Towards shared patient records: an architecture for using routine data for nationwide research

Area of Science:

• Medical Informatics
• Clinical Research Architecture
• Health Data Management

Background:

• The need for adaptable architectures for shared electronic patient records is critical in medical informatics.
• Current systems often lack extensibility for diverse research questions and multi-purpose data utilization.

Purpose of the Study:

• To introduce eardap, an architecture designed for utilizing routine data in nationwide clinical research across multiple hospitals.
• To demonstrate the extensibility and ease of use of eardap for creating research databases.

Main Methods:

• Developed eardap as a terminology-based architecture.
• Implemented a terminology management system (TMS) and a module generation tool.
• Validated the system using pediatric oncology data in Germany.

Main Results:

• eardap demonstrated applicability in pediatric oncology research.
• Core system functions were successfully used in routine clinical settings across several hospitals.
• The quality of item planning in TMS directly impacts data harmonization and reusability.

Conclusions:

• eardap provides an extensible architecture for nationwide clinical research using routine data.
• The system simplifies database creation for new research questions, requiring no specialized informatics skills.
• Emphasis on interfaces and data security is crucial for successful eardap implementation.