Rapid and effective data sharing is necessary to control disease outbreaks, such as the current coronavirus pandemic. Despite the existence of data sharing agreements, data silos, lack of interoperable data infrastructures, and different institutional jurisdictions hinder data sharing and accessibility. To overcome these challenges, the Virus Outbreak Data Network (VODAN)-Africa initiative is championing an approach in which data never leaves the institution where it was generated, but, instead, algorithms can visit the data and query multiple datasets in an automated way. To make this possible, FAIR Data Points—distributed data repositories that host machine-actionable data and metadata that adhere to the FAIR Guidelines (that data should be Findable, Accessible, Interoperable and Reusable)—have been deployed in participating institutions using a dockerised bundle of tools called VODAN in a Box (ViB). ViB is a set of multiple FAIR-enabling and open-source services with a single goal: to support the gathering of World Health Organization (WHO) electronic case report forms (eCRFs) as FAIR data in a machine-actionable way, but without exposing or transferring the data outside the facility. Following the execution of a proof of concept, ViB was deployed in Uganda and Leiden University. The proof of concept generated a first query which was implemented across two continents. A SWOT (strengths, weaknesses, opportunities and threats) analysis of the architecture was carried out and established the changes needed for specifications and requirements for the future development of the solution.

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.

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.

The incompleteness of patient health data is a threat to the management of COVID-19 in Africa and globally. This has become particularly clear with the recent emergence of new variants of concern. The Virus Outbreak Data Network (VODAN)-Africa has studied the curation of patient health data in selected African countries and identified that health information flows often do not involve the use of health data at the point of care, which renders data production largely meaningless to those producing it. This modus operandi leads to disfranchisement over the control of health data, which is extracted to be processed elsewhere. In response to this problem, VODAN-Africa studied whether or not a design that makes local ownership and repositing of data central to the data curation process, would have a greater chance of being adopted. The design team based their work on the legal requirements of the European Union's General Data Protection Regulation (GDPR); the FAIR Guidelines on curating data as Findable, Accessible (under well-defined conditions), Interoperable and Reusable (FAIR); and national regulations applying in the context where the data is produced. The study concluded that the visiting of data curated as machine actionable and reposited in the locale where the data is produced and renders services has great potential for access to a wider variety of data. A condition of such innovation is that the innovation team is intradisciplinary, involving stakeholders and experts from all of the places where the innovation is designed, and employs a methodology of co-creation and capacity-building.