Data integration between clinical research and patient care: A framework for context-depending data sharing and in...

Area of Science:

• Biomedical Informatics
• Clinical Research Informatics
• Health Data Management

Background:

• Bridging the gap between clinical practice and research is hindered by data transfer challenges.
• Existing solutions lack a unified approach for bidirectional data flow between treatment and research settings.
• Routine clinical data is often inaccessible for research, and research findings are slow to integrate into patient care.

Purpose of the Study:

• To present a generic, web-based software framework for integrated health data management and computational analytics.
• To facilitate a bidirectional transfer of data between clinical treatment contexts and research settings.
• To support both patient-specific healthcare decisions and research endeavors while ensuring data protection and quality.

Main Methods:

• Developed a web-based software framework based on a generic data management concept.
• Integrated data analysis, visualization, computer simulation, and model prediction functionalities.
• Implemented a regulation-compliant pseudonymization service with audit trail functionality.
• Created tailored clinical and research views within the front-end application.

Main Results:

• Demonstrated a feasible integrated generation and backward propagation of data analysis results and model predictions.
• Enabled patient-specific data visualization, analysis, and outcome prediction in the clinical view.
• Facilitated exploration of pseudonymized data in the research view.
• Showcased successful application through two use-cases in haematology/oncology.

Conclusions:

• The developed framework effectively integrates clinical data and computational analytics for improved healthcare and research.
• It enables seamless integration into clinical information systems or electronic health records.
• The solution addresses the need for efficient and secure bidirectional data exchange in biomedical research and practice.