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research participation as a social contract

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research participation as a social contract

  1. 1. brian m. bot | @BrianMBot | principal scientist | community manager | 2016 sep 14 sage bionetworks international data forum research participation as a social contract
  2. 2. sage bionetworks promote open systems, incentives, and norms to redefine how complex biological data is gathered, shared, and used our approach
  3. 3. sage bionetworks engage diverse communities of researchers around biological and analytical problems too complex for a single institution our focus empower citizens to track their own health and contribute deep phenotypic data to research topics important to them
  4. 4. ResearchKit
  5. 5. mPower motor initiation gait/balance hypophonia memory
  6. 6. changeable by participant mPower participant-centered consent configurable secondary sharing
  7. 7. mPower ‘qualified researcher’ first pass register for a synapse account get a validated user profile become a certified synapse user submit an intended data use statement agree to the conditions for use download the data
  8. 8. mPower ‘qualified researcher’ first pass register for a synapse account get a validated user profile become a certified synapse user submit an intended data use statement agree to the conditions for use download the data 9,520 unique participants 8,320 completed at least one task 198,639 total activities and surveys completed 1,087 self reported parkinson diagnosis
  9. 9. mPower ‘qualified researcher’ first pass register for a synapse account get a validated user profile become a certified synapse user submit an intended data use statement agree to the conditions for use download the data seeding a community in PD research released before any primary publication 60+ independent ‘qualified researchers’
  10. 10. 2016 sep 14 international data forumresearch participation as a social contract brian m. bot ———————— principal scientist community manager sage bionetworks github: @brian-bot twitter: @BrianMBot thank you

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