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

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.