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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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  • 1. three hypotheses.
  • 2. hypothesis A:
  • 3. cheap data changes the epistemology of fields.
  • 4. what makes justified beliefs justified? http://plato.stanford.edu/entries/epistemology/
  • 5. player x is a good hitter because
  • 6. OPS = AB(H + BB +HBP) + TB(AB + BB + SF+ HBP) / AB(AB + BB +SF + HBP)
  • 7. fields based on narrative, but tested in reality, are very vulnerable to data-driven change.
  • 8. information > gut models and metricslow transaction costs pissed off pundits
  • 9. hypothesis B:
  • 10. data is (becoming) cheapenough to drive epistemic change in health.
  • 11. not just cheap, butpotentially democratized.
  • 12. not just democratized, but ubiquitous.
  • 13. hypothesis C:
  • 14. costs will not magicallydecline thanks to data.
  • 15. 25
  • 16. 26
  • 17. 27
  • 18. 28
  • 19. 29
  • 20. assume 1,000,000 downloadsassume 10% false positive rate 100,000 doctor visits $1000 per biopsy
  • 21. that s the setup.
  • 22. sharing by small butcoherent groups cancreate asymmetrically valuable resources.
  • 23. small group sharing
  • 24. coherentism from: standard legal toolscommon infrastructure norms metadata
  • 25. proven to work in: software content
  • 26. the experiment:
  • 27. let s a small but coherent group toshare data and see if it works in health.
  • 28. http://opensnp.org/users/615
  • 29. http://files.snpedia.com/reports/promethease_data/genome_jtw_ui2.html
  • 30. Also there is no suggestion ofconsanguinity in your pedigree.http://www.ianlogan.co.uk/
  • 31. http://sagebridge.org
  • 32. 53
  • 33. PLC:portable legal consent
  • 34. terms in blue pop up definitions
  • 35. all boxes must be checked volunteer must click to proceed
  • 36. volunteer cannot skip video
  • 37. http://weconsent.us/informed- consent/ 64
  • 38. moving PLC to an open consent standard.
  • 39. email patient #XYZ123researcher patient
  • 40. 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
  • 41. 3 Portable  Legal  Consent 2 Advocacy   Advocacy  Founda3on Hospital Founda3on Par3cipants 1
  • 42. 71
  • 43. five clinical studies onBridge this year under PLC.
  • 44. it s likely that we willend up with a sharing monopoly of some sort.
  • 45. once entrenched, hard to move.
  • 46. once entrenched, hard to move.
  • 47. tendency to increment.
  • 48. a. just like now, but moreso
  • 49. b. the cartel.
  • 50. c. the commons.
  • 51. only the last choice allows all three choices to exist.
  • 52. thank you @wilbanksjohn.wilbanks@sagebase.org