Indigenous data governance approaches applied in research using routinely collected health data: a scoping review

Globally, there is a growing acknowledgment of Indigenous Peoples’ rights to control data related to their communities. This is seen in the development of Indigenous Data Governance standards. As health data collection increases, it’s crucial to apply these standards in research involving Indigenous...

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Bibliographic Details
Published in:	NPJ digital medicine Vol. 7; no. 1; p. 68
Main Authors:	Engstrom, Teyl, Lobo, Elton H., Watego, Kristie, Nelson, Carmel, Wang, Jinxiang, Wong, Howard, Kim, Sungkyung Linda, Oh, Soo In, Lawley, Michael, Gorse, Alain-Dominique, Ward, James, Sullivan, Clair
Format:	Journal Article
Language:	English
Published:	London Nature Publishing Group UK 15-03-2024 Nature Publishing Group Nature Portfolio
Subjects:	692/308 692/700/3935 Artificial intelligence Biomedicine Biotechnology Data collection Health services Medical records Medicine Medicine & Public Health Native peoples Review Article
Online Access:	Get full text
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Summary:	Globally, there is a growing acknowledgment of Indigenous Peoples’ rights to control data related to their communities. This is seen in the development of Indigenous Data Governance standards. As health data collection increases, it’s crucial to apply these standards in research involving Indigenous communities. Our study, therefore, aims to systematically review research using routinely collected health data of Indigenous Peoples, understanding the Indigenous Data Governance approaches and the associated advantages and challenges. We searched electronic databases for studies from 2013 to 2022, resulting in 85 selected articles. Of these, 65 (77%) involved Indigenous Peoples in the research, and 60 (71%) were authored by Indigenous individuals or organisations. While most studies (93%) provided ethical approval details, only 18 (21%) described Indigenous guiding principles, 35 (41%) reported on data sovereignty, and 28 (33%) addressed consent. This highlights the increasing focus on Indigenous Data Governance in utilising health data. Leveraging existing data sources in line with Indigenous data governance principles is vital for better understanding Indigenous health outcomes.
Bibliography:	ObjectType-Article-2 SourceType-Scholarly Journals-1 ObjectType-Feature-3 content type line 23 ObjectType-Review-1
ISSN:	2398-6352 2398-6352
DOI:	10.1038/s41746-024-01070-3