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brian m. bot | principal scientist |
2016 feb 01
sage bionetworks
hutch data science affinity group
smartphones and surveys and sensors,
oh my!
sage bionetworks
a non-profit organization which pilots a
variety of components that are necessary
to build a scientific research commons
focused on a world where biomedical research
will fundamentally change to be
more open and collaborative
supports communities of researchers
working collaboratively across disciplines
our approach
Wisdom'of'the'crowd'
Ci0zen'engagement'
Data'sharing'
Open'
Collabora0ve'
Research'
Gamifica0on'
Community'Development'
Consor0a'/'Federa0on'
sage bionetworks
Healthmobile
Healthm
move beyond insular health tracking
move beyond insular health tracking
nearly 200 million smart phone users in US
>75%
how to balance desire to share w/
importance of privacy?
the beginnings of an open ecosystem in mHealth
stephen friend - president and cofounder, sage bionetworkseric schadt - cofounder and board member, sage bionetworks
participant
centered
consent
open source toolkit
participant-centered consent
http://sagebase.org/pcc
participant-centered consent
current consents:
written by a doctor
reviewed by a lawyer
edited by a committee
participant-centered consent
put the ‘informed’ back into informed consent
1. tiered information access by
participants

2. ‘pictorial’ dominant on first information
tier

3. text dominant on second information
tier

4. require perfect score on short
assessment
participant-centered consent
participant-centered consent
participant-centered consent
participant-centered consent
radical honesty > radical restrictions
changeable by participant
the beginnings of open ecosystem in mHealth
balance the security settings of
the system with the desires of
those being studied
the beginnings of open ecosystem in mHealth
‘qualified researcher’ first pass
1. register for a synapse account
2. get a validated user profile
3. become a certified synapse user
4. submit an intended data use statement
5. agree to the data-specific conditions for use
6. download the data
~75k participants across all studies
>70% opted to share broadly
30
mPower
31
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
Standard
Structured Activities
Passive Measures
• High Friction (long, infrequent)
• Validated in large cohorts
• Basis for most publications
• Mild Friction (more frequent)
• Minimal validation
• Minimal Friction
• Not validated
mPower
Passive
Measures
GPS -
Displacement
Vectors
GPS -
Displacement
Vectors
- -
Structured
Activities
Tapping
Activity
Walking/
Standing
Activity
Voice Activity
Memory
Game
Surveys
MDS-UPDRS
PDQ8
MDS-UPDRS
PDQ8
MDS-UPDRS
PDQ8
MDS-UPDRS
PDQ8
four symptoms of PD
Motor
Initiation
Gait/Balance Hypophonia Memory
Motor
Initiation
Gait/Balance Hypophonia Memory
mPower activities
Gait/Balance
x
y
z
userAcceleration
gravity
rotationRate
attitude
Gait/Balance
device motion readings at 100 hz
Gait/Balance
Gait/Balance
Gait/Balance
Monty Python's The Flying Circus
Synapse - building communities of researchers
Synapse - building communities of researchers
Synapse - building communities of researchers
Synapse - building communities of researchers
Synapse - building communities of researchers
Synapse - building communities of researchers
promote an ecosystem where
research is conducted
for others to consume
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
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
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”
“research parasites”
(oh my)
“research parasites”calling all
sage bionetworks
brian m. bot
————————
principal scientist
community manager
brian.bot@sagebase.org
@BrianMBot
thank you
sage bionetworks

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