First Nations data sovereignty in Canada

2.1Pre-contact

First Nations people have occupied and used lands in what is now known as Canada for thousands of years prior to the arrival of Europeans, each possessing distinct cultural languages, histories, and traditional ways of life [1]. Some lived nomadic hunter-gatherer lifestyles, while others were agricultural societies. Many First Nations societies were matriarchal, wherein women were highly revered as political leaders (often choosing male leaders), decision-makers, and life-givers, and were central to the well-being of the family and tribe. This also meant that the family property, wealth, and clan all passed through the female line. Traditionally, gender roles were regarded as equally important, balanced, with both men and women working together in their respective duties to ensure the family and community remained intact. Although this may vary from nation to nation, men were primarily involved in hunting, warfare, crafting weapons, and building shelters, while women engaged in horticultural activities – harvesting plants and food, making crafts and clothing – and were the primary caregivers of children [2]. Both men and women were responsible for imparting valuable teachings to their children. Elders also played a vital role as advisors and educators of spiritual and cultural knowledge in the community.

Since time immemorial, First Nations people had the ability to determine all their needs and how to best meet those needs using the plants, herbs, animals, and the environment to survive, heal, and maintain balance. Their abilities and decisions were based on years of knowledge gained through observations, experiences, and information gathered from their surrounding environments. Thousands of years of relating to the land provided the occupants, as stewards, with the knowledge and ability to harness their knowledge and pass it down to succeeding generations. In this way, First Nations, as sophisticated societies with sophisticated governing structures, were engaged in research processes, policy-making, and knowledge sharing as part of their ethical responsibilities as stewards of the land [3].

2.2Post-contact

As Europeans began settling in North America in the 1400s, including Canada, they relied heavily on First Nations for their knowledge and resources to survive the harsh climates and terrain. As independent Nations, First Nations created alliances with Europeans and played a significant role in trade and the economy, exploration routes, and strategic warfare. As European desires for increased land and control over trade grew, First Nations people were forced into smaller and smaller tracts of land, which was often away from settler communities, with limited or no access to the developments and inventions of the outside world [1, 4, 5]. The settlers and their governments saw First Nations people as a problem to be eradicated in order to further their vision of a new nation that expanded from east to west [4]. Over the next two centuries, conflicts arose over competing interests among the Europeans (Britain and France) and First Nations over political and military alliances, the fur trade, land and resources, and religious beliefs.

Following the end of the Seven Year War in 1763 (in which many First Nations fought as British allies), Great Britain claimed territory in North America and issued the Royal Proclamation of 1763, which gave recognition to First Nations’ rights to land and title and laid the foundation for defining the future relationship between First Nations and the Crown, including a framework for negotiation of Indian treaties. In order to obtain the land needed for farming, the British Crown entered into treaties with Indigenous peoples during the 18th century. They also established an Indian Department that dealt specifically with matters related to First Nations, such as maintaining peaceful relations, securing land and resources, and protecting the interest of the British Crown. In the years that followed, there was a shift in the relationship between First Nations and the settlers. First Nations were progressively pressured into surrendering vast amounts of lands and territories, renouncing their traditional beliefs and way of life, and integrating into the European culture.

Section 91(24) of the Constitution Act, 1867 gave the federal government legislative authority and responsibility for “Indians, and Lands reserved for the Indians”. Canada signed treaties with First Nations beginning in 1871 and continuing long after the turn of the century. Treaties have traditionally been drafted as agreements between nations. There are 11 numbered treaties in Canada, as well as other adhesions and treaties signed [6, 7]. Many scholars [6, 8, 9, 10, 11, 12, 13] provide descriptions of colonization, extermination, and assimilation policies, including residential schools, the Sixties Scoop, and other tactics utilized by the federal government that were used to rid Canada of the so-called “Indian problem”.11 The Sixties Scoop saw thousands of Indigenous children “scooped up” (i.e. taken without consent) from their families and communities between the 1950’s and the 1980’s by government child-welfare services, and placed with non-Indigenous foster homes and adoptive families, and even in different countries.

