Keynote delivered at the PRIM&R Advancing Ethical Research 2014 conference in Baltimore. http://www.primr.org/aer14/

1. 1.
informed consent “in a
mobile world”

4. how cheap (cash-wise)
it all is.

6. contracts and
technology (not)
working together…

7. designed for
systematic re-use of
personal data

9. 689,000

13. can we use the same design
methods to
assist informedness,
rather than to obscure it?

14. interaction design
prioritizes the user and
the experience

15. courtesy of: David Fore

16. first attempt at
interaction
design for
consent

18. let clinicians build
interfaces that assist the
consent experience

19. 2.
a free language for visual
informed consent

20. “nouns and verbs”
- icons for key
concepts in clinical
study
- all open source or
public domain
from Sage Bionetworks
IRB approved studies

22. “sentences” via animation
“recombining and
reusing your data”

23. not just mobile - any
place an interface
will assist

24. fully open source

25. Parkinsons Disease Mobile
Study implementation

27. from 1800 to
100,000

44. 3.
supporting methods and
materials

45. “as filed” - available for copying and
distribution (especially for use as
precedent)
templates - available as open source
documents for reuse and derivatives
(for creating new clinical submissions
to an IRB)

46. as filed:
informed consent

47. template:
informed consent

48. frequently asked
questions

49. storyboard layouts

50. 50

51. document-to-interface
mapping examples

52. software workflows

53. web assets

54. 4.
we’re a long way from “done”
(if “done” exists)

55. understand the method.

56. more nouns, verbs,
sentences, stories
- genomics
- medical records
- clinical labs

57. “chooser” to help generate templates

58. technical architecture for 3rd party
app-based studies

61. informed consent post-
Snowden

63. https://www.scienceexchange.com/

64. a. “just like now, but
moreso”

67. b. the cartel.

69. c. an open, common
network

70. 70

71. 71

74. thank you
@wilbanks
john.wilbanks@sagebase.org