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