Pathways for First Nations Health Data Sovereignty: Creating Capacity Through Governance

Sampling, Data Collection, and Analysis

The sample was derived from existing engagement pathways determined by BC First Nations. As a response to the invitation to engage on First Nations data, four of five First Nations health regions agreed to participate. Driven by the mandate to serve as the operational arm of First Nations in BC, the intent of the research was to understand more about First Nations data, how it should be used and managed, and what tools were required for communities to develop their own data capacities:

1. What is important to know about First Nations health data?

The research questions were intended to be accessible and open-ended in order to generate rich dialogue about what First Nations data means as well as the direction the health system should be moving within the concept First Nations data sovereignty.

It is important to highlight that FNHA had previously engaged and written extensive reports on data governance, ethics, and research within BC’s health system in 2016. Thus, the administrative data supported open coding, followed by the axial coding of themes. ¹⁰ The themes have since been validated and endorsed by formal resolution of elected officials of each of the health regions that participated. This reciprocal theory development will perhaps forever evolve, just as the information technology systems within health have foresight to do. The emphasis on the themes derived from engagements and administrative applications is that they are to withstand systems change and act as pathways to ever-evolving and developing systems.

Ethics

This project was funded by the Canadian Institute for Health Research under the Institute of Simon Fraser University and research ethics were pursued and approved through Simon Fraser University’s ethics board. Through Canada’s Tri-Council Policy Statement, research emphasizes appropriate community engagement and involvement with Indigenous Peoples when conducting research on Indigenous topics. ¹¹ The research overview and questions were distributed beforehand and revisited at the time of data collection. Ethical guidelines and consent forms were explained in plain language, verbally including clear description of the intent and use of the findings: to inform policies and procedures within health data systems.

First Nations Data

The creation of First Nations data, driven by First Nations Peoples, enables truth-telling. Shifting to a lens of wholistic well-being and vibrancy is a social determinant of health in itself. ² Moreover, it is imperative that all health data systems work to define their population surveillance with distinct identification of Nation-hood. Acknowledging the pan-Indigenous lens that continues to prevail in western data systems, distinctions-based data is a human right. Identifying human beings within their race, kinship, and identity will contribute to stories that have been silenced by hegemonic systems.^3,12 However, in order to do this without causing more harm, First Nations Data Sovereignty must be the foundation for all health data governance systems and be harmonized with all other actions committed by the BC Government through the Declaration on the Rights of Indigenous Peoples Act (DRIPA) legislation.

Community Centred Systems

As narratives about Indigenous Peoples have been driven by uninformed observers, entire data systems discussing First Nations health must ensure proper alignment with collective principles over First Nations data such as FNIGC’s Principles of Ownership, Control, Access, and Possession (OCAP®). ¹³ The First Nations Perspective on Health and Wellness in BC is one that harmonizes an individual with their kin, land, spirit, and community. ¹⁴ Contrary to the positivist functions demonstrated within siloed ministerial operations over the land and people, one’s health is unable to be reduced from its collective; therefore, data linkages should work to showcase the intersectionality of human health. First Nations communities across BC articulated various concerns for their children and families including gender and sexuality, illness, and violence that require real and contextual attention.

High Performance Data, Policies, Tools, and Analytics

While current privacy legislations protect personal information, the absence of clear understanding of the intersections of First Nations information continue to provide unfettered use of personal and population health data. Thus, operational policies and protocols regarding consent processes and data linkages require additional safeguards with clear congruencies to First Nations rights and title holders. First Nations Data Sovereignty should be clearly defined and operationalized in health authority and academic institutional policies and procedures.

The advancement of health data systems is highly intersectional. Considering the aforementioned demand to consider First Nations sovereign systems ecologically, First Nations governments are grossly underfunded to participate in health systems innovations despite their direct impact on their land and kinship. Many communities in BC still struggle with sustainable internet connection let alone proper connectivity within electronic medical records or data analysis and interoperability software. Therefore, data governance principles must call out fundamental inequities that still exist within general access and infrastructure. Such enhancements can ensure high-quality operations as well as generation of high-quality data.

Promoting Community Planning and Resources

The governance over First Nations data must have appropriate resources attached to them. While First Nations Peoples have had data systems since time immemorial, the translation between traditional and western systems have been disrupted through ongoing colonization. ¹⁵ In order to meaningfully participate in data innovations, First Nations must be afforded the opportunities to build knowledge and capacity in these areas. Such work does not necessarily mean inviting First Nations attendance in western decision-making pathways: Much of this work is grounded in resurgence and remembering of data systems that were passed down intergenerationally. The terms in which data are collected, used, viewed, and managed must be nestled within First Nations epistemologies and wrapped with clear connection to the betterment of First Nations communities. Ongoingly, data reported about First Nations Peoples continues to benefit health systems at large with very little (if any) afterthought on how research findings benefits nation sovereignty. Simply put, if data are reporting on First Nations Peoples, BC First Nations require findings to directly relate back to the betterment of First Nations Peoples. Operationally, this requires significant decolonization of decision-making systems and unlearning by western partners (Figure 1).OPEN IN VIEWER

Important Considerations

At the time that FNHA was developed, the decision to reflect a regional health model was to ensure alignment of operations, and plans within their respective territories. This model has posed some challenges for communities straddling two different health regions. Additionally, communities within the Interior health region did not participate in this study; however, their historical position papers, engagements, videos, and documents were applied in the axial coding. This absence of participation should not be viewed as a limitation in research, rather celebrated as a fierce act of self-determination and First Nations data sovereignty. First Nations communities reserve the right to create their own data sovereignty principles that are not subject to aggregation in any form. While the findings are being published based on their methodological opportunities, it is important to note that the framework has not been published as a BC First Nations Health Data Framework widely, as there has not been clear direction through formal endorsement around how far this framework will be utilized. In its current state, the four First Nations health regions that participated in this work are working toward operationalization within their regional health jurisdictions. FNHA extends deep commitment to continue to evolve systems that can best support First Nations Data Sovereignty and transform the BC healthcare system.

Knowledge Translation and Activation

While working to develop a framework for governance over First Nations health data, the chosen methodology works to uphold First Nations governance, self-determination, reciprocity, and sustainability. Arguably, Knowledge Translation (KT) tools continue to prioritize the academy and system. While there is a place for informing mainstream systems within their western methodologies, the absence of Data Sovereignty fundamentally ignores any opportunity for real change. This calls for an immediate halt to First Nations Peoples providing their data with no clear parallel to their direct benefit. ¹⁶ Morton Ninomiya, and colleagues noted “Rarely does KT prioritize the peoples, nations, or communities who need – and have the rights to – the knowledge(s) the most, which maintains gaps in health literacy and inequities between the researchers and the researched” (p. 2). ⁷ While the findings of this study satisfy the purpose outlined in the grant application, the work itself will continue to evolve in real time.

To date, the data collection, findings, and framework have been reviewed and discussed with governance and operational tables within the First Nations health governance pathways. As a result, many First Nations in BC have formally endorsed the above framework to be applied into health systems and data policies. Immediately subsequent to the passing of the framework in one health region, the principles were asserted at operational tables for regional health partners to populate their relevant policies and procedures with the principles set out in the findings. This was a significant demonstration of the margins between referencing First Nations Data Sovereignty at large to asserting operational governance protocols as accountability measures within their respective policies.

Moreover, the research findings have been intended to have utility within BC health systems, creating opportunities with partnered operations to further sustain First Nations Data Sovereignty. The findings have been applied to FNHA’s strategic planning and operations. Emphasizing community-driven pace and engagement, the research on this topic will continue to evolve based on the direction of sovereign Nations in BC.