Fostering global data sharing: highlighting the recommendations of the Research Data Alliance COVID-19 working group

Abstract

The systemic challenges of the COVID-19 pandemic require cross-disciplinary collaboration in a global and timely fashion. Such collaboration needs open research practices and the sharing of research outputs, such as data and code, thereby facilitating research and research reproducibility and timely collaboration beyond borders. The Research Data Alliance COVID-19 Working Group recently published a set of recommendations and guidelines on data sharing and related best practices for COVID-19 research. These guidelines include recommendations for clinicians, researchers, policy- and decision-makers, funders, publishers, public health experts, disaster preparedness and response experts, infrastructure providers from the perspective of different domains (Clinical Medicine, Omics, Epidemiology, Social Sciences, Community Participation, Indigenous Peoples, Research Software, Legal and Ethical Considerations), and other potential users. These guidelines include recommendations for researchers, policymakers, funders, publishers and infrastructure providers from the perspective of different domains (Clinical Medicine, Omics, Epidemiology, Social Sciences, Community Participation, Indigenous Peoples, Research Software, Legal and Ethical Considerations). Several overarching themes have emerged from this document such as the need to balance the creation of data adherent to FAIR principles (findable, accessible, interoperable and reusable), with the need for quick data release; the use of trustworthy research data repositories; the use of well-annotated data with meaningful metadata; and practices of documenting methods and software. The resulting document marks an unprecedented cross-disciplinary, cross-sectoral, and cross-jurisdictional effort authored by over 160 experts from around the globe. This letter summarises key points of the Recommendations and Guidelines, highlights the relevant findings, shines a spotlight on the process, and suggests how these developments can be leveraged by the wider scientific community.

Patients’ and Members of the Public’s Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review

“…Paprica et al [87] proposed the minimal specifications for data trust. Participatory governance is a key concept, as exemplified in the Academic Research Network of Diabetes Action Canada [72], the Research Data Alliance COVID-19 Working Group guidelines [201], and in 1 of the 7 recommendations from the work by Courbier et al [76] with patients with rare diseases. Participatory governance is also necessary to respect the Principles for Indigenous Data governance [201].…”

COVID-19-related research data availability and quality according to the FAIR principles: A meta-research study

“…Notably, recent studies demonstrate that data sharing as the first requirement for open data remains sparse in medical research (16), and that shared data often fail to meet the FAIR principles (17). For assessing research integrity, better decision-making, gaining public trust, and future preparedness, it is essential to clarify the data quality generated throughout the COVID-19 pandemic (18). Thus, this study aimed to assess the adherence of COVID-19-related research data to the FAIR principles (or FAIRness), a critical step towards improving data quality and trust in scientific outputs.…”