20160914 - International Data Week

1. brian m. bot | @BrianMBot | principal scientist | community manager |
2016 sep 14
sage bionetworks
international data forum
research participation
as a social contract

2. sage bionetworks
promote open systems, incentives, and norms
to redefine how complex biological data is
gathered, shared, and used
our approach

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. ResearchKit

5. mPower
motor initiation gait/balance hypophonia memory

6. changeable by participant
mPower
participant-centered consent configurable secondary sharing

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. 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. 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. 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