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Participant-centered research in a rocky data sharing climate

Sage Bionetworks is a non-profit research organization dedicated to accelerating the pace of biomedical research. It is our perspective that innovation and life saving advances have been hamstrung by lack of access to research data. We feel that research participants, as data donors, are the ones who should own and control if and how their data is shared.

However, data sharing is causing considerable conversation across the biomedical research community. Researchers are rarely professionally recognized or compensated for sharing data. However, when funders provide incentives we have found that many scientists are up for the challenge. As such, we have created a data sharing path rooted in practical application which we hope will be useful for other ResearchKit studies.

In March 2015, we launched the mPower Parkinson Study: an observational study designed to remotely quantify daily changes in symptoms of Parkinson Disease (PD). During the first six months of mPower 12,201 participants completed the consent and enrollment process, a scale never before seen in PD research. 9,520 (78%) participants opted to share their data broadly with qualified researchers, including over 1,000 who self-reported a Parkinson diagnosis. Earlier this year, we made the data available worldwide, and published an article in Nature Scientific Data describing the study’s methodology and data in detail.

Since the data release, more than 50 researchers from 14 countries and 5 continents have requested and been granted access to the mPower data. These researchers are the first of a growing community collectively contributing to our understanding of how PD symptoms can be remotely tracked and managed over time. We hope that researchers will rise to match the generosity of the study participants who have shared their data by joining forces to accelerate the insights gleaned from these data.

Brian M. Bot, Sage Bionetworks mPower Research Team