942Global Indigenous and Tribal Peoples Data Governance in Health Research: A systematic review

Abstract

Abstract Background Despite a broad range of research using Indigenous specific data, there is limited research to describe what constitutes data governance. To identify priorities and monitor progress in health, data is critical. Accurate collection and appropriate analysis of population level data is necessary in understanding population distributions of health and wellbeing. The aim of this review is to provide a comprehensive understanding of the current literature describing Indigenous Data Governance (IDG) processes in health research. Methods A comprehensive a-priori search strategy has been developed and submitted for registration through PROSPERO(APP170033). Literature will be sourced from bibliographic databases, review articles, key journals, conference proceedings, grey literature and referrals by key experts up until 01/2020 and synthesised (through meta-study and meta-aggregation approaches) in accordance with PRISMA guidelines. Results Once completed, a descriptive overview along with discussion on IDG processes in decision making specific to health research will be synthesized. IDG 'interventions' may include, but are not limited to, community advisory committees, Indigenous leadership, or institutional and/or project policies pertaining to decision making processes in the use of data in health research. Conclusions This review will provide evidence of definitions and procedures specific to IDG in the literature and how IDG, as a process, is operationalised in Indigenous health research across the globe. Key messages Preliminary Key messages include the lack of IDG processes described in the literature and the need for the development of guidelines to support researchers in operationalising Indigenous Data Sovereignty.