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Health research governance of data access: A black-box challenge

Paula McDonald, Robyn Mayes, Peter Frederiksen, Christina Malatzky, Alicia Feldman , Janet Davies, Diana Leon-Espinoza

Abstract

This article addresses organisational governance, including perceived reputational concerns, by health data custodians as the principal barrier to timely and transparent research. While existing literature primarily addresses ethics review and site-specific research approvals, our experience with a Local Hospital Network (LHN) uncovered additional active barriers within this complex health system. We position these experiences in relation to literature that has documented inefficiencies in health research governance processes that lead to lost knowledge capital and opportunities for significant advancements in health systems research.

AH24341  Accepted 11 February 2025

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