Lecture to the Program in Medical and Population Genetics, Broad Institute.

1. 1.
!
hypothesis: data at scale
demands new methodology.

4. not just solo labs, but
communities.

5. TCGA Pan-Cancer Consortium

6. TCGA Pan-Cancer Consortium

7. TCGA Pan-Cancer Consortium

8. the problem: the
tacit knowledge used
to analyze data is not
captured.

9. it’s a science practice
problem. it is not a
technology problem.

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

12. combining new
practice with version
control and
provenance…

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

14. gained users from
across TCGA

15. 15

16. 16
groups datasets subtypes
A
B
C
D
E
F
1
2
3
4
5
6

17. 17
A
B
C
D
E
F
1
2
3
4
5
6
G ...

18. http://synapse.org
https://github.com/Sage-
Bionetworks/Synapse-Repository-
Services

19. not just solo labs, but
challenges.

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

22. 76% accurate.
22

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

25. 2.
!
hypothesis: we are capable of
engaging the general public.

28. IRB approved for
100,000 participants

31. just submitted: post-chemo
cognitive impact

34. patricia ganz, ucla
ann partridge, dana farber
kathryn schmitz, u penn

35. 3.
!
hypothesis: we must design
better informed consent
experiences

36. the problem: we use to
consent to offload
liability, not to engage in
a new kind of science.

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

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

39. comprehension
language
time
format
regulatory issues
liability fears

41. 41

42. 42

43. 43

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

45. 1. initial metaphor

46. 46
2. initial design

47. 47
3. second revision

48. 48

49. 49

50. 50

51. 51

52. 52

53. 53

54. 54

55. 55

56. 56

57. 57

58. 58

59. 4.
!
the participant-centered
consent toolkit

60. 60
PCC Visual Language
PCC consent workflows
Sample clinical documents
Implementation support
!
Attribution-only licensing

61. 61
everything needed to create visual
consent interfaces…

62. 62
currently support:
surveys / PRO tools
mobile / sensors
basic study concepts
!
looking for driving projects to
extend support…

65. https://www.scienceexchange.com/

66. if anyone wants to stand
up an app-based study…

67. 67
filed umbrella protocol for 3rd party
support…

68. 68
(the price is data becomes open
over time)

70. 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

71. we want to work with you.

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