Seminar series, Office of Responsible Research Training and Postdoctoral Affairs Conducting Research, Children's Hospital of Philadelphia.

1. 1.
enclosures and openings

5. http://genomemedicine.com/content/5/3/27

6. as much as 84% of the genes in the human genome
http://genomemedicine.com/content/5/3/27

14. and very little changes, very slowly.

15. (but if an iPhone bends, we are ON IT)

18. 2.
!
a new methodology for
research

19. not just solo labs, but
communities.

20. TCGA Pan-Cancer Consortium

21. TCGA Pan-Cancer Consortium

22. TCGA Pan-Cancer Consortium

23. TCGA Pan-Cancer Consortium

25. TCGA Pan-Cancer Consortium

27. TCGA Pan-Cancer Consortium
doi:10.7303/syn1710680.4

28. TCGA Pan-Cancer Consortium
N1PG 8papers 248 c6ore pr8ojects researchers 28 institutions 1070 datasets 1723 results

29. 29

30. 30
groups datasets subtypes
A
B
C
D
E
F
1
2
3
4
5
6

31. 31
A
B
C
D
E
F
1
2
3
4
5
6
G ...

32. not just solo labs, but
challenges.

34. code sharing a prerequisite.
http://synapse.org

35. accuracy of model
jumped three orders of
magnitude in nine days.

36. 76% accurate.
36

37. generated an entire suite of
available math models attacking
the problem.

38. 21 february 2013
17 april 2013
ongoing...

40. SHOW ME THE CODE!

41. ...

42. (all code is free as in beer and as
in freedom)
!
http://synapse.org
https://github.com/Sage-
Bionetworks/Synapse-Repository-
Services

44. not just solo labs, but
the general public.

50. how do we scale engagement
when our systems weren’t
built for it?

51. https://www.scienceexchange.com/

52. 3.
!
informed consent as vector
for scaling engagement

53. written by a doctor
edited by a lawyer
re-edited by a committee
presented to a participant
for zero-sum game

54. written by a doctor
edited by a lawyer
re-edited by a committee
presented to a participant
for zero-sum game

55. comprehension
language
time
format
regulatory issues
liability fears

57. 57

58. 58

59. 59

60. key insights:
!
make the interface visual
!
bring the experience into the
consent process itself

61. 1. initial metaphor

62. 62
2. initial design

63. 63
3. second revision

64. implementation in 2 Sage
Bionetworks clinical
studies (parkinsons,
post-chemo cognition)

65. user interface to
consent
informed consent
document
map between
form and interface
IRB
reviews for ethical
and scientific propriety
reviews for effectiveness
in informing
mobile clinical
use standard, vetted interface study protocol
and open source software
code for consent
write locally appropriate
consent forms

66. 66
4. PD mobile study (IRB approved)

67. 67

68. 68

69. 69

70. 70

71. 71

72. 72

73. 73

74. 74

75. 75

76. 76

77. 77

78. 78

79. 79

80. 4.
!
the participant-centered
consent toolkit

81. 81

82. 82
PCC Visual Language
PCC consent workflows
Sample clinical documents
Implementation support

83. 83
everything needed to create visual
consent interfaces…

84. 84
only requirement is attribution.

85. Release Strategy
!
• article in E-GEMS methods journal
• website with open source tools (attribution licenses)
!
• apps implementing
• pre-committed beta testers
• public presentations through autumn
• social media promotion
!
• liase with PRIM&R and others to smooth review of
protocols using toolkit

86. technical architecture for open science
86

87. 87
(the price is freedom)

89. this is not an abstract
thing, this open science.

90. “our competitors' reliance on public
databases with high VUS and error
rates will further restrict patient
access to this life-saving medicine.”

91. open systems allow for
evolution, for experimentation,
for adaptation.

94. 94

97. no company could have
built it.

98. don’t we deserve that
kind of freedom to
“make” in health care?

99. thank you.
!
@wilbanks
john.wilbanks@sagebase.org