Study explores frameworks for improved indigenous data sovereignty
Integrating indigenous data sovereignty principles into learning health systems: survey of Canadian PBRLNs and framework analysis
Original Research
Study Explores Frameworks for Improved Indigenous Data Sovereignty
Background: In Canada, current approaches to managing health data do not always reflect principles of Indigenous data sovereignty, which emphasize Indigenous peoples’ rights to control how data about their communities are collected, used, and shared. This study examined how practice-based research and learning networks (PBRLNs) currently approach data governance and explored how Indigenous data sovereignty frameworks could apply. Researchers conducted a cross-sectional survey of leaders from Canadian PBRLNs and reviewed published frameworks describing Indigenous data sovereignty principles.
What They Found: Eleven of 15 Canadian PBRLN leaders responded to the survey. Although several networks reported having organizational or data governance policies, only one reported applying Indigenous data sovereignty principles. Most respondents were unsure whether their network did so. Respondents identified the importance of building knowledge of Indigenous data sovereignty within PBRLNs, having resources specifically dedicated to advance Indigenous data sovereignty, and understanding ways to do this. Common framework ideas included relational, collective benefits and action, respect for Indigenous ways of knowing and space for co-learning, relevance to communities and places, access to data, building capacity, and ethical sustainment.
Implications: Even though PBRLNs in Canada are not yet incorporating Indigenous data sovereignty principles, existing Indigenous governance frameworks provide guidance on how to begin.
Integrating Indigenous Data Sovereignty Principles Into Learning Health Systems: Survey of Canadian PBRLNs and Framework Analysis
Brianne Wood, PhD, et al
Dr. Gilles Arcand Centre for Health Equity, NOSM University, Thunder Bay, Ontario, Canada
Thunder Bay Regional Health Research Institute, Thunder Bay, Ontario, Canada
END
Study Explores Frameworks for Improved Indigenous Data Sovereignty
Background: In Canada, current approaches to managing health data do not always reflect principles of Indigenous data sovereignty, which emphasize Indigenous peoples’ rights to control how data about their communities are collected, used, and shared. This study examined how practice-based research and learning networks (PBRLNs) currently approach data governance and explored how Indigenous data sovereignty frameworks could apply. Researchers conducted a cross-sectional survey of leaders from Canadian PBRLNs and reviewed published frameworks describing Indigenous data sovereignty principles.
What They Found: Eleven of 15 Canadian PBRLN leaders responded to the survey. Although several networks reported having organizational or data governance policies, only one reported applying Indigenous data sovereignty principles. Most respondents were unsure whether their network did so. Respondents identified the importance of building knowledge of Indigenous data sovereignty within PBRLNs, having resources specifically dedicated to advance Indigenous data sovereignty, and understanding ways to do this. Common framework ideas included relational, collective benefits and action, respect for Indigenous ways of knowing and space for co-learning, relevance to communities and places, access to data, building capacity, and ethical sustainment.
Implications: Even though PBRLNs in Canada are not yet incorporating Indigenous data sovereignty principles, existing Indigenous governance frameworks provide guidance on how to begin.
Integrating Indigenous Data Sovereignty Principles Into Learning Health Systems: Survey of Canadian PBRLNs and Framework Analysis
Brianne Wood, PhD, et al
Dr. Gilles Arcand Centre for Health Equity, NOSM University, Thunder Bay, Ontario, Canada
Thunder Bay Regional Health Research Institute, Thunder Bay, Ontario, Canada
END