BigMedilytics Supporting Global Efforts during the Coronavirus Pandemic
As coronavirus swept around the globe and country after country introduced measures to protect the population. The political and medical communities attempted to gain a better understanding of the virus itself and how to deal with it. Meanwhile, the research community mobilised not only to contribute to global understanding of the pandemic but also to facilitate cross-disciplinary data sharing. The key, many researchers felt, was to encourage collaboration in the fight against the virus. But at the same time, this would involve sensitive data exchange.
By definition, medical and biological data (special category data) require extra care and protection. But also, data related to communities, vulnerable groups, those struggling to live normally whilst separated from family and friends, all need special consideration.
As well as initiatives from the European Data Protection Board and UNESCO, the Research Data Alliance (RDA) asked for experts across many disciplines to come together:
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- to clearly define detailed guidelines on data sharing under the present COVID-19 circumstances to help stakeholders follow best practices to maximize the efficiency of their work,
- to develop guidelines for policymakers to maximise timely data sharing and appropriate responses in such health emergencies, and
- to address the interests of researchers, policy makers, funders, publishers, and providers of data sharing infrastructures.
Organised into four main topic areas – Clinical, Omics, Epidemiology and Social Sciences – and four cross-cutting themes – Community Participation, Indigenous Populations, Legal & Ethical Considerations, and Research Software & Data Sharing – the working groups have produced guidelines and recommendations, now available for public comment.
BigMedilytics supports this kind of initiative, of course, because the project seeks to ensure access to advanced technologies as part of the healthcare of all citizens. There is more than that, though: we have also been directly involved in the global collaborative effort to share expertise and create the guideline documents. Dr Brian Pickering, Senior Research Fellow at IT Innovation in the University of Southampton, works with the Social Science group as well as acting as co-moderator for the Legal & Ethical Considerations cross-cutting activities.
June 30th update: you can find here the final version of the “RDA COVID-19 Recommendations and Guidelines for Data Sharing“.
