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

12 Pages Posted: 17 Jan 2020 Last revised: 19 Jan 2020

See all articles by Shira Grayson

Shira Grayson

Sage Bionetworks

Christine Suver

Sage Bionetworks

John Wilbanks

Sage Bionetworks

Megan Doerr

Sage Bionetworks

Date Written: December 11, 2019

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

Suggested Citation

Grayson, Shira and Suver, Christine and Wilbanks, John and Doerr, Megan, Open Data Sharing in the 21st Century: Sage Bionetworks’ Qualified Research Program and Its Application in mHealth Data Release (December 11, 2019). Available at SSRN: https://ssrn.com/abstract=3502410 or http://dx.doi.org/10.2139/ssrn.3502410

Shira Grayson

Sage Bionetworks ( email )

1100 Fairview Ave. N.
Mailstop M1-C108
Seattle, WA 98109
United States

Christine Suver

Sage Bionetworks ( email )

1100 Fairview Ave. N.
Mailstop M1-C108
Seattle, WA 98109
United States

John Wilbanks

Sage Bionetworks ( email )

1100 Fairview Ave. North
Seattle, WA 98109
United States

Megan Doerr (Contact Author)

Sage Bionetworks ( email )

1100 Fairview Ave. N.
Mailstop M1-C108
Seattle, WA 98109
United States

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