January 23, 2020

Democratizing data access

Democratizing data access

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

As a leading advocate for open science practices, informed consent, and data privacy in biomedical research, Sage actively pilots and tests innovative tools and resources to maximize the scientific value derived from datasets while still ensuring basic contractual protections for research participants. This paper details the rationale, features, and application of Sage’s novel framework for qualifying a diverse pool of solvers from around the world for accessing health and biomedical data within Synapse. The three conceptual mechanisms guiding the development of the framework—transactional cost, exposure, and openness— are identified and illustrated via the case example of mPower, the first study to pilot the qualified researcher framework in 2015. This paper concludes with a cross-sectional snapshot of the current pool of qualified researchers and reveals key challenges and future directions for optimizing the qualified researcher framework in the years to come.  

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