Open data to support European pandemic preparedness.

BY-COVID learnings and policy recommendations after 18 months of cross-disciplinary collaboration

As seen during the COVID-19 pandemic, and other infectious disease outbreaks, researchers, health care professionals and "citizens (in terms of consent to share)" need to store, document, share, access, analyse, link and process research and clinical data across disciplines and national borders in a coordinated response. Like other infectious disease outbreaks, such as haemorrhagic fevers (e.g. cholera), COVID-19 will remain a societal challenge beyond the immediate outbreak, considering its destructive and disruptive impact on healthcare systems and the global economy. In addition to SARS-CoV-2, the pathogen at the source of COVID-19, the risk from other emerging pathogens also persists, which will require similar concerted action to identify and characterise infections with pandemic potential, and enable rapid public health action to mitigate health and societal impacts. 

Provision of comprehensive open data on infectious agents and related diseases during outbreaks supports evidence-based decision-making across scientific, medical, public health and policy domains and promotes reproducibility of research outcomes. 

European readiness for future pandemics is of utmost importance, and whilst preparedness for such eventualities requires provisions for e.g. rapid vaccine production and public  procurement for personal protective equipment - far outside the scope of BY-COVID - the ‘open data’ aspects is a key component that should be addressed to ensure the preparedness of infrastructure as part of existing frameworks  such as the European Open Science Cloud (EOSC). Contributing to enhance data sharing and utility for streamlined local to global public health decision-making and action, as defined by the World Health Organisation (WHO) as a key objective in the Global genomic surveillance strategy. 

In pandemic times, the mobilisation of raw viral sequences and the identification and monitoring the spread of SARS-CoV-2 variants is particularly important. The BeYond-COVID (BY-COVID) project was funded by the European Union under the call “FAIR and open data sharing in support to European preparedness for COVID-19 and other infectious diseases” (HORIZON-INFRA-2021-EMERGENCY-01) and will run until 2024, to make COVID-19 data accessible to research scientists and others such as medical staff in hospitals or government officials. The world has generated vast amounts of data in response to the COVID-19 pandemic, and is still generating more. This data comes from many different sources, and identifying, connecting and integrating it for effective analysis is challenging on many fronts.

This Policy Brief presents preliminary results from the BY-COVID project as part of its comprehensive, sustainable and evidence-informed plan to effectively promote and improve FAIR (Findability, Accessibility, Interoperability, and Reusability) and open data sharing in support for European preparedness for COVID-19 and other infectious diseases. The Brief also places the project and its results in the context of the upcoming EOSC Partnership, the development of the European Health Data Space (EHDS) and the European Health Emergency Preparedness and Response Authority (HERA).