Understanding Indigenous data governance when collaborating with post-secondary institutions
| dc.contributor.author | Shouting, Melissa A. | |
| dc.contributor.author | University of Lethbridge. Faculty of Health Sciences | |
| dc.contributor.supervisor | Vogelsang, Laura | |
| dc.contributor.supervisor | Rice, Jackie | |
| dc.date.accessioned | 2025-11-21T21:28:16Z | |
| dc.date.available | 2025-11-21T21:28:16Z | |
| dc.date.issued | 2025 | |
| dc.degree.level | Masters | |
| dc.description.abstract | Background: The Blood Tribe Department of Health (BTDH), with support from the Blood Tribe’s Chief and Council, are moving toward self-determination by establishing a collaborative partnership with a local post-secondary institution to create sustainable models of governance. This thesis is a small but essential piece of the work being conducted to determine best practices for developing data collection tools to assess and evaluate the community needs of Kainai Nation while understanding the resources needed for BTDH to enact the Ownership, Control, Access, and Possession (OCAP) Principles of data storage and management. Objective: This scoping review aimed to explore and describe what exists in the current literature on Indigenous Data Governance principles, and how the information is understood and utilized in collaborative health research initiatives. A goal and purpose for this review are to explore and understand the role that Indigenous populations or communities assume in collaborative research with academics and scholars. Methodology: The search was conducted using nine databases from inception until May 2024. Two reviewers independently screened for inclusion and exclusion using the Arksey & O’Malley (2005) scoping review framework. The principal investigator conducted the final review for full-text articles, based on content and findings, with additional criteria added. Results: Fifteen reports were included. Our included reports consisted of qualitative research (n=7), mixed methods approach (n=6), and quantitative studies (n=2). Findings are presented within a framework that discusses IDG in six areas: 1) study characteristics and demographics; 2) study objectives, designs and theoretical frameworks; 3) Indigenous data governance: an overview of community engagement; 4) ethical practices in research and data governance; 5) enacting community collaboration to guide and support Indigenous data governance; 6) limitations. Conclusion: Themes identified related to Indigenous Data Governance (IDG), as well as challenges and barriers to implementing IDG in collaborative health research projects that are situated within universities. A collaborative approach involving stakeholders, culturally competent training and capacity building are approaches to move forward, but the establishment of Indigenous-led research institutes, a source of stable funding, and further collaborative research opportunities focusing on building and supporting IDG through building nation-specific data ecosystems are needed. | |
| dc.embargo | No | |
| dc.identifier.uri | https://hdl.handle.net/10133/7226 | |
| dc.indigenous.name | Tsikakiiaaki | |
| dc.language.iso | en | |
| dc.publisher | Lethbridge, Alta. : University of Lethbridge, Faculty of Health Sciences | |
| dc.publisher.faculty | Health Sciences | |
| dc.relation.ispartofseries | Thesis (University of Lethbridge. Faculty of Health Sciences) | |
| dc.subject | Indigenous data | |
| dc.subject | Data sovereignty | |
| dc.subject | Data collection | |
| dc.subject | Health research | |
| dc.subject | Collaborative research | |
| dc.subject.lcsh | Dissertations, Academic | |
| dc.title | Understanding Indigenous data governance when collaborating with post-secondary institutions | |
| dc.type | Thesis |