Terminology for a FAIR Framework for the Virus Outbreak Data Network-Africa

The field of health data management poses unique challenges in relation to data ownership, the privacy of data subjects, and the reusability of data. The FAIR Guidelines have been developed to address these challenges. The Virus Outbreak Data Network(VODAN) architecture builds on these principles, using the European Union’s General Data Protection Regulation(GDPR) framework to ensure compliance with local data regulations, while using information knowledge management concepts to further improve data provenance and interoperability. In this article we provide an overview of the terminology used in the field of FAIR data management, with a specific focus on FAIR compliant health information management, as implemented in the VODAN architecture.

Data Access, Control, and Privacy Protection in the VODAN-Africa Architecture

The Virus Outbreak Data Network(VODAN)-Africa aims to contribute to the publication of Findable Accessible, Interoperable, and Reusable(FAIR) health data under well-defined access conditions. The next step in the VODAN-Africa architecture is to locally deploy the Center for Expanded Data Annotation and Retrieval(CEDAR) and arrange accessibility based on the ‘data visiting’ concept. Locally curated and reposited machine-actionable data can be visited by queries or algorithms, provided that the conditions of access are met. The goal is to enable the multiple(re)use of data with secure access functionality by clinicians(patient care), an idea aligned with the FAIR-based Personal Health Train(PHT) concept. The privacy and security requirements in relation to the FAIR Data Host and the FAIRification workspace(to produce metadata) or dashboard(for the patient) must be clear to design the IT architecture. This article describes a(first) practice, a reference implementation in development, within the VODAN-Africa and Leiden University Medical Center community.