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Barcelona wilbanks 2013

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Transcript

  • 1. prelude: how to spend a billion dollars.
  • 2. 3
  • 3. 4
  • 4. 5
  • 5. 6
  • 6. 7
  • 7. assume 1,000,000 downloads assume 10% false positive rate 100,000 doctor visits $1000 per biopsy
  • 8. 1. research + “citizen” is good for research.
  • 9. https://www.scienceexchange.com/
  • 10. 2. integrating (most) patient data is (mostly) incoherent.
  • 11. http://opensnp.org/users/615
  • 12. http://files.snpedia.com/reports/promethease_data/genome_jtw_ui2.html
  • 13. collaborations on coherent data are proven to create value.
  • 14. 23
  • 15. 24
  • 16. 3. collaboration implies new forms of governance.
  • 17. PLC: “portable” legal consent populate the open layer.
  • 18. terms in blue pop up definitions
  • 19. volunteer must click to proceed all boxes must be checked
  • 20. volunteer cannot skip video
  • 21. ~1000 enrolled ~65% contributing
  • 22. 35
  • 23. 36
  • 24. 37
  • 25. 38
  • 26. 4. building on the experience.
  • 27. 40
  • 28. patient email patient #XYZ123 researcher
  • 29. interoperable “sandbox” consent
  • 30. scalable incentives to behave.
  • 31. join the conversation john.wilbanks@sagebase.org wilbanks@nitrd.gov