Spring 2020 Dutch funder ZonMw commissioned the GO FAIR initiative to lead a project on making SARS CoV-2 virus data FAIR, meaning that they are Findable, Accessible, Interoperable and thus Reusable by both humans and machines. To achieve this a GO FAIR VODAN (Virus Outbreak Data Access Network) Implementation Network was started. Until now, over 200 people from all over the world have joined this network. The goal of VODAN is making SARS CoV-2 virus data FAIR (Findable, Accessible, Interoperable and Reusable, both for machines and for humans). As a result, real world COVID-19 patient data is available for research, under well-defined conditions and with patient privacy well protected. Besides the funding of ZonMw the GO FAIR Foundation also received funds from the Philips Foundation, with the specific aim to set up a VODAN infrastructure on the African continent (VODAN Africa).
Opening up COVID-19 patient data via FAIR Data Points
End July 2020 marks the end of the ZonMw funded VODAN project. A proof of concept of a working VODAN infrastructure was demonstrated, and the VODAN in a Box tool was deployed.
The VODAN infrastructure is made up of a number of components:
- A semantic data model based on the case report form (CRF) following the WHO standards. This CRF is used globally to document COVID 19 patient data. The CRF semantic model allows interoperation with other related data sets.
- Localized VODAN FAIR Data Points (FDP’s), where the (meta)data of the machine-readable eCRF files could be hosted. Several FDP’s have been installed, in the Netherlands, USA and on the African continent.
- A user-friendly data-entry-wizard that allows data stewards to capture patient data in the CRF, to be used at the local clinic or hospital. Besides that, the tool converts the input into a machine-readable format, like RDF.
- Creating/updating the metadata on the installed VODAN FDP’s, “link” the patient data and indicate if the data can be shared
- A simple tool to allow queries to “visit” the (meta) data across multiple FDP’s, thereby performing analysis based upon certain characteristics of the recorded patients. A query could be: “Provide me all the cases, where a patient = female, where age = < 25 years and where no fever was detected at the initial take-in”. In several demonstrations, we were able to show that this architecture works and gives good results.
It is important to stress that sensitive patient data NEVER leaves the FDP, the hospital or the country, without the permission of the custodian.
The VODAN in a Box toolset contains the VODAN semantic model based on the WHO CRF file, the FAIR Data Point software, a dedicated VODAN Data entry wizard, and search/query functionality that enables to query multiple FDP’s for numbers of patients with a specific characteristic, in one user friendly solution. VODAN in a Box makes instalment of a VODAN FAIR Data Point easy.
We have created several resources to help you along in your VODAN FAIR data projects.