Integrating Indigenous Data Sovereignty Principles Into Learning Health Systems: Survey of Canadian PBRLNs and Framework Analysis.

Abstract

We sought to describe the current state of data governance principles in Canadian practice-based research and learning networks (PBRLNs) and to examine opportunities and challenges in applying Indigenous data sovereignty frameworks. We conducted a cross-sectional survey of Canadian PBRLN leaders. Survey results were described using summary statistics and directed content analysis of open-text responses. Indigenous data sovereignty frameworks were identified through a scan of recent publications. We identified and synthesized the main principles presented in each framework and assessed their relevance to PBRLNs. Eleven of 15 Canadian PBRLN leaders participated in the survey. The respondents noted several activities to be important for Indigenous data sovereignty: building knowledge of Indigenous data sovereignty within PBRLNs, having resources specifically dedicated to advance Indigenous data sovereignty, and understanding ways in which PBRLNs can advance this sovereignty. We identified 9 frameworks addressing Indigenous data sovereignty. Common principles among the frameworks were fostering relationships; ensuring collective benefits and action; respecting Indigenous ways of knowing and space for co-learning; prioritizing relevance to communities and places; ensuring data governance; building capacity; and striving for ethical sustainability. Our survey suggests that improving knowledge of Indigenous data sovereignty within PBRLNs is a necessary step in Canada. We identified a set of principles in Indigenous data sovereignty frameworks that should be applied in PBRLNs. Networks and learning health systems need to adopt "wise practices" that focus on place-based and relational learning to advance Indigenous reconciliation.