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Indigenous and Tribal Peoples Data Governance in Health Research: A Systematic Review

There is increasing potential to improve the research and reporting on the health and wellbeing of Indigenous and Tribal peoples through the collection and (re)use of population-level data. As the data economy grows and the value of data increases, the optimization of data pertaining to Indigenous p...

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Detalles Bibliográficos
Autores principales: Griffiths, Kalinda E., Blain, Jessica, Vajdic, Claire M., Jorm, Louisa
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8508308/
https://www.ncbi.nlm.nih.gov/pubmed/34639617
http://dx.doi.org/10.3390/ijerph181910318
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author Griffiths, Kalinda E.
Blain, Jessica
Vajdic, Claire M.
Jorm, Louisa
author_facet Griffiths, Kalinda E.
Blain, Jessica
Vajdic, Claire M.
Jorm, Louisa
author_sort Griffiths, Kalinda E.
collection PubMed
description There is increasing potential to improve the research and reporting on the health and wellbeing of Indigenous and Tribal peoples through the collection and (re)use of population-level data. As the data economy grows and the value of data increases, the optimization of data pertaining to Indigenous peoples requires governance that defines who makes decisions on behalf of whom and how these data can and should be used. An international a priori PROSPERO (#CRD42020170033) systematic review was undertaken to examine the health research literature to (1) identify, describe, and synthesize definitions and principles; (2) identify and describe data governance frameworks; and (3) identify, describe, and synthesize processes, policies and practices used in Indigenous Data Governance (ID-GOV). Sixty-eight articles were included in the review that found five components that require consideration in the governance of health research data pertaining to Indigenous people. This included (1) Indigenous governance; (2) institutional ethics; (3) socio-political dynamics; (4) data management and data stewardship; and (5) overarching influences. This review provides the first systematic international review of ID-GOV that could potentially be used in a range of governance strategies moving forward in health research.
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spelling pubmed-85083082021-10-13 Indigenous and Tribal Peoples Data Governance in Health Research: A Systematic Review Griffiths, Kalinda E. Blain, Jessica Vajdic, Claire M. Jorm, Louisa Int J Environ Res Public Health Review There is increasing potential to improve the research and reporting on the health and wellbeing of Indigenous and Tribal peoples through the collection and (re)use of population-level data. As the data economy grows and the value of data increases, the optimization of data pertaining to Indigenous peoples requires governance that defines who makes decisions on behalf of whom and how these data can and should be used. An international a priori PROSPERO (#CRD42020170033) systematic review was undertaken to examine the health research literature to (1) identify, describe, and synthesize definitions and principles; (2) identify and describe data governance frameworks; and (3) identify, describe, and synthesize processes, policies and practices used in Indigenous Data Governance (ID-GOV). Sixty-eight articles were included in the review that found five components that require consideration in the governance of health research data pertaining to Indigenous people. This included (1) Indigenous governance; (2) institutional ethics; (3) socio-political dynamics; (4) data management and data stewardship; and (5) overarching influences. This review provides the first systematic international review of ID-GOV that could potentially be used in a range of governance strategies moving forward in health research. MDPI 2021-09-30 /pmc/articles/PMC8508308/ /pubmed/34639617 http://dx.doi.org/10.3390/ijerph181910318 Text en © 2021 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Review
Griffiths, Kalinda E.
Blain, Jessica
Vajdic, Claire M.
Jorm, Louisa
Indigenous and Tribal Peoples Data Governance in Health Research: A Systematic Review
title Indigenous and Tribal Peoples Data Governance in Health Research: A Systematic Review
title_full Indigenous and Tribal Peoples Data Governance in Health Research: A Systematic Review
title_fullStr Indigenous and Tribal Peoples Data Governance in Health Research: A Systematic Review
title_full_unstemmed Indigenous and Tribal Peoples Data Governance in Health Research: A Systematic Review
title_short Indigenous and Tribal Peoples Data Governance in Health Research: A Systematic Review
title_sort indigenous and tribal peoples data governance in health research: a systematic review
topic Review
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8508308/
https://www.ncbi.nlm.nih.gov/pubmed/34639617
http://dx.doi.org/10.3390/ijerph181910318
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