Vodans

The spread of the virus causing the COVID-19 outbreak is far from over. During this epidemic and in earlier occasions, we have seen severely suboptimal data management and data reuse. Moreover, access to the immensely valuable data of past and current epidemics is not always equally accessible for different affected populations and countries. For instance, the data from the past Ebola epidemics are very difficult to find, to access, and if accessible, they are not interoperable, let alone reusable.  Under the urgent need to harness machine-learning and future AI approaches to discover meaningful patterns in epidemic outbreaks, we need to do better and ensure that data are FAIR (in this sense also meaning Federated, AI–Ready).

Purpose of the Implementation Network
This time, we can do better. We now have the technical ability, as well as the commitment from experts in a series of affected countries, to make the SARS CoV-2 virus data FAIR, meaning that they are Findable, Accessible, Interoperable and thus Reusable by both humans and machines, during this epidemic of COVID-19. The technical components that make this possible can remain in place, waiting in ready state for potential future infectious disease outbreaks.

We started this Implementation network with a very narrow focus, based on seed funding from co-founding partners, ZonMW and the Philips Foundation (see the manifesto), namely to make source data FAIR and make them available for reuse in a distributed manner. These initial projects under VODAN IN are coordinated by the GO FAIR Foundation. With a sense of urgency driven by the rapid developments on COVID-19  we came together to  launch a GO FAIR Implementation Network to address the immediate challenges. For this epidemic, unfortunately, we have to ‘FAIRify’ COVID-19 data ‘after the fact’ and use Chinese, Dutch, Swedish, etc. and English electronic (or even hand-written) health records to create proper FAIR data. The FAIRification will initially focus on the Clinical Research Form (CRF) model following the WHO standards. Multiple IN partners will create input forms that make it easy for local caregivers to create FAIR-CRF data in real time as a first step. As a second step, we will jointly develop (via online work sessions) localized FAIR Data Points (FDP). FDP is a FAIR data repository with ‘docking’ capabilities as a ‘station’ for ‘trains’ (virtual machines (VMs)) that come to ‘visit’ the data locally, with a specific question to ask. The local data custodian (frequently a hospital or centre for disease control and prevention type of institution) grants permission to VMs to ask the question / run analyses. As the personal data of patients never leaves the underlying database of the local institution, GDPR issues are largely accommodated and in this way data can be ‘shared’ or rather ‘visited’ without violating any patient rights and, in the case of a disease outbreak, also governed by the laws and policies of the individual jurisdictions in which the outbreak manifests.

¹ was conceived to kick-start a ‘community of communities’ that could design and rapidly build a truly international and interoperable, distributed data network infrastructure that supports evidence-based responses to the viral outbreak. The IN has a longer-term goal to reuse the resulting data and service infrastructure, also for future outbreaks. As a GO FAIR IN, VODAN will restrict itself to projects that are directly associated with FAIR data [1] and services relevant to COVID-19. This also means that VODAN will not concern itself with projects purely aimed at studying, for instance, transmission and severity genetics, experimental drug development, vaccine development or actual clinical interventions currently executed to control the epidemic. Only insofar as such activities are in need of access to, and processing of, FAIR data, VODAN partners can add FAIR data and services value.

Early on in the process, CODATA^Footnote2, the committee of the International Science Council^Footnote3, the Research Data Alliance (RDA)^Footnote4 and the World Data system^Footnote5 now also operating in joint actions under the name ‘Data Together’^Footnote6, reviewed the initial actions of VODAN and issued a joint statement^Footnote7 of support. At the request of the European Commission, RDA established a Working Group^Footnote8, which is also co-supported by the Data Together organisations.

IN–IN collaboration: As a typical, open, GO FAIR Implementation Network, VODAN is open to all parties, public or private, who commit to follow the FAIR guiding principles and who explicitly wish to prevent vendor lock-in (see GO FAIR rules of engagement: https://www.go-fair.org/resources/rules-of-engagement/). The VODAN partners rely on the communities already established in other GO FAIR INs, including the Personal Health Train