Let's Pool Our Medical Data
Upcoming SlideShare
Loading in...5

Let's Pool Our Medical Data



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



Total Views
Views on SlideShare
Embed Views



1 Embed 10

https://twitter.com 10



Upload Details

Uploaded via as Adobe PDF

Usage Rights

CC Attribution-ShareAlike LicenseCC Attribution-ShareAlike License

Report content

Flagged as inappropriate Flag as inappropriate
Flag as inappropriate

Select your reason for flagging this presentation as inappropriate.

  • Full Name Full Name Comment goes here.
    Are you sure you want to
    Your message goes here
Post Comment
Edit your comment

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. View slide
  • what makes justified beliefs justified? http://plato.stanford.edu/entries/epistemology/ View slide
  • 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