Data holds the potential to drive rapid response and informed decision-making during public health emergencies. There is a need for timely and accurate collection, reporting and sharing of data within and between research communities, public health practitioners, clinicians and policymakers. Accurate and rapid availability of data will inform assessment of the severity, spread and impact of a pandemic to implement efficient and effective response strategies.
The availability of efficient information and communication technology has improved the global capacity to implement systems to share data during a pandemic. However, the harmonisation across these sophisticated yet diverse systems combined with the timeliness of accessing data across information systems are currently major roadblocks. The World Health Organization’s (WHO) statement on data sharing during public health emergencies clearly summarises the need for timely sharing of preliminary results and research data. There is also strong support for recognising open research data as a key component of pandemic preparedness and response, evidenced by the 117 cross-sectoral signatories to the Wellcome Trust statement on 31st January 2020, and the further agreement by 30 leading publishers on immediate open access to COVID-19 publications and underlying data.
The Research Data Alliance (RDA) COVID-19 Working Group (CWG) members bring varied global expertise to develop a body of work that comprises how data from multiple disciplines inform response to a pandemic combined with guidelines and recommendations on data sharing under the present COVID-19 circumstances. This extends to research software sharing, in recognition of the key role played by software in analysing data. The work has been divided into four research areas (Clinical, Omics, Epidemiology, Social Sciences) with four cross-cutting themes (Community Participation, Indigenous Data, Legal and Ethical Considerations, Research Software), as a way to focus the conversations and provide an initial set of guidelines in a tight timeframe. The detailed guidelines are aimed to help stakeholders follow best practices to maximise the efficiency of their work, and to act as a blueprint for future emergencies. The recommendations in the document are aimed at helping policymakers and funders to maximise timely, quality data sharing and appropriate responses in such health emergencies.
Licensing information: The files in this record have the license CC-0, except for: RDA_COVID-19_Recommendations_and_Guidelines_on_Data_Sharing_Lignes_directrices_et_recommandations_de_la_Research_Data_Alliance_durant_la_pandémie_(French_translation_Licensed).pdf and RDA_COVID-19_Recommendations_and_Guidelines_on_Data_Sharing_Infographic_(Final_Licensed) which are both licensed CC-By 4.0
RDA COVID-19 Working Group & Chue Hong, N. 2020, RDA COVID-19 Guidelines and Recommendations, Research Data Alliance. Available at: https://www.research.ed.ac.uk/portal/en/publications/rda-covid19-guidelines-and-recommendations(820d08f2-778c-406d-ac47-bc49304713b4).html