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Related Experiment Video

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An Open Information Model-Based Repository for Sustainable Re-Use of Heterogeneous Pandemics Research Data.

Kristina Scheuermann¹, Philip Hufeland², Birger Haarbrandt¹

¹Peter L. Reichertz Institute for Medical Informatics of TU Braunschweig and Hannover Medical School, Germany.

Studies in Health Technology and Informatics

|August 23, 2024

Summary

The COVID-19 Research Network Lower Saxony (COFONI) developed a data repository using open standards for pseudonymized data. This platform enhances pandemic preparedness by enabling accessible, cross-location research data retrieval.

Keywords:

COVID-19 data base data sharing health information interoperability open source pandemic preparedness pandemics

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Area of Science:

Public Health
Infectious Disease Research
Health Informatics

Background:

The COVID-19 pandemic highlighted the need for robust research infrastructure.
Effective pandemic preparedness requires rapid access to diverse, cross-location data.
Existing data repositories often lack standardization and interoperability.

Purpose of the Study:

To establish a technology platform for pandemic research and strategy development.
To create a research data repository enabling pseudonymized data provision and retrieval.
To leverage open standards and open-source components for FAIR data principles.

Main Methods:

Development of a research data repository utilizing openEHR standards and EHRbase open-source components.
Implementation of pseudonymization for patient data, including clinical and socio-demographic information.
Integration of an AQL query builder and a research request process for data access.

Main Results:

A functional research data repository (forschungsdb.cofoni.de) is established, adhering to FAIR criteria.
The platform facilitates cross-location data retrieval for heterogeneous datasets.
Researchers can perform new research, assemble cohorts, and export customized data.

Conclusions:

The COFONI platform provides a flexible, scalable blueprint for pandemic preparedness.
Standardized, open data representation enhances accessibility and research capabilities.
The repository supports rapid response and strategy development for future pandemics.