participant-centric research
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Sage Bionetworks Releases First-of-its-Kind Data from Parkinson’s iPhone Study
Sage Bionetworks, a nonprofit biomedical research organization, today released an unparalleled dataset that captures the everyday experiences of more than 9,500 people to help speed scientific progress toward treatments for people with Parkinson’s disease. The dataset, which consists of millions of data points collected on a nearly-continuous basis through the iPhone app mPower, will provide researchers with unprecedented insight into the daily changes in symptoms and effects of medication for people with Parkinson’s.
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Yes, You Can Reconcile The Wide Sharing Of Personal Medical Research Data With Greater Participant Control
Although the benefits of sharing big datasets are well-known, so are the privacy issues that can arise as a result. The tension between a desire to share information widely and the need to respect the wishes of those to whom it refers is probably most acute in the medical world. Although the hope is that aggregating health data on a large scale can provide new insights into diseases and their treatments, doing so makes issues of consent even trickier to deal with. A new study of Parkinson's disease from Sage Bionetworks, which describes itself as a "non-profit biomedical research organization," takes a particularly interesting approach. Unusually, it used an iPhone app to gather data directly from the participants...
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