Not everybody agreed to share their data broadly with the research community. Out of 14,684 verified participants 9,520 (65%) agreed to share broadly, the rest split between withdrawing from the study and agreeing to share narrowly with the team only:
|Figure 1: mPower study cohort description. From http://www.nature.com/articles/sdata201611#methods|
To provide proper safeguards and to balance sharing and privacy, the research team established a data governance structure. Access is granted to qualified researchers who agree to specific conditions for use, including the following:
- participants cannot be re-identified
- the data may not be redistributed
- findings need to be published in open access venues
- both participants and research team need to be acknowledged as data contributors
This effort is another example of the newly forming data sharing culture. And it uses Synapse that seems to make sharing easier from both technical and policy perspectives.