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In Ojibwe, Oji-Cree, and Cree “Mamow Ahyamowen” means everyone’s voices or working together. We felt that the idea of everyone’s voices is a good description of how epidemiology works. Epidemiology takes many different individual pieces of data and analyzes them so that they speak with one voice. The more voices we have talking together the louder and stronger our voices become.
Truth and Reconciliation Call to Action number 19 highlights the inadequate measurement of Indigenous health across Canada and its ties to health equity. As a First Nations epidemiology partnership Mamow Ahyamowen is uniquely positioned to contribute to achieving Call to Action number 19 which specifically states:
“We call upon the federal government, in consultation with Aboriginal peoples, to establish measurable goals to identify and close the gaps in health outcomes between Aboriginal and non-Aboriginal communities, and to publish annual progress reports and assess long-term trends. Such efforts would focus on indicators such as: infant mortality, maternal health, suicide, mental health, addictions, life expectancy, birth rates, infant and child health issues, chronic diseases, illness and injury incidence, and the availability of appropriate health services.”
Ownership, Control, Access and Possession (OCAP®) is a set of principles developed by the First Nations Information Governance Council. They set out an approach for data collection, protection, use, and distribution that jointly create an ethical basis for research and other data initiatives. OCAP® is a registered trademark of the First Nations Information Governance Centre (FNIGC).
First Nations often do not possess much of the health information for their community members. Community members often receive health services from organizations outside the community. This means that the data associated with those health services is collected through Provincial and Federal systems. The organizations that hold First Nations data are governed by Federal and Provincial laws which do not currently allow the organizations to share individual patient data with communities. By working with ICES, Mamow Ahyamowen is able to facilitate a process where communities are able to receive their health data in a way that enables program management while protecting individual privacy. This process takes important steps towards asserting and achieving First Nations ownership, control and access to First Nations data while recognizing that First Nations possession of health data still faces legal and policy challenges.