FAIR data sharing, but what about the RREST? Towards the FAIRRREST Principles in health data sharing.

Abstract

Data-driven improvement is essential for advancing healthcare delivery, artificial intelligence applications and achieving a learning health system; yet progress is constrained by persistent challenges in health data sharing and reuse. The vocabulary, governance models and operational processes that shape health data sharing and reuse remain fragmented and insufficiently standardised. The FAIR Principles (Findable, Accessible, Interoperable, and Reusable) were developed to promote data sharing in scholarly outputs and research objects. They are increasingly referenced across health contexts, but their technical focus does not address the societal, ethical and governance considerations essential in healthcare. This article builds on FAIR, proposing the FAIRRREST Principles: FAIR + Responsibility, Reciprocity, Ethics, Sustainability and Transparency. FAIRRREST is intended to complement existing technical standards by integrating existing considerations into a coherent and memorable healthcare-oriented framework. We propose that FAIRRREST provides a high-level principles framework for responsible data sharing and reuse across all healthcare contexts.