Cochrane Tech: The Wider Context

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John Wilbanks, from #CochraneTech Symposium, Québec 2013

John Wilbanks, from #CochraneTech Symposium, Québec 2013

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  • 1. 1. cheap data changes the epistemology.
  • 2. OPS = AB(H + BB + HBP) + TB(AB + BB + SF + HBP) / AB(AB + BB + SF + HBP)
  • 3. opening data attempts to reflect the epistemology.
  • 4. 2. we’re going to have to share.
  • 5. “capacity to produce unanticipated change through unfiltered contributions from broad and varied audiences”
  • 6. accessibility adaptability leverage ease of mastery
  • 7. accessibility adaptability leverage ease of mastery
  • 8. accessibility adaptability leverage ease of mastery
  • 9. accessibility adaptability leverage ease of mastery
  • 10. accessibility adaptability leverage ease of mastery
  • 11. 2. systematically increasing the generativity of data sets.
  • 12. accessibility adaptability leverage ease of  mastery 0 25 25 25 25 THREE  OPTIONS  TO  DOWNLOAD NO  CLEAR  LICENSE PRIVACY  RESTRICTIONS METADATA
  • 13. which patients have tumor and normal samples amidst a group of celfiles?
  • 14. accessibility adaptability leverage ease of  mastery IMPACT  OF  PRIVATE  INTERVENTION
  • 15. 3. research + “citizen” is also coming our way.
  • 16. integrating (most) patient data is (mostly) non- generative.
  • 17. http://opensnp.org/users/615
  • 18. http://files.snpedia.com/reports/promethease_data/genome_jtw_ui2.html
  • 19. collaborations on generative data are proven to be possible.
  • 20. 37
  • 21. 39
  • 22. 4. collaboration implies new forms of governance.
  • 23. portable legal consent populate the open layer
  • 24. terms in blue pop up definitions
  • 25. volunteer must click to proceed all boxes must be checked
  • 26. volunteer cannot skip video
  • 27. ~1500 enrolled ~65% contributing
  • 28. 49
  • 29. 50
  • 30. 51
  • 31. patient email patient #XYZ123 researcher
  • 32. coda: if we get it wrong...
  • 33. 56
  • 34. assume 1,000,000 downloads assume 10% false positive rate 100,000 doctor visits $1000 per biopsy
  • 35. john.wilbanks@sagebase.org wilbanks@nitrd.gov @wilbanks