three hypotheses.
hypothesis A:
cheap data changes the epistemology of fields.
“what makes justified beliefs justified?”
http://plato.stanford.edu/entries/epistemology/
player x is a good hitter because
OPS = AB(H + BB + HBP) + TB(AB + BB + SF + HBP) / AB(AB + BB + SF + HBP)
fields based on narrative, but tested in reality, are very vulnerable to data-driven
change.
information > “gut”models and metricslow transaction costspissed off pundits
hypothesis B:
data is (becoming) cheap enough to drive epistemic
change in health.
not just cheap, but potentially democratized.
not just democratized, but ubiquitous.
hypothesis C:
costs will not magically decline thanks to data.
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26
27
28
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assume 1,000,000 downloadsassume 10% false positive rate
100,000 doctor visits$1000 per biopsy
that’s the setup.
sharing by small but coherent groups can create asymmetrically valuable resources.
small group sharing
coherentism from:
standard legal toolscommon infrastructure
normsmetadata
proven to work in:softwarecontent
the experiment:
let’s a small but coherent group to
share data and see if it works in health.
http://files.snpedia.com/reports/promethease_data/genome_jtw_ui2.html
“Also there is no suggestion of consanguinity in your pedigree.”
http://www.ianlogan.co.uk/
53
PLC: “portable” legal consent
terms in blue pop up definitions
volunteer must click to proceed
all boxes must be checked
volunteer cannot skip video
http://weconsent.us/informed-consent/
64
moving PLC to an open consent standard.
patient
emailpatient
#XYZ123
researcher
Individual Level Data
De-‐iden3fiedDataset
Sage BionetworksCGRE
Portable Legal Consent
1 2 3 4 5
Par3cipants
Researchers
CGRE Database Synapse Database
Advocacy Founda3on
HospitalAdvocacy Founda3on
Portable Legal Consent
Public Recruitment
Sage BionetworksSynapse
Portable Legal Consent
1 2 3
Par3cipants
Advocacy Founda3on
HospitalAdvocacy Founda3on
71
five clinical studies on Bridge this year under
PLC.
it’s likely that we will end up with a sharing monopoly of some
sort.
once entrenched, hard to move.
once entrenched, hard to move.
tendency to increment.
a. “just like now, but moreso”
b. the cartel.
c. the commons.
only the last choice allows all three choices to exist.
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