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       Rec...
3       Portable	  Legal	  Consent                2 Advocacy	                            Advocacy	  Founda3on            H...
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
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
Let's Pool Our Medical Data
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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

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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 metricslow transaction costs pissed off pundits
  9. 9. hypothesis B:
  10. 10. data is (becoming) cheapenough to drive epistemic change in health.
  11. 11. not just cheap, butpotentially democratized.
  12. 12. not just democratized, but ubiquitous.
  13. 13. hypothesis C:
  14. 14. costs will not magicallydecline thanks to data.
  15. 15. 25
  16. 16. 26
  17. 17. 27
  18. 18. 28
  19. 19. 29
  20. 20. assume 1,000,000 downloadsassume 10% false positive rate 100,000 doctor visits $1000 per biopsy
  21. 21. that s the setup.
  22. 22. sharing by small butcoherent groups cancreate asymmetrically valuable resources.
  23. 23. small group sharing
  24. 24. coherentism from: standard legal toolscommon infrastructure norms metadata
  25. 25. proven to work in: software content
  26. 26. the experiment:
  27. 27. let s a small but coherent group toshare 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 ofconsanguinity 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 #XYZ123researcher 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 onBridge this year under PLC.
  44. 44. it s likely that we willend 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 @wilbanksjohn.wilbanks@sagebase.org
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