aahsl matheson lecture 2017
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11/3/2017Matheson Lecture
@wilbanks
When it was proclaimed that the Library contained all books, the first impression was one of extravagant happiness. All men felt themselves to be the masters of an intact and secret treasure. There was no personal or world problem whose eloquent solution did not exist in some hexagon. The universe was justified, the universe suddenly usurped the unlimited dimensions of hope.
other “official futures”
1. past health sciences
research
what happens when that’s all digital?
2. what’s broken open the health sciences
official future?
cheap data has changed our
politics.
cheap data changes how we
justify our opinions.
cheap data transgresses lots of things we expect…
privacy
property
exclusivity
authority.
and can we make cheap less toxic than it has been
to date?
3. an existence proof of
the open window.
Promote OPEN SYSTEMS, INCENTIVES, and NORMS to redefine how complex biological data is GATHERED,
SHARED, AND USED.
decentralizationthe process of redistributing or dispersing functions, powers, people, or things away from a central location or authority
wikipedia
pervasiveness of networked information
cloud infrastructure
democratization of research process
gov’t agencies and public pushing for > sharing
recruitment
data generation
data analysis
institutional silos
recruitment data generation data analysis
institutional silosbreaking down
recruitment data generation data analysis
institutional silosbreaking down
crc subtyping consortium
A
B
C
D
E
F
1
2
3
4
5
6
expert team data subtype
crc subtyping consortium
A
B
C
D
E
F
1
2
3
4
5
6
...
expert team data subtype
crc subtyping consortium
crc subtyping consortium
doi:10.1038/nm.3967
crc subtyping consortium
analytical challenges
unbiased, consistent, and rigorous method assessment
sampling of a space of diverse methods
predict survival for prostate cancer patients
analytical challenges
recruitment data generation data analysis
institutional silosbreaking down
recruitment data generation data analysis
institutional silosbreaking down
public / private partnership between NIH, 10 biopharmaceutical companies
and several non-profit organizations
accelerating medicines partnership
data generation data analysis|
($ 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
data generation data analysis|
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
data generation data analysis|
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
data generation data analysis|
CD2H
recruitment data generation data analysis
institutional silosbreaking down
recruitment data generation data analysis
institutional silosbreaking down
Healthmobile
Healthm
insular health trackingmove beyond
nearly 200 million smart phone users in US
insular health trackingmove beyond
2015 march
participant-centered 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
changeable by participant
first 6 months
16,585 participants consented
14,684 participants enrolled
9,520 agreed to ‘share broadly’
1,087 self reported PD diagnosis
recruitment
mPower
motor initiation gait/balance hypophonia memory
mPower
data generation
activities
six month data releasemPower
data generation
six month data releasemPowertask name type of task and
scheduleunique
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
data generation
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
study data released before any primary publication 60+ independent ‘qualified researchers’ working towards building a PD research community
products at scale, but non-corporate
products at scale, but non-corporate
libraries as essential partners
4.meet the new boss,
same as the old boss.
store contentorganize content
query content
we’re doing the same thing with library services.
“a group of volunteers connected by a global computer network will build for free and give away an encyclopedia
that displaces Britannica”
“cloud things can be disappeared instantly”
we’re doing the same thing with library services.
that’s bad.
5.we’re the ones who
need to articulate the new official futures.
a. incrementalism.
(this is arguably off the table)
b. the stacks.
c.small but compatibly
communicating groups
but we can’t do it if we have to be dependent on
the stacks.
look to metaphors and models beyond the startup
@McDapper
The impious maintain that nonsense is normal in the Library and that the reasonable (and even humble and pure coherence) is an almost miraculous exception.
at stake is who gets to construct meaning.
thank you
@wilbanks john.wilbanks@sagebase.org
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