RDA COVID-19 Working Group recommendations and guidelines on data sharing
RDA COVID-19 Working Group, Group Co-chairs: Juan Bicarregui, Anne Cambon-Thomsen, Ingrid Dillo, Natalie Harrower, Sarah Jones, Mark Leggott, Priyanka Pillai
Research Data Alliance, 2020. DOI: https://doi.org/10.15497/rda00052
Under public health emergencies, and particularly the COVID19 pandemic, it is fundamental that data is shared in both a timely and an accurate manner. This coupled with the harmonisation of the many diverse data infrastructures is, now more than ever, imperative to share preliminary data and results early and often. It is clear that open research data is a key component to pandemic preparedness and response.
This report specifically emphasises the importance of the following during the COVID-19 emergency response:
- Sharing clinical data in a timely and trustworthy manner to maximise the impact of healthcare measures and clinical research during the emergency response;
- encouraging people to publish their data alongside a paper (particularly important in reference to omics data);
- underlining that epidemiology data underpin early response strategies and public health measures;
- providing general guidelines to collect or link important social and behavioural data in all pandemic studies;
- evidencing the importance of sharing research software alongside the research data it analyses, and providing guidelines and best practices for enabling this;
- offering general guidance to navigate the applicable rule of law and exploit relevant ethical frameworks relating to the collection, analysis and sharing of data in similar emergency situations;
- looking at data management and sharing issues related to the technical, social, legal and ethical considerations from the community participation perspective.