The term “Indian” is a misnomer that was applied to the original peoples of North America by European explorers when they first arrived as they believed they had landed in India. The Indian Act of 1876 is the federal legislation that allowed, and continues to allow, the Canadian government to control most aspects of Indian lives. Under this Act, “Indian” became the legal term to identify an individual who is considered a registered status,22 treaty status, or non-status Indian. It also defined how status was passed from generation to generation or terminated [13, 14, 15]. The Indian Act resulted in three categories of Indians which include: 1) status Indians who are legally entitled to be registered in the federal government’s Indian Registration System; 2) Treaty Indians who are members of a community that signed a treaty with the Crown; and 3) non-Status Indians who are not legally entitled to be registered in the Indian Registration System. Other terms that have often been used interchangeably with “Indian” include: North American Indian, Native, and Native American. Today, the most commonly used contemporary term is First Nations, a term that was adopted by most First Nations leaders themselves, and can be seen as an act of self-determination. The Indian Act also governs “Lands Reserved for Indians” and therefore created what is known as Indian reserves, which are dedicated tracts of land owned by the British Crown “for the use and benefit of a [Indian] band”. Treaties between First Nations and the Crown were also negotiated and signed and this saw the transfer of large tracts of land in return for certain provisions and promises laid out in the respective treaty. Readers should also note that the terms “Aboriginal” (as found in the Constitution Act, 1982) and “Indigenous” are the collective nouns used to refer to First Nations, Inuit, and Métis peoples and should not be used in the Canadian context except to refer to these three distinct peoples collectively.

The dominant colonial government imposed patriarchy on First Nations societies and negatively influenced traditional gender roles, leadership structures, and governance – diminishing women’s roles and reinforcing inequality between the sexes. Enfranchisement, the foundation of Canadian Indian policy, was the process by which Indians lost their registered Indian status and were assimilated into the dominant Canadian society. Those First Nations individuals who enlisted in the Canadian military, who enrolled in university, or who became priests, lost their Indian status and were “enfranchised”, becoming so-called civilized Canadian citizens. The discriminatory treatment of Indian women and their descendants was also reinforced in the status provisions of the Indian Act. Status Indian women who married non-First Nation men lost their Indian status, including the ability to transfer status to their children. First Nations men marrying non-First Nation women could not only preserve Indian status but also saw their spouses gain Indian status, as well as their children. These provisions severed First Nations women and children from their culture, identity, and traditional lands.

Further discriminatory legislation and policies banned cultural ceremonies and practices, created reserves, outlawed or restricted the selling of produce or other resources from reserves, and forced children and youth to attend residential schools. The Pass System, an unlawful Canadian policy, ensured that First Nations people could not freely move off reserve without the written consent of the appointed government agent, known as an Indian agent [7, 16]. The White Paper of 1969 was yet another attempt by the Canadian government to terminate the special legal relationship with First Nations and eliminate the Department of Indian Affairs. This policy was soundly rejected by First Nations leaders and communities across Canada as many believed that it would lead directly to assimilation and cultural genocide [17].

Aboriginal Peoples, regardless of status and residency, have a special constitutional relationship with the Crown, including existing Aboriginal and treaty rights, which is recognized and affirmed in section 35 of the Constitution Act, 1982. As described above, in this Act, “Aboriginal peoples of Canada” includes the Indian, Inuit, and Métis peoples of Canada. Following Canada’s support of the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) in 2010, the federal and provincial governments, as well as many Aboriginal groups and organizations, have moved to support the use of the term Indigenous, rather than the term Aboriginal.

