Rural Health and Indigenous Data Sovereingty
In addition to the principles from the previous section (see ‘Principles of Data Reorganization for Rural Health’), conversations around data must also include how data are being stored, accessed, and used in ethical and appropriate ways. As mentioned in ‘Problems with Rural Health Data Organization’, the way that health data is organized and managed reflects the underlying priorities and assumptions of the actors within a healthcare system, such as health administrators, physicians, academic researchers, and decision-makers within the Ministry of Health or the health authorities. When these assumptions are at odds with the actual needs of the population, the data can no longer be useful, and in fact could bring about even greater harm. We now know that rural communities have different data needs than their urban counterparts.2,7 Similarly, for the Indigenous nations and people in BC, their perspectives and worldviews on health and wellbeing differ from those of Western perspectives, and thus need to also be meaningfully included in the data infrastructure.
Indigenous data sovereignty refers to the inherent authority of each Indigenous nation to be able to govern the collection, ownership, access, and interpretation of all data relevant to their people and lands.11 Data sovereignty is just one critical piece of fully restoring Indigenous sovereignty as a whole, and is supported by several documents such as the United Nations Declaration on the Rights of Indigenous Peoples and the 2015 Truth and Reconciliation Commission of Canada.12,13 As it has been already mentioned throughout this chapter, data is power. Historically, this power has been used by the Canadian government to justify the imposition of colonial systems, as well as perpetuate harmful stereotypes against Indigenous Peoples.14 For example, a 2014 review found that 51 of 52 Indigenous neurodevelopmental studies focused solely on fetal alcohol spectrum disorder (FASD), despite higher incidence of autism spectrum disorder and other neurodevelopmental disorders in North America.15 This skewed emphasis can create a false impression that FASD is much more prevalent in comparison to other disorders, and mask other more relevant health concerns that communities may have.15 Moreover, many Indigenous communities across Canada have been subject to unnecessary or unethical research projects, where the results had little to do with their own community’s health needs, or were never meaningfully reflected back to the participants themselves. To this day, the provincial and federal governments continue to hold data related to the health and wellbeing of Indigenous Peoples that remains inaccessible to the specific communities themselves.14
Across the 45 rural communities in British Columbia with a hospital, around 14% of the population self-identifies as Indigenous, based on the 2021 census.16 This figure is likely an underestimate, as individuals may have chosen to not self-identify for various reasons, and the catchment is limited to a one-hour drive time boundary from the hospitals themselves. This means that when conducting research or quality improvement initiatives, one must consider how the data collection, analysis, and ownership methods adhere to the principles of Indigenous data sovereignty.11 This is done in order to ensure that the results of the data are meaningful to all rural residents and does not continue to perpetuate colonial assumptions and biases against Indigenous Peoples.
Additional Resources:
‘Indigenous’ is an umbrella term used in Canada to refer to three distinct groups of people: First Nations, Inuit, and Metis. Among First Nations, there are over 600 unique Nations across what is known as Canada, each with their own histories, languages, and cultural practices. Therefore, there is no one-size-fits-all approach to addressing Indigenous data sovereignty; however, many organizations and groups have developed principles and protocols to guide the process of ensuring that data respects the overarching concepts of Indigenous data sovereignty. Some of those resources can be found below:
- First Nations OCAP Principles are a set of four principles (Ownership, Control, Access, and Possession) that define how First Nations-specific data should be established. These principles were developed, and are trademarked, by the First Nations Information Governance Centre.
- Indigenous Data Sovereignty and Policy. This is an open-access book that examines how Indigenous data sovereignty is being actualized at an international scale and across many nations.
- Indigenous Knowledges & Data Governance Protocol is a document written by the Indigenous Innovation Initiative. They provide a more thorough explanation of what are Indigenous knowledges, as well as links to many more resources for protocols specific to First Nations, Inuit, or Metis communities.
Finally, it is important to note that Indigenous data sovereignty does not stand at odds with western research paradigms. Rather, respectfully including and acknowledging Indigenous data, and Indigenous worldviews and knowledge systems more broadly, can help researchers and community members collaborate on innovative projects that would otherwise be unattainable when seen from the lens of only one knowledge system.17 To learn more about the differences and strengths of western and Indigenous worldviews, see Chapter 5, ‘Why We Must Re-Engage’.
