Open Data Sharing in the 21st Century: Sage Bionetworks’ Qualified Research Program and Its Application in mHealth Data Release

Abstract

Sage Bionetworks (Sage) has developed a framework for qualifying solvers from around the world for accessing health and biomedical data within Synapse, Sage’s data sharing and collaboration platform. We identified three conceptual mechanisms – transactional cost, exposure, and openness – to enable the broadest researcher pool access to health and biomedical research data for discovery while still encoding basic contractual protections for research participants. Our qualified researcher framework was first piloted in 2015 with data gathered from mPower, an observational smartphone-based study of Parkinson disease symptoms. Here we describe the rationale and features of the framework and its application in the exemplar mPower study.

Keywords: Open Science, Qualified Researcher, Sage Bionetworks, mHealth, Citizen Science