In 2015, Canada committed to a renewed nation-to-nation relationship, based on the recognition of rights, respect, cooperation, and partnership with Indigenous peoples in Canada. In a statement by Prime Minister Justin Trudeau, Canada vowed to fully implementing the 94 Calls to Action of the Truth and Reconciliation Commission of Canada (TRC) to eliminate the socio-economic gaps and improve the well-being of Indigenous Peoples in Canada [18]. Canada further declared that the UNDRIP would be fully implemented into Canadian law, including Article 19 on requirements of states to obtain the free, prior and informed consent (FPIC) of Indigenous peoples on any decisions that would impact them. Although they have made many grand promises, some commentators have questioned Canada’s true intentions. In a May 30, 2018, MacLean’s article, Dr. Pamela Palmater stated that “it would be just one of the dizzying number of explicit promises that Trudeau would break by purchasing the Trans Mountain pipeline from Kinder Morgan for $4.5 billion” [19]. Despite a recent Federal Court of Appeal decision to disallow Canada’s Trans Mountain pipeline expansion project on the basis that Canada did not fulfill its duty to consult with affected First Nations, Canada has vowed to move forward on the pipeline [20]. In February 2018, Minister Trudeau announced that Canada would develop, in partnership with Indigenous Peoples, a transformative Recognition and Implementation of Rights Framework. Analysis done by the Yellowhead Institute reveals that “the Rights Framework expresses a clear and coherent set of goals, which aim to suppress Indigenous self-determination within Canadian Confederation” [21] and eliminate federal responsibility under the Indian Act.

Over the past century, First Nations have been continuously subjected to expensive litigation by different levels Canadian government to challenge and defend their inherent and constitutionally protected rights. Despite the myriad and complex challenges, First Nations in Canada remain unwavering in their aspirations and efforts to have their full rights as self-governing nations and original inhabitants of the land recognized and respected. First Nations rights transcend the reserve boundaries, the Indian Act, and government policy. Integral to these rights are concepts of data sovereignty and information governance. Further, there is a long history in Canada of First Nations peoples and communities being subjects of research, including unethical medical, health, and social research by academic and government researchers.

Much of the literature on First Nations peoples has been written from a colonial perspective resulting in a limited representation and oftentimes stereotypical and damaging depictions of First Nations peoples. For years, different types of research and research instruments have been conducted on First Nations in an attempt to better understand their experiences, health status, and their socio-economic and cultural environments. Although data can help identify priorities, set strategic goals, and support community planning, many First Nations communities have experienced their community’s data being used for other purposes and not in their best interests or benefit. 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” [22]. Further, data collection through government agencies has been used against communities to extract children from their families during the residential schools era and the ‘60’s scoop: “Government agents knew of families and their children because those parents had shared information with government agents through registry programs, legal involvement, or other course of life activities” [22]. As a result of this deep communal and personal loss, the mistrust in the system resulted in the withdrawal from sharing personal information and engagement with government systems. The legacy of unethical research practices experienced by First Nations communities had led to their mistrust in research and information sharing with non-First Nations researchers, institutions, and governments. Increasingly, First Nations’ citizens and leaders “acknowledge and act on the premise that information needs defending and protecting; just as we protect our lands, forest, animals and fish, we need to protect our data, which is an extremely valuable renewable resource” [23]. First Nations sovereignty over information and data is a crucial step toward changing the research paradigm, as well as achieving respective nations’ self-governance aspirations and exercise of self-determination.

4.1Canadian census

At present, the most recent statistical data on Canada’s First Nations population is from 2016 and is derived from two main sources, each with its own limitations with regard to accuracy. The mandatory 2016 Census, administered by Canada’s national statistical agency, Statistics Canada, is one main source of population data and captures the broadest range of First Nations (“North American Indian”) identity definitions and thus gives the highest population estimate of 977, 235 people with self-reported First Nations identity nationwide [37]. Table 1 shows the First Nations population counts from the 2016 census by sex, type of residence, status, and band membership, where such information is available [37, 38].

