Affairs Canada, Assembly of First Nations, Canadian Institutes of Health Research, Public Health Agency of Canada, Health Canada's First Nations and Inuit Health Branch, and social science researchers. This project is building on the NCCAH Second Forum on Aboriginal Social Determinants of Health by exploring how to map the evidentiary pathways between social determinants and health outcomes.