1.
cheap data changes the
epistemology.
OPS = AB(H + BB + HBP) +
TB(AB + BB + SF + HBP) /
AB(AB + BB + SF + HBP)
opening data attempts to
reflect the epistemology.
2.
we’re going to have to share.
“capacity to produce unanticipated
change through unfiltered contributions
from broad and varied audiences”
accessibility
adaptability
leverage
ease
of mastery
accessibility
adaptability
leverage
ease
of mastery
accessibility
adaptability
leverage
ease
of mastery
accessibility
adaptability
leverage
ease
of mastery
accessibility
adaptability
leverage
ease
of mastery
2.
systematically increasing the
generativity of data sets.
accessibility
adaptability
leverage
ease
of	
  mastery
0
25
25
25
25
THREE	
  OPTIONS	
  TO	
  DOWNLOAD
NO	
  CLEAR	
  LIC...
which patients have tumor and normal
samples amidst a group of celfiles?
accessibility
adaptability
leverage
ease
of	
  mastery
IMPACT	
  OF	
  PRIVATE	
  INTERVENTION
3.
research + “citizen”
is also coming our way.
integrating (most) patient
data is (mostly) non-
generative.
http://opensnp.org/users/615
http://files.snpedia.com/reports/promethease_data/genome_jtw_ui2.html
collaborations on
generative data are
proven to be possible.
37
39
4.
collaboration implies new
forms of governance.
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
~1500 enrolled
~65% contributing
49
50
51
patient
email
patient
#XYZ123
researcher
coda:
if we get it wrong...
56
assume 1,000,000 downloads
assume 10% false positive rate
100,000 doctor visits
$1000 per biopsy
john.wilbanks@sagebase.org
wilbanks@nitrd.gov
@wilbanks
Cochrane Tech: The Wider Context
Cochrane Tech: The Wider Context
Cochrane Tech: The Wider Context
Cochrane Tech: The Wider Context
Cochrane Tech: The Wider Context
Cochrane Tech: The Wider Context
Cochrane Tech: The Wider Context
Cochrane Tech: The Wider Context
Cochrane Tech: The Wider Context
Cochrane Tech: The Wider Context
Cochrane Tech: The Wider Context
Cochrane Tech: The Wider Context
Cochrane Tech: The Wider Context
Cochrane Tech: The Wider Context
Cochrane Tech: The Wider Context
Cochrane Tech: The Wider Context
Cochrane Tech: The Wider Context
Cochrane Tech: The Wider Context
Cochrane Tech: The Wider Context
Cochrane Tech: The Wider Context
Cochrane Tech: The Wider Context
Cochrane Tech: The Wider Context
Cochrane Tech: The Wider Context
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Cochrane Tech: The Wider Context

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John Wilbanks, from #CochraneTech Symposium, Québec 2013

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Cochrane Tech: The Wider Context

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