Hitrd wilbanks may 2013
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prelude: how to spend a billion dollars.
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Transcript of Hitrd wilbanks may 2013
prelude:how to spend a billion
dollars.
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assume 1,000,000 downloadsassume 10% false positive rate
100,000 doctor visits$1000 per biopsy
1. research v. “citizen”is bad for research.
"There is no reason anyone would want a computer in their home."
Ken Olsen, founder of Digital Equipment Corporation, 1977
2010: <10,000
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research + “citizen”is good for research.
2. integrating (most) patient data is (mostly)
incoherent.
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/
collaborations on coherent data are proven
to create value.
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3. collaboration implies new forms of governance.
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Synapse Data Use Condi4ons Training
• Link on Synapse home page
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PLC: “portable” legal consent
populate the open layer.
terms in blue pop up definitions
volunteer must click to proceed
all boxes must be checked
volunteer cannot skip video
~600 enrolled~65% contributing
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4. building on the experience.
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“modules” by class of data
interoperable “sandbox” consent
scalable economic incentives to behave.
moving PLC to an open consent standard.
patient
emailpatient #XYZ123
researcher
Individual Level Data
De-‐iden4fiedDataset
Sage BionetworksCGRE
Portable Legal Consent
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Par4cipants
Researchers
CGRE Database Synapse Database
Advocacy Founda4on
HospitalAdvocacy Founda4on
Portable Legal Consent
Public Recruitment
Sage BionetworksSynapse
Portable Legal Consent
1 2 3
Par4cipants
Advocacy Founda4on
HospitalAdvocacy Founda4on
