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Let's Pool Our Medical Data

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Let's Pool Our Medical Data

  1. 1. three hypotheses.
  2. 2. hypothesis A:
  3. 3. cheap data changes the epistemology of fields.
  4. 4. what makes justified beliefs justified? http://plato.stanford.edu/entries/epistemology/
  5. 5. player x is a good hitter because
  6. 6. OPS = AB(H + BB + HBP) + TB(AB + BB + SF + HBP) / AB(AB + BB + SF + HBP)
  7. 7. fields based on narrative, but tested in reality, are very vulnerable to data-driven change.
  8. 8. information > gut models and metrics low transaction costs pissed off pundits
  9. 9. hypothesis B:
  10. 10. data is (becoming) cheap enough to drive epistemic change in health.
  11. 11. not just cheap, but potentially democratized.
  12. 12. not just democratized, but ubiquitous.
  13. 13. hypothesis C:
  14. 14. costs will not magically decline thanks to data.
  15. 15. 25
  16. 16. 26
  17. 17. 27
  18. 18. 28
  19. 19. 29
  20. 20. assume 1,000,000 downloads assume 10% false positive rate 100,000 doctor visits $1000 per biopsy
  21. 21. that s the setup.
  22. 22. sharing by small but coherent groups can create asymmetrically valuable resources.
  23. 23. small group sharing
  24. 24. coherentism from: standard legal tools common infrastructure norms metadata
  25. 25. proven to work in: software content
  26. 26. the experiment:
  27. 27. let s a small but coherent group to share data and see if it works in health.
  28. 28. http://opensnp.org/users/615
  29. 29. http://files.snpedia.com/reports/promethease_data/genome_jtw_ui2.html
  30. 30. Also there is no suggestion of consanguinity in your pedigree. http://www.ianlogan.co.uk/
  31. 31. http://sagebridge.org
  32. 32. 53
  33. 33. PLC: portable legal consent
  34. 34. terms in blue pop up definitions
  35. 35. all boxes must be checked volunteer must click to proceed
  36. 36. volunteer cannot skip video
  37. 37. http://weconsent.us/informed- consent/ 64
  38. 38. moving PLC to an open consent standard.
  39. 39. email patient #XYZ123 researcher patient
  40. 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. 41. 3 Portable  Legal  Consent 2 Advocacy   Advocacy   Founda3on Hospital Founda3on Par3cipants 1
  42. 42. 71
  43. 43. five clinical studies on Bridge this year under PLC.
  44. 44. it s likely that we will end up with a sharing monopoly of some sort.
  45. 45. once entrenched, hard to move.
  46. 46. once entrenched, hard to move.
  47. 47. tendency to increment.
  48. 48. a. just like now, but moreso
  49. 49. b. the cartel.
  50. 50. c. the commons.
  51. 51. only the last choice allows all three choices to exist.
  52. 52. thank you @wilbanks john.wilbanks@sagebase.org

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