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

Area of Science:

• Health Informatics
• Data Science
• Information Governance

Background:

• Sharing and exploiting Health Big Data (HBD) faces challenges in data protection, governance, and interoperability.
• Compartmentalized and heterogeneous data hinder effective research and data utilization.
• Establishing trust and transparency among researchers, citizens, and data providers is crucial.

Purpose of the Study:

• To explore how recent technologies can overcome challenges in Health Big Data sharing and exploitation.
• To design and test a platform (INSHARE) for secure and interoperable HBD access.
• To establish robust data governance and security measures for HBD.

Main Methods:

• The INSHARE project employed an experimental proof-of-concept approach.
• Platform design involved analyzing use cases, defining governance (adapted from SCANNER model), and specifying technical architecture.
• The platform integrates data repository, semantic integration, processing, security, and governance services.

Main Results:

• A platform architecture was defined and tested using 6 data providers, 5 studies, and 11 data sources.
• The platform addresses data protection, legal/ethical aspects, and interoperability issues.
• Key features include secure access, semantic integration, data quality monitoring, and data watermarking.

Conclusions:

• The INSHARE platform demonstrates a viable solution for secure and interoperable Health Big Data sharing.
• Implementing robust governance and advanced technologies can foster trust and facilitate data exploitation.
• The project provides a foundation for future advancements in HBD research and application.