20160811 big data for health and medicine
TRANSCRIPT
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brian m. bot | principal scientist |
2016 aug 11
sage bionetworks
big data for health and medicine
biomedical research in an increasingly digital world
| @BrianMBot
university of nebraska at omaha
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biomedical research in an increasingly digital world
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biomedical research in an increasingly digital world
production
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biomedical research in an increasingly digital world
distribution
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biomedical research in an increasingly digital world
aggregation
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biomedical research in an increasingly digital world
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biomedical research in an increasingly digital world
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biomedical research in an increasingly digital world
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biomedical research in an increasingly digital world
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biomedical research in an increasingly digital world
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6%
21%
8%
11%
54%cannotreproduce
can reproduce in principle
can reproduce w/discrepancies
can reproduce from processed data w/discrepancies
can reproduce partially
the status quo tolerates poor communication of findings
Ioannidis A. et al. Nature Genetics 2009
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“Scientists often study the past as obsessively as historians because few
other professions depend so acutely on it. Every experiment is a conversation with
a prior experiment, every new theory a refutation of the old”
-Siddhartha Mukherjee, The Emperor of All Maladies
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sage bionetworks
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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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CRC Subtyping Consortium
DREAM ChallengesProgenitor Cell Biology Consortium
TCGA Pan-Cancer Consortium
CommonMind Consortium
PsychENCODE
Accelerating Medicines Partnership
Resilience Project
M2OVE-AD Consortium
Dengue FeverLINCS project
Oncology Molecular ClassifiersNext Gen Scientific Publishing
Mozilla Science Labs
sage bionetworks
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public / private partnership between NIH, 10 biopharmaceutical companies
and several non-profit organizations
Accelerating Medicines Partnership
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($ Millions) Total Project Total NIH Total
IndustryAlzheimer’s
Disease 129.5 67.6 61.9
Type 2 Diabetes 58.4 30.4 28
Rheumatoid Arthritis 41.6 20.9 20.7
TOTAL 229.5 118.9 110.6
Accelerating Medicines Partnership
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Target Discovery
Target Discovery
Target Discovery
Target Discovery
Target Validation
Target Validation
Target Validation
Target Validation
Shared Information for
Target Identification
coordinate sharing of early-phasetarget identification insights
Accelerating Medicines Partnership
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AMP-AD Collaborative
Workspace
Quarterly Depositions
Broad/RUSH
Mt. Sinai
U Fl/ISB/Mayo
Emory
Sage
Other Partners
Individual Partner Workspaces AMP-AD Data Portal
Consortium Space
Public space
AMP-AD Synapse Project Structure
Accelerating Medicines Partnership
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CRC Subtyping Consortium
DREAM ChallengesProgenitor Cell Biology Consortium
TCGA Pan-Cancer Consortium
CommonMind Consortium
PsychENCODE
Accelerating Medicines Partnership
Resilience Project
Dengue FeverLINCS project
Oncology Molecular ClassifiersNext Gen Scientific Publishing
Mozilla Science Labs
sage bionetworks
M2OVE-AD Consortium
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analysis of: 12 tumor types 6 molecular profiling platforms
TCGA Pan-Cancer Consortium
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18NPG papers
68core projects248
researchers
28institutions
1070datasets1723
results
TCGA Pan-Cancer Consortium
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TCGA Pan-Cancer Consortium
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CRC Subtyping Consortium
DREAM ChallengesProgenitor Cell Biology Consortium
TCGA Pan-Cancer Consortium
CommonMind Consortium
PsychENCODE
Accelerating Medicines Partnership
Resilience Project
Dengue FeverLINCS project
Oncology Molecular ClassifiersNext Gen Scientific Publishing
Mozilla Science Labs
sage bionetworks
M2OVE-AD Consortium
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CRC Subtyping Consortium
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A
B
C
D
E
F
1
2
3
4
5
6
expert team data subtype
CRC Subtyping Consortium
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A
B
C
D
E
F
1
2
3
4
5
6
...
expert team data subtype
CRC Subtyping Consortium
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CRC Subtyping Consortium
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doi:10.1038/nm.3967 doi:10.7303/syn2623706
CRC Subtyping Consortium
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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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Healthmobile
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Healthm
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insular health trackingmove beyond
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nearly 200 million smart phone users in US
insular health trackingmove beyond
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insular health trackingmove beyond
Stephen Lam / Getty
Tech giants moving into health may widen inequalities and harm research, unless people can access and share their data, warn John T. Wilbanks and Eric J. Topol.
(but be careful)
20 july 2016
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>75%
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how to balance desire to share w/ importance of privacy?
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2013 september
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2015 march
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the hype cycle
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the hype cyclelaunching
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participant-centered consent
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changeable by participant
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~75k participants across all studies
>70% opted to share broadly
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50
mPower
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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
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motor initiation gait/balance hypophonia memory
mPower activities
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x
yz
userAcceleration
gravity
rotationRate
attitude
device motion readings at 100 hz
gait / balance
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gait / balance
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Monty Python's The Flying Circus
gait / balance
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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
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mPower six month data release
task name type of task and schedule
unique participants unique tasks
demographics survey - once 6,805 6,805
MDS-UPDRS survey - monthly 2,024 2,305
PDQ8 survey - monthly 1,334 1,641
memory activity - t.i.d. 968 8,569
tapping activity - t.i.d. 8,003 78,887
voice activity - t.i.d. 5,826 65,022
walking activity - t.i.d. 3,101 35,410
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mHealth research communityParkinson
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mHealth research communityParkinson
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Parkinson’s Disease Foundation Eli Lilly AstraZeneca Apple Verily Intel Infocepts Posit Science
MIT The Ohio State University University of Otago University of Texas Health Science Center Istanbul Sehir University University of Iowa University of Virginia University of Toronto Johns Hopkins University Vanderbilt University University of Rochester McGill University Xi'an Jiaotong University University of Washington Harvard University
mHealth research communityParkinson
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mHealth research communityParkinson
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mHealth research communityParkinson
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mHealth research communityParkinson
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mHealth research communityParkinson
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promote an ecosystem whereresearch is conductedfor others to consume
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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.
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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”research parasites
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promote an ecosystem whereresearch is conductedfor others to consume
……
research parasites……
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promote an ecosystem whereresearch is conductedfor others to consume
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mHealth research community
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mHealth research community
Sage Bionetworks joins The Scripps Research Institute (TSRI) for PMI Cohort Program via Participant Technology Center (PTC)
06 July 2016
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mHealth research community
Sage Bionetworks joins The Scripps Research Institute (TSRI) for PMI Cohort Program via Participant Technology Center (PTC)
In collaboration with Scripps Participant Technologies Center (PTC):
• Sage Bionetworks will be responsible for the patient consent and data governance, as well as the community outreach and participant engagement efforts of the PTC
• Sage Bionetworks will also be engaged in the scientific and engineering work to develop new methodologies for measuring symptoms of health and disease, including developing symptom measurements for phone, wearable, and other sensors
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riding the hype cycle
together
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brian m. bot———————— principal scientist community manager
[email protected] @BrianMBot
thank you
sage bionetworks