1. 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
12. “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
14. sage bionetworks
promote open systems, incentives, and norms
to redefine how complex biological data is
gathered, shared, and used
our approach
15. 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
31. 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
35. nearly 200 million smart phone users in US
insular health trackingmove beyond
36. 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
59. 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
60. 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
63. 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
69. 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.
70. 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
71. promote an ecosystem where
research is conducted
for others to consume
…
…
research parasites
…
…
74. mHealth research community
Sage Bionetworks joins The Scripps Research Institute (TSRI) for
PMI Cohort Program via Participant Technology Center (PTC)
06 July 2016
75. 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