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

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  • Kalinda E. Griffiths

    (Centre for Big Data Research in Health, University of New South Wales, Sydney, NSW 2052, Australia
    Wellbeing and Preventable Chronic Diseases Division, Menzies School of Health Research, Tiwi, NT 0812, Australia
    Centre for Health Equity, University of Melbourne, Parkville, VIC 3010, Australia)

  • Jessica Blain

    (Centre for Big Data Research in Health, University of New South Wales, Sydney, NSW 2052, Australia)

  • Claire M. Vajdic

    (Centre for Big Data Research in Health, University of New South Wales, Sydney, NSW 2052, Australia)

  • Louisa Jorm

    (Centre for Big Data Research in Health, University of New South Wales, Sydney, NSW 2052, Australia)

Abstract

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.

Suggested Citation

  • Kalinda E. Griffiths & Jessica Blain & Claire M. Vajdic & Louisa Jorm, 2021. "Indigenous and Tribal Peoples Data Governance in Health Research: A Systematic Review," IJERPH, MDPI, vol. 18(19), pages 1-22, September.
    • Handle: RePEc:gam:jijerp:v:18:y:2021:i:19:p:10318-:d:647224
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    References listed on IDEAS

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    1. David Moher & Alessandro Liberati & Jennifer Tetzlaff & Douglas G Altman & The PRISMA Group, 2009. "Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement," PLOS Medicine, Public Library of Science, vol. 6(7), pages 1-6, July.
    2. Kalinda Griffiths & Clare Coleman & Vanessa Lee & Richard Madden, 2016. "How colonisation determines social justice and Indigenous health—a review of the literature," Journal of Population Research, Springer, vol. 33(1), pages 9-30, March.
    3. Susan Chatwood & Francois Paulette & G. Ross Baker & Astrid M. A. Eriksen & Ketil Lenert Hansen & Heidi Eriksen & Vanessa Hiratsuka & Josée Lavoie & Wendy Lou & Ian Mauro & James Orbinski & Nathalie P, 2017. "Indigenous Values and Health Systems Stewardship in Circumpolar Countries," IJERPH, MDPI, vol. 14(12), pages 1-20, November.
    4. Tanvi Desai & Felix Ritchie & Richard Welpton, 2016. "Five Safes: designing data access for research," Working Papers 20161601, Department of Accounting, Economics and Finance, Bristol Business School, University of the West of England, Bristol.
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    Cited by:

    1. Kalinda Griffiths & Abbey Diaz & Lisa J. Whop & Joan Cunningham, 2021. "The Health and Wellbeing of Indigenous and Tribal Peoples around the Globe: Ensuring and Promoting Best Practice in Research," IJERPH, MDPI, vol. 19(1), pages 1-9, December.

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