The Kahnawà:ke Schools’ Diabetes Prevention Project: Perspectives on Data Sovereignty in Indigenous Community-Academic Partnered Health Research
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Authors
Ianni, Andrea
Date
Type
thesis
Language
eng
Keyword
KSDPP , Ethics , Governance , CBPR , OCAP
Alternative Title
Abstract
Introduction. Data sovereignty in Indigenous research recognizes the authority of Indigenous peoples over research data and processes. Data sovereignty is an important tool for the self-determination of Indigenous communities, as it fosters the collection of relevant data that aligns with community goals and interests. While guidelines exist to support Indigenous community-academic research partnerships in facilitating community-controlled research and data sovereignty, these guidelines often lack practical clarity, and could benefit from practical examples of successful partnerships. Purpose. The purpose of this study is to explore how The Kahnawà:ke Schools’ Diabetes Prevention Project (KSDPP), a mature and successful Indigenous community-academic research partnership, operationalizes data sovereignty and facilitates research in a community-controlled manner. Methods. Eight individuals having various roles within the KSDPP participated in semi-structured interviews. The interview guide was theory-informed using indicators of data sovereignty extracted from literature on data sovereignty in community-controlled research. The KSDPP Code of Research Ethics and letters of information/consent forms from past KSDPP studies were also reviewed. These data were collected and analyzed using a thematic analysis. Results. Seven themes were identified related to research benefits, collaboration and communication, capacity and growth, respectful relationships, data stewardship, defining community control, and growth through adversity. Discussion. The community controls the KSDPP research process and accordingly the content, management, and use of data created. The community values the cooperation and roles played by academic partners and defines control as appropriate and beneficial to their culture and context.
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ProQuest PhD and Master's Theses International Dissemination Agreement
Intellectual Property Guidelines at Queen's University
Copying and Preserving Your Thesis
This publication is made available by the authority of the copyright owner solely for the purpose of private study and research and may not be copied or reproduced except as permitted by the copyright laws without written authority from the copyright owner.