Although the short form national census aimed to include all individuals who reside in occupied private dwellings in Canada, the long form census (also known as the National Household Survey, or NHS), from which enumeration of people with First Nations identity is derived, samples 25 percent of the population [39], therefore introducing sampling error into the results; however, this error is minimized due to the achievement of a 96.9 percent response rate [40]. Although the census is the only Statistics Canada instrument that collects data in First Nations communities and reserves, there were 14 such communities that were “incompletely enumerated” in 2016, due to interruption of enumeration prior to completion or to denial of permission by community leadership to administer the census. These issues impact estimates of the First Nations identity population, the Registered or Treaty Indian population, the population who reported membership in a First Nation or Indian band, and the population living on Indian reserves and Indian settlements [39].

Additional questions in the long form census were asked to determine classification, with regard to Indian status, First Nation or Indian band membership, and residence on an Indian reserve or settlement. Of those identified as First Nations, 744,855 persons (76.2 percent) reported having registered or treaty Indian status [24], with Registered Indians defined as “persons who are registered under the Indian Act of Canada,” and Treaty Indians defined as “persons who belong to a First Nation or Indian band that signed a treaty with the Crown” [37]. However, when considering the estimate based on the total sample of respondents who answered the status question (beyond those who identified as First Nations), 820,120 persons in Canada hold registered or treaty Indian status [37]. Respondents were instructed to exclude persons who had not registered under provisions of the Indian Act, even if they were entitled to do so [41].

Another distinct yet overlapping census classification is “Membership in a First Nation or Indian band,” referring to whether a person is a member of “a body of Indians for whose collective use and benefit lands have been set apart or money is held by the Crown, or who have been declared to be a band for the purpose of the Indian Act” [42]. The 2016 Census estimates that 792,140 persons hold this classification [39]. Note that for this purpose “First Nation” and “Indian band” share the same definition and that the distinction in terminology reflects how certain First Nations choose to identify themselves. Statistics Canada also points out that it is not always necessary for a band member to be a Registered Indian, as many First Nations have exercised the right to establish their own membership code. Further, they note that due to the incomplete enumeration issue described above and the self-response nature of the census data, these may differ from First Nations’ administrative data and should not be considered official estimates of membership counts [42]. As defined in the census, “On reserve” refers to Indian reserves and settlements, and all other areas are referred to as “Off reserve” [43].

4.2Indian Registration System

The second main source of data on First Nations population counts is the Indian Registration System (IRS) maintained by Crown-Indigenous Relations and Northern Affairs Canada, formerly Indigenous and Northern Affairs Canada (INAC), which only includes registered status First Nations living on or off-reserve. Further, life event (i.e., births, deaths, migration between or off reserves or outside of Canada) data is updated by the bands with varying frequencies, meaning that the IRS numbers may not represent the true population at a given time [44]. As of December 31, 2017, the IRS included 987,520 registered First Nations individuals in 618 bands. It is important to note that the Indian Register does not distinguish between Indian Act reserves and lands affiliated to First Nations operating under Self-Government Agreements (SGAs).

Derived from the Indian Act, the IRS definition of a reserve is “a tract of land, the legal title to which is vested in Her Majesty that has been set apart by Her Majesty for the use and benefit of a band.” To determine counts of registered individuals living on reserve and crown land, the Indian Register includes those who “reside on lands legally defined as Indian reserves, on Indian settlements usually represented by Crown Lands and on other lands affiliated to self-governing First Nations,” while the off-reserve counts include “individuals affiliated to First Nations who may reside neither on reserve nor on Crown land according to the Indian Register” [44]. At December 31, 2017, there were 3,247 reserves, but not all are inhabited: of the registered First Nations population, 502,016 people were living on reserve and crown land and 478,504 were living off reserve. Table 2 shows the Registered First Nations population counts from the IRS, by sex and type of residence [45], and Table 3 shows the Registered First Nations population from the IRS by region [45].

