CENDI wilbanks
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1. the policy
environment. it is not sufficient.
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“is it open?” is perhaps not the
right frame.
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accessibility
adaptability
leverage
ease of mastery
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accessibility
adaptability
leverage
ease of mastery
EASY TO USE NO OPEN LICENSE
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�17
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�19
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accessibility
adaptability
leverage
ease of mastery
NO OPEN LICENSE DOWNLOAD AVAILABLE DOCUMENTATION IN PDF
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2. doing research in the open: early returns. it is not sufficient.
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“how accurately can we predict if a female breast cancer survivor will develop a second tumor?”
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may the best (statistical) model win
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code sharing a prerequisite.
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accuracy of model jumped three orders of magnitude in nine days.
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�27
76% accurate.
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�28
(not a biologist)
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21 february 2013
17 april 2013
ongoing...
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SHOW ME THE CODE!
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if we don’t have the article in machinable form with rights to tranform? doesn’t happen.
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can we predict clinical utility from genetics of arthritis?
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can we predict scores on alzheimers cognitive tests from existing data?
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accessibility
adaptability
leverage
ease of mastery
0
25
25
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THREE OPTIONS TO DOWNLOAD NO CLEAR LICENSE PRIVACY RESTRICTIONS METADATA
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accessibility
adaptability
leverage
ease of mastery
IMPACT OF PRIVATE INTERVENTION
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68core projects
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248researchers
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28institutions
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1070datasets
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1723results
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Omberg, et al. Nature Gene*cs
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colorectal cancer subtyping
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A
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datasets subtypesanalysis groups
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A
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datasetsanalysis groups
G ...
subtypes
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analysis groups
G
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A
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datasetsanalysis groups
G ...
subtypes
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3. research and culture are
on a collision course, driven by data.
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tension between anonymity and utility.
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“more like plutonium than gold”
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tension between expectation and reuse.
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68% want their data shared for science
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tension between value of individual and value of
aggregate.
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$.50 to $2.50 for SSN, birthdate, etc.
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$5 to $15 for credit, background checks.
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~40 records for $2100
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tension between “research” data and
“consumer” data.
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it’s likely that we will end up with a data network
effect of some sort.
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a. the incremental institution.
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b. the walled garden.
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c. big networks of small things.
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