Sharing Health Big Data for Research - A Design by Use Cases: The INSHARE Platform Approach

Abstract

Sharing and exploiting Health Big Data (HBD) allow tackling challenges: data protection/governance taking into account legal, ethical, and deontological aspects enables trust, transparent and win-win relationship between researchers, citizens, and data providers. Lack of interoperability: compartmentalized and syntactically/semantica heterogeneous data. INSHARE project using experimental proof of concept explores how recent technologies overcome such issues. Using 6 data providers, platform is designed via 3 steps to: (1) analyze use cases, needs, and requirements; (2) define data sharing governance, secure access to platform; and (3) define platform specifications. Three use cases - from 5 studies and 11 data sources - were analyzed for platform design. Governance derived from SCANNER model was adapted to data sharing. Platform architecture integrates: data repository and hosting, semantic integration services, data processing, aggregate computing, data quality and integrity monitoring, Id linking, multisource query builder, visualization and data export services, data governance, study management service and security including data watermarking.

Keywords: Information Dissemination; Information Storage and Retrieval; Registries.