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Barcelona wilbanks 2013
 

Barcelona wilbanks 2013

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    Barcelona wilbanks 2013 Barcelona wilbanks 2013 Presentation Transcript

    • prelude: how to spend a billion dollars.
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    • assume 1,000,000 downloads assume 10% false positive rate 100,000 doctor visits $1000 per biopsy
    • 1. research + “citizen” is good for research.
    • https://www.scienceexchange.com/
    • 2. integrating (most) patient data is (mostly) incoherent.
    • http://opensnp.org/users/615
    • http://files.snpedia.com/reports/promethease_data/genome_jtw_ui2.html
    • collaborations on coherent data are proven to create value.
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    • 3. collaboration implies new forms of governance.
    • 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
    • ~1000 enrolled ~65% contributing
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    • 4. building on the experience.
    • 40
    • patient email patient #XYZ123 researcher
    • interoperable “sandbox” consent
    • scalable incentives to behave.
    • join the conversation john.wilbanks@sagebase.org wilbanks@nitrd.gov