Some of the main sources of statistical health data in Canada are under federal jurisdiction, and include: Census, vital registration, national health and social surveys, health services utilization records, and surveillance systems [46]. The Canadian Community Health Survey (CCHS), administered by Statistics Canada, collects information on the health status, health care system use and determinants of health of the Canadian population. The CCHS is not administered to First Nations peoples living on-reserve. Additionally, on-reserve First Nations are not included in the Aboriginal Peoples Survey (APS) – a national survey that collects social, economic, and cultural information of First Nations peoples living off-reserve. Coverage and data collection in Canadian government data initiatives/surveys is also a major challenge when considering different First Nations contexts/environments, such as on or off-reserve and status or non-status First Nations.

While the provinces and territories are responsible for the administration and delivery of health services to Canadians, the provision of health care services to First Nations is the responsibility of the federal government. The major sources of Canadian administrative health data are collected from provincial and territorial health agencies, such as vital statistics, disease surveillance registries, health care utilization, health insurance registries, and social surveys, and stored in a variety of health system databases. For instance, the Canadian Institute for Health Information (CIHI) manages multiple Canadian health databases and works with a broad range of partners to provide health data and information. Since Canadian health data have unique identifiers, records across different databases may be linked for research purposes. Together, these systems produce a vast amount of quality health information to be used for evidence-based decision-making to improve quality of care and patient health outcomes. For instance, the Health Insurance Registry captures demographic information of anyone who was alive and eligible to receive health care in the fiscal year. Status First Nations people are covered under the Non-Insured Health Benefits Program (which is transitioning from Health Canada’s First Nations and Inuit Health Branch to Indigenous Services Canada) and receive health services and benefits that are not insured by provincial and territorial governments such as dental, vision care, prescription drugs, medical supplies, and medical transportation costs. However, First Nations still hold provincial and territorial health insurance and are included in the provincial and territorial health registries [47]. The Canadian Chronic Disease Surveillance System (CCDSS), administered by the Public Health Agency of Canada, uses linked administrative data from provincial and territorial surveillance systems, such as the Health Insurance Registry, to generate national estimates and trends on over 20 chronic diseases.

Researchers have identified the absence of ethnic identifiers at all levels as a key challenge to Indigenous coverage in health data systems [48]. This has been a longstanding oversight for many reasons, including Canada’s emphasis on assimilation, the historic indifference to cultural specificity, and misuse of appropriate nomenclature. Concerns include the fact that “inconsistencies in First Nations, Inuit, and Métis ethnic identifiers in provincial health data collected through vital registration systems, hospital administrative datasets, and acute and chronic disease surveillance systems means that these populations are often invisible in health statistics” [48]. There is also a “systematic exclusion of subpopulations of First Nations people from health data initiatives according to place of residence or Indian Act grouping” [48]. Record linking provincial/territorial health datasets to First Nations registry lists provide a partial solution, however, the quality of the registration lists is potentially inaccurate and limited to First Nations that are registered [48]. Postal code has been used as a proxy, however, these are limited to areas where the large majority of the population is First Nations [48]. These large data gaps have made it more difficult to obtain a comprehensive, clear picture of the health status of First Nations in Canada.

In the past 20 years, there have been some significant advances in the First Nations health information environment. Progressive practices have been, and continue to be, identified that are assisting to fill in the First Nations patient identifier gaps of the health data initiatives and systems across Canada [49]. Some of initiatives to identify First Nations individuals in health database systems [49] include:

4.3First Nations regional health survey

Under complete First Nations control, the First Nations Information Governance Centre (FNIGC), with its ten regional partners, designs and delivers unique data-gathering initiatives such as the First Nations Regional Health Survey (RHS), First Nations Early Childhood, Education and Employment Survey (FNREEES), First Nations Community Survey, and a new First Nations Labour and Employment Development Survey (FNLED), which provide an abundance of credible, culturally-relevant information about First Nations people living on reserve and in northern communities.

In existence since 1994, though originally envisioned as a longitudinal study, RHS is the only national health survey of First Nations living on reserve and in northern communities in Canada. The RHS is a cross-sectional survey designed to measure the health, well-being, and social determinants of First Nations children (0–11 years), youth (12–17 years), and adults (18 years and over). Information gathered provides useful insight into timely issues and expands First Nations’ knowledge of the strengths, resiliency, and conditions of First Nations. The RHS concluded its third phase of data collection in the fall 2016 and released a two-volume report in 2018.

