research participation as a social contract
TRANSCRIPT
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brian m. bot | @BrianMBot | principal scientist | community manager |
2016 sep 14
sage bionetworks
international data forum
research participationas a social contract
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sage bionetworks
promote open systems, incentives, and norms to redefine how complex biological data is
gathered, shared, and used
our approach
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sage bionetworks
engage diverse communities of researchersaround biological and analytical problems
too complex for a single institution
our focus
empower citizens to track their own healthand contribute deep phenotypic data to
research topics important to them
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ResearchKit
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mPowermotor initiation gait/balance hypophonia memory
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changeable by participant
mPowerparticipant-centered consent configurable secondary sharing
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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
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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
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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’
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2016 sep 14international data forumresearch participation
as a social contract
brian m. bot———————— principal scientist community manager sage bionetworks github: @brian-bot twitter: @BrianMBot
thank you