prelude:
how to spend a billion
dollars.
3
4
5
6
7
assume 1,000,000 downloads
assume 10% false positive rate
100,000 doctor visits
$1000 per biopsy
1. research + “citizen”
is good for research.
https://www.scienceexchange.com/
2. integrating (most)
patient data is (mostly)
incoherent.
http://opensnp.org/users/615
http://files.snpedia.com/reports/promethease_data/genome_jtw_ui2.html
collaborations on
coherent data are proven
to create value.
23
24
3. collaboration implies
new forms of governance.
PLC:
“portable” legal consent
populate the open layer.
terms in blue pop up definitions
volunteer must click to proceed
all boxes must be checked
volunteer cannot skip video
~1000 enrolled
~65% contributing
35
36
37
38
4. building on the
experience.
40
patient
email
patient
#XYZ123
researcher
interoperable “sandbox”
consent
scalable incentives to
behave.
join the conversation
john.wilbanks@sagebase.org
wilbanks@nitrd.gov
Barcelona wilbanks 2013
Barcelona wilbanks 2013
Barcelona wilbanks 2013
Barcelona wilbanks 2013
Barcelona wilbanks 2013
Barcelona wilbanks 2013
Barcelona wilbanks 2013
Barcelona wilbanks 2013
Barcelona wilbanks 2013
Barcelona wilbanks 2013
Barcelona wilbanks 2013
Barcelona wilbanks 2013
Barcelona wilbanks 2013
Barcelona wilbanks 2013
Barcelona wilbanks 2013
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Barcelona wilbanks 2013

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Transcript of "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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