The RHS provides unparalleled insight into a wide array of factors, from language and culture to health-care access and food security, which affect the health and well-being of First Nations people. It collects and explores data related to health-care access, language, culture, nutrition, food security, physical activity, and personal and community wellness. In their evaluations of the RHS survey and processes, both the Harvard Project on American Indian Economic Development and the Johns Hopkins University Bloomberg School of Public Health recognized the RHS, an Indigenous-led instrument to assess the health of Indigenous populations, as “a uniquely successful model worldwide” [51]. The high completion rates of the RHS and other surveys have made the FNIGC and its regional partners Canada’s premier source of information about First Nations people living on reserve and in northern communities. The community-based delivery of successive survey cycles – as well as workshops, conferences, and training – have helped build community data governance and management capacity.

RHS surveys are typically conducted in the home using computer-assisted personal interviewing (CAPI). In Phase 3, the sampling frame was based on INAC Indian Registry counts from 2014 of those living on reserve or on Crown land. Input and feedback were received from regional advisory committees, Regional Coordinators, regional data analysts, and key stakeholders. As part of the RHS Phase 3 development process, the questionnaire content of the previous phases of the RHS underwent extensive review and revisions. Comparability, non-response, and write-in answers were carefully assessed, and new themes were added to the core components based on extensive feedback. In many regions, survey questions were developed to address issues specific to First Nations people living within their respective region. Prior to deployment, the RHS undergoes an ethical independent review process to ensure its scientific and ethical acceptability.

6.1First Nations-led approaches to data sovereignty

First Nations’ resistance to the unilateral, exploitative, or otherwise inadequate collection and use of information about them has been persistent over time. However, events in the early and mid-90s led First Nations leadership to assert control and build First Nations capacity for data collection, management, and dissemination in a concerted way. These efforts were driven by both practical responses to exclusionary Government of Canada data collection practices that threatened to compound existing socio-economic inequities, and an energized commitment to self-governance in the areas of research, education and stewardship of First Nations’ information generally.

The first Regional Health Survey (RHS), then called the First Nations and Inuit Regional Longitudinal Health Survey or RHS pilot, took place in 1997 and involved First Nations and Inuit from across Canada. The impetus for the survey came in 1994 when several large longitudinal surveys were introduced for the Canadian population as a whole: the National Population Health Survey; the National Longitudinal Survey of Children and Youth (NLSCY); and the Survey of Labour and Income Dynamics. Collectively, these three surveys were designed to provide a wealth of information on health, child development, and labour market dynamics. However, none of them included First Nations peoples living on reserves and the number of off-reserve Aboriginal Peoples included was generally too small to permit reliable conclusions. The effect was to widen the gap between the amount of information available for the Canadian population in general and the amount available for Aboriginal groups. The RHS pilot in 1997 was implemented to address these deficiencies while acknowledging the need for First Nations and Inuit to control their own health information. It was the first national health survey in Canada to be carried out and controlled by First Nations and Inuit groups themselves” [61].

One of the greatest challenges for the RHS process was to balance:

The solution was to approach the RHS not as a single national survey, but rather as a collection of regional surveys designed to provide a certain amount of national-level information. It allowed for regional priorities to be addressed and produced a feeling of ownership of the results and an interest in the findings. All of these things helped maximize use of the data – which was the fundamental objective of the survey [61].

As the First Nations Information Governance Committee, the antecedent to the current FNIGC, noted in 2004, officials from Health Canada and other ministries recognized the need to have comparable information for Aboriginal Peoples. In 1994, they hired John O’Neil of the Northern Health Studies Unit at the University of Manitoba to investigate the feasibility of developing a National Longitudinal Aboriginal Survey. O’Neil and his colleagues held a series of workshops across the country and consulted with about 150 Aboriginal technical staff working in the fields of health, child development, education, and economic development. The objective was to answer the question: “What kind of national longitudinal study would be acceptable to First Nation, Inuit and Métis people at the community level, while at the same time meeting the information needs of First Nations, Inuit and Métis organisations at the community, regional and national levels, and other levels of government?” [61].

