Data sharing platforms: instruments to inform and shape science policy on data sharing?

Abstract

Data sharing platforms are being constructed to make clinical cohort data more findable, accessible, interoperable, and reusable. Their primary purpose is to enhance the sharing of data. However, the lack of incentives for data sharing has been conceptualized in both scientific literature and policy documents as a problem of science policy. As platforms can only facilitate data sharing through technical means, they may not be able of fully resolving the data sharing problem. In this article, it is shown how the design of platforms may help in addressing policy barriers to data sharing in the long-term. In essence, platforms can be made into policy instruments that generate information on the data sharing process and the functionality of data access committees. This allows platforms to be used to inform science policy development, to monitor data sharing practices and to steer funding prioritization for cohorts and data infrastructures themselves. In this way, the creation of data infrastructures is closely connected to the policy evolutions in the context of open science.