What mechanisms are in place to uphold data sovereignty for First Nations, Inuit and Métis Peoples? How are your First Nations, Inuit and Métis research and data governance frameworks, policies or protocols being implemented?

Context

Since time immemorial, First Nations, Inuit and Métis have lived vibrant, fulfilling lives through their knowledge of the land, animals, plants, medicines, and cycles of life in creation. This was based on generations of knowledge gained through skillful observation, experiential learning, and the wisdom to transform information into an innate understanding of their environments. This knowledge and wisdom were passed down to successive generations via time honoured mechanisms, used in important decision-making processes, upheld via sophisticated governing structures, enlivened in real life research processes and translated into action through a framework of values and teachings that reflected the ethical responsibilities as stewards of the land.

In this regard, First Nations, Inuit and Métis have held sovereignty over data, knowledge and knowledge systems since time immemorial.

Colonization, dispossession from the land, forced relocation, the imposition of the Indian Act, the removal of children to attend Indian Residential Schools or federal day schools, and a myriad of other colonial policies and mechanisms has eroded sovereignty in all its forms.

Moreover, information gathered about First Nations, Inuit and Métis Peoples has in the past been exclusively stewarded by governments and settlers. As the Alberta First Nations Information Governance Centre (AFNIGC) has noted, “[t]he content and purposes of data have historically been determined outside of First Nations communities, and the misuse of data has led to situations of misappropriation and broken trust.

Further, much of what has been written about First Nations, Inuit and Métis Peoples has been from a colonial lens resulting in limiting, stereotypical, and disparaging depictions.”¹

First Nations, Inuit and Métis data sovereignty describes the ability for First Nations, Inuit and Métis individuals, governments, organizations and communities to determine, participate, and steward data that is collected with and about them. Data sovereignty acknowledges the right to decide what should be collected, to “determine who should be counted among them,”² who owns and can access the data, with whom and how any data is shared, and ensures that there is collective benefit in the use of data. Interpretation is also an essential means to reframing data from a deficits-based focus to one that is strengths-based.

Several of these concepts are outlined in the First Nations Data Governance Strategy and the Ownership, Control, Access and Possession (OCAP® principles developed by the First Nations Information Governance Centre³ as well as data governance principles outlined by Inuit Tapiriit Kanatami’s (ITK).⁴ ITK is also developing a national Inuit data strategy and the Métis National Council is in the process of establishing a Métis data development and governance strategy.

Data governance involves decision-making processes about data. It “harnesses a people’s values, rights and interests to guide decision making about how their data are collected, accessed, stored and used.”⁵  First Nations, Inuit and Métis are “rights holders” when it comes to data and information, as such they should govern and protect information wherever it exists and ensure it is used to address the needs of community members.

Governance frameworks, policies and protocols help to carry out these processes and define who has decision making authority, how accountability and transparency is ensured and how those affected (i.e., stakeholders, community members or citizens) have a voice and can participate in such decisions.

Governance is stronger when it represents the legitimate voice of rights holders, is accountable and transparent, reflects the socio-historical and political contexts of communities served and is decolonized and framed within a cultural lens.

Why is this indicator important to First Nations, Inuit and Métis?

Research agreements, memoranda of understanding, and data sharing agreements serve as the primary means of clarifying and confirming mutual expectations as well as commitments between research partners and communities. These are central to meaningful, trusting, and productive relationships and ensure that the needs and aspirations of the communities with respect to data and research are upheld.

Data governance frameworks, protocols and policies are tangible mechanisms which outline how data sovereignty is to be enacted, however, not all First Nations, Inuit and Métis governments, communities and organizations have capacity at this time to develop and implement these instruments.

For First Nations, Inuit and Métis Peoples, data sovereignty and data governance are key avenues to ensure voices are heard with respect to research and data collection within the cancer care system and more broadly.

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How does this affect care and outcomes?

Mutually respectful agreements which honor data governance principles and respond to the unique requirements of First Nations, Inuit and Métis communities lead to better data collection and research.

Within ethically-sound research and data collection and analysis efforts, the evidence gathered can be used to inform health services, programs, policies, and system improvements thereby enhancing care and outcomes.

When rights holders have a sound, reliable, and trusted governance body serving data and statistical needs, decisions are better informed and consequently care and outcomes are improved.

When more governments, organizations and communities have capacity to establish data governance frameworks, protocols and policies, they are better able to lead in gathering the data and evidence needed to create self-determined solutions and influence change in the cancer care system.

Towards health equity

Agreements to support research and data sharing, collection and linkage with an equity-focus can help uncover and address inequities in access to prevention and care, quality of care, and patient outcomes.

Data sovereignty and data governance is a key mechanism for First Nations, Inuit and Métis individuals and communities to assert the principle of “nothing about us without us” and is an essential pathway to actualizing OCAP principles as “rights holders” in decision-making processes about data.

What this would mean for people in Canada

Effective data governance led by First Nations, Inuit and Metis “rights holders” is one mechanism to respond to Truth and Reconciliation Commission of Canada’s Calls to Action numbers 19, 20, and 21.^6,7 It also upholds commitments to reconciliation and adheres to the foundational principles of the United Nations Declaration on the Rights of Indigenous Peoples.⁸

In the longer term, this would ensure that all people in Canada experience high quality cancer prevention and care and equitable access.

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