Similarly, in 1999, the original First Nations and Inuit Regional Health Survey National Steering Committee had decided that the survey “should take the form of a group of regional surveys. The regional surveys were to be controlled and implemented by regional organizations. Late in 1995, the First Nations and Inuit political organizations in each region were invited to make a regional survey proposal. Each region found an organization or person to provide technical support to the survey and serve as Co-principal Investigators. In each region a Regional Steering Committee was created to ensure that regional and local needs were met. Data from each of the regional surveys were compiled into a common database by staff at the University of Manitoba.” [62].

The FNIGC evolved directly from the National Steering Committee (later the FNIG Committee, as above) of the original RHS. Formed in 1995 to implement the balanced regional-national strategy described above, the regionally-representative structure of the National Steering Committee was maintained when the FNIGC became an independent, incorporated entity in 2010. In addition to providing oversight and governance over the RHS, the FNIGC is also mandated by the AFN in Resolution no. 48/2009 to:

Since its transformation from Committee to Centre, the FNIGC has expanded its quantitative research considerably. Operating to meet First Nations’ data and information needs, as mandated by AFN resolutions originating from regional First Nations’ decision-making bodies, FNIGC has added the FNREEES and FNLED survey to its core operations.

In terms of advancing First Nations’ data sovereignty, these extensions of FNIGC’s survey work perform multiple functions. Firstly, they demonstrate the considerable organizational capacity as First Nations organizations are developing as self-governing information units. FNIGC states that FNREEES was “the most technically complex survey ever undertaken by FNIGC, [and] a unique initiative, marking the first time this breadth of information had ever been collected in First Nations on-reserve and Northern communities” [64]. Secondly, the survey subject area marked a notable foray beyond the health paradigm and lent methodological credence to the argument for holistic approaches to well-being and development, which First Nations have made continuously. This holds true of both the FNREEES and FNLED. Thirdly, and not expectedly given the first two points, these surveys have opened possibilities for evidence-based research in the direct interest of First Nations, based on strengths not deficits. According to the FNIGC:

In addition to the national RHS, FNREEES, and FNLED survey, First Nations are also independently pursuing several highly effective initiatives at the regional level. Examples include:

6.2First Nations principles of Ownership, Control, Access, and Possession (OCAP®)

What links all of these initiatives – national, regional and in between – are the integration and defence of the principles of OCAP®. Since their establishment in 1998, the OCAP® principles have upheld First Nations rights over research that impacts them. OCAP® acknowledges and respects that the right of self-determination of First Nations includes the jurisdiction and authority to make decisions about research in their communities. It addresses issues of privacy, intellectual property, data custody and secondary use of data. OCAP® was conceived as a result of First Nations interest in protecting their data and information, the legacy of unethical research practices, and the desire to have control over research in their communities [68].

OCAP® has also been described as “a political response to colonialism and the role of knowledge production in reproducing colonial relations.” According to the report of the Royal Commission on Aboriginal Peoples:

FNIGC plays a triple role here:

OCAP® is the de facto standard for conducting research on First Nations, and has grown to include the governance of First Nations information. Through the use of OCAP®, First Nations leadership is able to assert sovereignty over and provide direction on how information can be used to benefit the community in a manner that mitigates any harm. Conversely, First Nations leadership is more accountable to their membership for the use and management of community information. The principles of OCAP® are:

To give practical expression to these principles and values in its own operations, the FNIGC also developed a set of governance and structural supports to ensure that data sovereignty was achieved and protected. These include the following:

6.3National data governance strategy

The need for relevant data and control was underscored in the 1996 Report on the Royal Commission on Aboriginal Peoples, which called for government support of Indigenous information management systems, including for infrastructure, training and capacity at the nation level. This priority is central to self-determination. Data created by and for First Nations reflect their goals, priorities, and worldviews rather than those of distant federal programs. Development of regional information governance capacity will have a solid foundation on which to build. For an entire generation, the FNIGC and its regional partners have tirelessly promoted the importance of relevant, high quality, accessible data created by and for First Nations.

