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Mozilla Science Labs Berlin Meetup

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Mozilla Science Labs Berlin Meetup

  1. 1. brian m. bot | principal scientist | the beginnings of an open ecosystem in 2015 feb 4 sage bionetworks mHealth mozilla science labs meetup
  2. 2. sage bionetworks a non-profit organization focused on a world where biomedical research will fundamentally change to be more open and collaborative our approach
  3. 3. >75%
  4. 4. how to balance desire to share w/ importance of privacy?
  5. 5. participant centered consent
  6. 6. participant-centered consent current consents: written by a doctor reviewed by a lawyer edited by a committee
  7. 7. participant-centered consent put the ‘informed’ back into informed consent
  8. 8. participant-centered consent
  9. 9. radical honesty > radical restrictions
  10. 10. changeable by participant
  11. 11. the beginnings of open ecosystem in mHealth balance the security settings of the system with the desires of those being studied
  12. 12. ~75k participants across all studies >70% opted to share broadly
  13. 13. 16 48,104 downloads from app 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
  14. 14. Motor Initiation Gait/Balance Hypophonia Memory mPower activities
  15. 15. Synapse - building communities of researchers
  16. 16. Synapse - building communities of researchers
  17. 17. promote an ecosystem where research is conducted for others to consume
  18. 18. A second concern held 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
  19. 19. promote an ecosystem where 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”
  20. 20. There is concern among 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
  21. 21. There is concern among some front-line researchers that the system will be taken over by what some researchers have characterized as “research parasites”“research parasites”
  22. 22. “research parasites”
  23. 23. “research parasites”calling all sage bionetworks
  24. 24. brian m. bot ———————— principal scientist community manager brian.bot@sagebase.org @BrianMBot thank you sage bionetworks

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