seattle-denver va center for innovation
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brian m. bot | principal scientist |
2016 april 08
sage bionetworks
va seattle-denver center of innovation
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 researchwill fundamentally change to be more open and collaborative
supports communities of researchers working collaboratively across disciplines
our approach
sage bionetworks
Wisdom'of'the'crowd'
Ci0zen'engagement'Data'sharing'
Open'Collabora0ve'Research'
Gamifica0on'
Community'Development'
Consor0a'/'Federa0on'
sage bionetworks
CRC Subtyping Consortium
DREAM ChallengesProgenitor Cell Biology Consortium
TCGA Pan-Cancer Consortium
CommonMind Consortium
PsychENCODE
Accelerating Medicines Partnership
Resilience Project
Influenza Vaccinations
Dengue FeverPsychosis Spectrum Disorder
Oncology Molecular ClassifiersNext Gen Scientific Publishing
Mozilla Science Labs
sage bionetworks
Accelerating Medicines Partnership
public / private partnership between NIH, 10 biopharmaceutical companies
and several non-profit organizations
CRC Subtyping Consortium
DREAM ChallengesProgenitor Cell Biology Consortium
TCGA Pan-Cancer Consortium
CommonMind Consortium
PsychENCODE
Accelerating Medicines Partnership
Resilience Project
Influenza Vaccinations
Dengue FeverPsychosis Spectrum Disorder
Oncology Molecular ClassifiersNext Gen Scientific Publishing
Mozilla Science Labs
sage bionetworks
TCGA Pan-Cancer Consortium
18NPG papers
68core projects248
researchers
28institutions
1070datasets1723
results
CRC Subtyping Consortium
DREAM ChallengesProgenitor Cell Biology Consortium
TCGA Pan-Cancer Consortium
CommonMind Consortium
PsychENCODE
Accelerating Medicines Partnership
Resilience Project
Influenza Vaccinations
Dengue FeverPsychosis Spectrum Disorder
Oncology Molecular ClassifiersNext Gen Scientific Publishing
Mozilla Science Labs
sage bionetworks
CRC Subtyping Consortium
CRC Subtyping Consortium
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
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
39
mPower
40
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
yz
userAcceleration
gravity
rotationRate
attitude
Gait/Balance
device motion readings at 100 hz
Gait/Balance
Gait/Balance
Gait/Balance
Monty Python's The Flying Circus
mPower six month data release
9,520 unique participants
8,320 completed at least one task
198,639 total activities and surveys completed
1,087 self reported parkinson diagnosis
Parkinson mHealth research community
Parkinson mHealth research community
Parkinson mHealth research community
Parkinson mHealth research community
Parkinson mHealth research community
Parkinson mHealth research community
Parkinson mHealth research community
Parkinson mHealth research community
Parkinson mHealth research community
Parkinson mHealth research community
Parkinson mHealth research community
promote an ecosystem whereresearch is conductedfor others to consume
promote an ecosystem whereresearch is conductedfor others to consume
………
promote an ecosystem whereresearch is conductedfor 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 whereresearch is conductedfor 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”
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)
calling all
sage bionetworks
“research parasites”
brian m. bot———————— principal scientist community manager
brian.bot@sagebase.org @BrianMBot
thank you
sage bionetworks
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