There is mutual interest, from First Nations and the Government of Canada, in supporting First Nations-led institutions that are built from the ground up and mandated to serve First Nations governance at the nation level. As conceived by the FNIGC and its regional partner organizations, First Nations Regional Information Governance Centres (RIGCs) would be such institutions. These Centres would be First Nations-led, regionally-based data stewards and advisory centres that can support the information governance needs of First Nations governments and their service organizations in a way that enables them to realize their right to self-determination.

At their July 2016 Annual General Assembly, the AFN Chiefs-In Assembly agreed (Resolution no. 57/ 2016) that Indigenous data sovereignty be recognized as “the cornerstone of nation-building” [72] and sought federal government funding and support to develop fully functional regional First Nations information governance centres across Canada, as well as coordination of a national First Nations data governance strategy. Further support for these notions and the FNIGC is found in Resolution no. 42/2018, wherein the Chiefs-in-Assembly state that they:

To help bring the RIGCs to realization, the FNIGC is working closely with its ten regional survey delivery partners. Each region is unique and at a different stage of development but all ten regions will be engaged in this work via the development of a National Data Governance Strategy, which will determine in part how they will inter-relate and come together to do national-level work, while respecting that the visions and goals of First Nations vary by community and region.

As with all work of the FNIGC and its regional partners, developing and establishing RIGCs will be guided by the First Nations principles of OCAP®, which will be defined by each Nation through their expression of data sovereignty and the role of the RIGCs will be to further assist them in doing so. Consistent with the OCAP® principles themselves, the FNIGC and regional organizations adhere to free, prior and informed consent, respect for nation-to-nation relationships, and recognize the distinct customs of nations. The primary role of RIGCS will be to assist First Nations in collecting, holding, managing, and using their data in ways that will help inform and drive their self-determination.

FNIGC’s vision is to see every First Nation achieve data sovereignty in alignment with its distinct worldview. The national and regional organizations work together to strengthen both data sovereignty and the development of governance and information systems at the community level.

By providing First Nations with OCAP®-based training, advice and support, RIGCs can help communities realize the “power of data” to inform their decision-making. At the same time, they can help communities realize their own power to decide about data and information and to exercise the same sovereignty that other governments take for granted. This work is crucial in a context where government program structures continue to treat communities as mere administrators, collecting data on behalf of the government funder.

One obvious further function of RIGCs will be to support the data and research needs of First Nations regional service and political organizations in addition to First Nations communities. Yet there are other points of interaction as well. Where most major service sectors fall under provincial jurisdiction, First Nations must often interface with provincial or territorial systems to support their data needs. Although there is much variation in quality of relationships between First Nations and provincial governments, there are a growing number of tripartite or bilateral agreements with provinces and territories that entail data- or information-sharing agreements. At the same time, fully functioning RIGCs will be poised to help the federal government measure progress on its commitments to support a transformed relationship with First Nations. Since November 2015, the federal government has made commitments on several fronts. Most notable among them are the commitments to implement the UNDRIP and the Calls to Action of the Truth and Reconciliation Commission; to develop a new fiscal relationship with First Nations featuring predictability, sufficiency and mutual accountability; to reduce the reporting burden; and to support the rebuilding of First Nations institutions and capacity.

For all these processes, there will be need for significant First Nations-led work to establish relevant, culturally-based indicators and to gather and share national-level statistics. Only such work can allow measurement of progress toward stated goals. Measuring progress will require Canada to enter into respectful information-sharing relationships with First Nations. Regional organizations could help mediate such relationships, as well as contribute their data, insights, and perspectives to national statistics-gathering processes led by the FNIGC.