Barcelona wilbanks 2013

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Barcelona wilbanks 2013

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

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