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Let's Pool Our Medical Data
 

Let's Pool Our Medical Data

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My lecture at the Broad Institute on 1/10/13. Online at http://www.youtube.com/watch?v=ACL01EkqleY

My lecture at the Broad Institute on 1/10/13. Online at http://www.youtube.com/watch?v=ACL01EkqleY

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    Let's Pool Our Medical Data Let's Pool Our Medical Data Presentation Transcript

    • 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 costs pissed off pundits
    • hypothesis B:
    • data is (becoming) cheapenough to drive epistemic change in health.
    • not just cheap, butpotentially democratized.
    • not just democratized, but ubiquitous.
    • hypothesis C:
    • costs will not magicallydecline thanks to data.
    • 25
    • 26
    • 27
    • 28
    • 29
    • assume 1,000,000 downloadsassume 10% false positive rate 100,000 doctor visits $1000 per biopsy
    • that s the setup.
    • sharing by small butcoherent groups cancreate asymmetrically valuable resources.
    • small group sharing
    • coherentism from: standard legal toolscommon infrastructure norms metadata
    • proven to work in: software content
    • the experiment:
    • let s a small but coherent group toshare data and see if it works in health.
    • http://opensnp.org/users/615
    • http://files.snpedia.com/reports/promethease_data/genome_jtw_ui2.html
    • Also there is no suggestion ofconsanguinity in your pedigree.http://www.ianlogan.co.uk/
    • http://sagebridge.org
    • 53
    • PLC:portable legal consent
    • terms in blue pop up definitions
    • all boxes must be checked volunteer must click to proceed
    • volunteer cannot skip video
    • http://weconsent.us/informed- consent/ 64
    • moving PLC to an open consent standard.
    • email patient #XYZ123researcher patient
    • Public   Portable  Legal   Sage  Bionetworks Sage  Bionetworks Recruitment Consent CGRE Synapse Founda3on Advocacy   CGRE  Database Synapse  Database 1 2 Portable  Legal  Consent 3 4 5 Individual  Level   De-­‐iden3fied Hospital Data Dataset Researchers Founda3on Advocacy  Par3cipants
    • 3 Portable  Legal  Consent 2 Advocacy   Advocacy  Founda3on Hospital Founda3on Par3cipants 1
    • 71
    • five clinical studies onBridge this year under PLC.
    • it s likely that we willend 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.
    • thank you @wilbanksjohn.wilbanks@sagebase.org