Frequently Asked Questions
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In Ojibwe, Oji-Cree, and Cree “Mamow Ahyamowen” means everyone’s voices or working together. These concepts speak to the way we work with data. This process, known as Epidemiology, takes many individual pieces of data and analyzes them so that they speak with one voice. The more voices we have speaking together, the louder and stronger they become.
Does Mamow Ahyamowen follow OCAP® in its work?
OCAP® stands for Ownership, Control, Access and Possession, a set of principles developed by the First Nations Information Governance Centre. They set out an approach for data collection, protection, use, and sharing that serve as a foundation for ethical research and data initiatives.
We recognize the importance of these principles and endeavor to follow them in our work whenever possible. However, sometimes our ability to do so is limited by laws and regulations imposed by settler governments.
Where does the data come from?
Most of the data we analyze is held by ICES, formerly known as the Institute for Clinical and Evaluative Sciences. ICES holds data that is generated when someone visits the doctor or accesses other healthcare services. They are allowed to do this because ICES is designated as a “prescribed entity” in Ontario under the Personal Health Information Protection Act (PHIPA). Their policies, practices, and procedures for using data are reviewed by Ontario’s Information and Privacy Commissioner.
Why is Mamow Ahyamowen working with ICES?
Organizations that hold First Nations data, like ICES, are governed by Federal and Provincial laws that do not allow them to share individual patient data with communities. By working with ICES, Mamow Ahyamowen facilitates a process through which communities can 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 in the face of legal and policy challenges.
Why is this work important to my community or region?
Organizations and communities have a good idea of the health concerns they’re facing but often lack the data to support what they know. For this reason, many organizations and communities use the data we provide to support advocacy efforts or funding applications. Sometimes, the data prompts them to deepen their understanding of what’s going on so they can meet the needs of the people they serve.
How is Mamow Ahyamowen governed? Who makes decisions about its work?
Mamow Ahyamowen is governed by a Steering Committee, which is made up of two members from each of our organizations. The Steering Committee meets monthly to talk about and guide the Alliance’s work. By taking direction from people who understand the realities of their respective regions, we can ensure that our work is benefiting organizations and communities from across our service area.
What happens to the data once the analysis is done?
This depends on the type of data:
-Data about individual communities: We only share this data with the community. They can then choose to share it with others if they would like to.
-Data about organizations and the communities they serve: We only share this data with the organization. They can then choose to share it with others if they would like to.
-Data about the entire Alliance: We share this data on our website (www.mamowahyamowen.ca) and in other public forums so that our stakeholders can see the progress we are making and understand trends across First Nations in Northern Ontario. They cannot see data specific to individual organizations or communities.
How can I access my community’s data?
Because communities own their data, we cannot give you access. You will have to ask your community directly. Please email [email protected] and we can put you in touch with the right person.
How does Mamow Ahyamowen respond to the Truth and Reconciliation Commission Calls to Action?
Truth and Reconciliation Commission (TRC) Call to Action 19 highlights gaps in how Indigenous health is measured in Canada and how this perpetuates health inequities. As a First Nations health data alliance, we see our work as responding to the associated recommendation:
“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.”