Data sharing in the time of COVID-19: What works & what we need
In English and in French
The COVID-19 pandemic has increased the importance and the urgency of sharing de-identified individual level clinical and study data. Early signals suggested an unprecedented commitment by the research community to data sharing and transparency, including: rapidly established international research collaborations to accelerate the development of new tools to prevent or treat COVID-19; open access to COVID-19 articles in the scientific literature granted by all major journals; data transparency requirements from funders and journals; the establishment of dedicated COVID-19 data platforms for clinical and other research data; and recommendations that preprint publications include statements on the availability of underlying data.
In practice, however, much more COVID-19 data have been promised than delivered, and many pre-pandemic obstacles to data sharing remain unchanged. Interested researchers often still need to contact investigators directly to access data. Capacity limitations, technological complexities, the challenges of broad consent, and the problem of inequalities between researchers in high- and low-resource settings all contribute to a context and a culture where de-identified individual-level clinical and research data are not routinely shared, despite stated commitments.
The objective of the session is to raise awareness of the lack of sharing of de-identified individual level data from COVID-19 clinical studies, share strategies for overcoming some of the obstacles, and identify what is still needed to increase clinical data sharing during the pandemic