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Mozilla Science Labs Berlin Meetup
Brian Bot discusses the beginnings of an open ecosystem in mobile health (mHealth) research. Sage Bionetworks, a non-profit focused on open and collaborative biomedical research, aims to balance sharing data with participant privacy through participant-centered consent. Their mPower study had over 16,000 consented participants who opted to broadly share their data over 70% of the time. Some researchers worry this open approach could enable "research parasites" who use other researchers' data without contributing to the original study. Overall, the goal is to promote a research ecosystem where data can be openly shared and consumed by others.
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- 1. brian m. bot| principal scientist | the beginnings of an open ecosystem in 2015 feb 4 sage bionetworks mHealth mozilla science labs meetup
- 2. sage bionetworks a non-profitorganization focused on a world where biomedical research will fundamentally change to be more open and collaborative our approach
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- 6. how to balancedesire to share w/ importance of privacy?
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- 9. participant-centered consent current consents: writtenby a doctor reviewed by a lawyer edited by a committee
- 10. participant-centered consent put the‘informed’ back into informed consent
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- 12. radical honesty >radical restrictions
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- 14. the beginnings ofopen ecosystem in mHealth balance the security settings of the system with the desires of those being studied
- 15. ~75k participants acrossall studies >70% opted to share broadly
- 16. 16 48,104 downloads fromapp store - first six months 16,585 participants consented 14,684 participants enrolled 9,520 agreed to ‘share broadly’ 1,087 self reported a professional diagnosis of Parkinson mPower
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- 18. Synapse - buildingcommunities of researchers
- 19. Synapse - buildingcommunities of researchers
- 20. promote an ecosystemwhere research is conducted for others to consume
- 21. A second concernheld by some is that a new class of research person will emerge — people who had nothing to do with the design and execution of the study but use another group’s data for their own ends, possibly stealing from the research productivity planned by the data gatherers, or even use the data to try to disprove what the original investigators had posited. promote an ecosystem where research is conducted for others to consume
- 22. promote an ecosystemwhere research is conducted for others to consume There is concern among some front-line researchers that the system will be taken over by what some researchers have characterized as “research parasites”
- 23. There is concernamong some front-line researchers that the system will be taken over by what some researchers have characterized as “research parasites” promote an ecosystem where research is conducted for others to consume
- 24. There is concernamong some front-line researchers that the system will be taken over by what some researchers have characterized as “research parasites”“research parasites”
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- 26. “research parasites”calling all sagebionetworks
- 27. brian m. bot ———————— principalscientist community manager brian.bot@sagebase.org @BrianMBot thank you sage bionetworks