Successfully reported this slideshow.
We use your LinkedIn profile and activity data to personalize ads and to show you more relevant ads. You can change your ad preferences anytime.
1. 
! 
hypothesis: data at scale 
demands new methodology.
not just solo labs, but 
communities.
TCGA Pan-Cancer Consortium
TCGA Pan-Cancer Consortium
TCGA Pan-Cancer Consortium
the problem: the 
tacit knowledge used 
to analyze data is not 
captured.
it’s a science practice 
problem. it is not a 
technology problem.
TCGA Pan-Cancer Consortium 
doi:10.7303/syn1710680.4
combining new 
practice with version 
control and 
provenance…
TCGA Pan-Cancer Consortium 
N1PG 8papers 248 c6ore pr8ojects researchers 28 institutions 1070 datasets 1723 results
gained users from 
across TCGA
15
16 
groups datasets subtypes 
A 
B 
C 
D 
E 
F 
1 
2 
3 
4 
5 
6
17 
A 
B 
C 
D 
E 
F 
1 
2 
3 
4 
5 
6 
G ...
http://synapse.org 
https://github.com/Sage- 
Bionetworks/Synapse-Repository- 
Services
not just solo labs, but 
challenges.
code sharing a prerequisite. 
http://synapse.org
76% accurate. 
22
generated an entire 
suite of available math 
models attacking the 
problem.
2. 
! 
hypothesis: we are capable of 
engaging the general public.
IRB approved for 
100,000 participants
just submitted: post-chemo 
cognitive impact
patricia ganz, ucla 
ann partridge, dana farber 
kathryn schmitz, u penn
3. 
! 
hypothesis: we must design 
better informed consent 
experiences
the problem: we use to 
consent to offload 
liability, not to engage in 
a new kind of science.
written by a doctor 
edited by a lawyer 
re-edited by a committee 
presented to a participant 
for zero-sum game
written by a doctor 
edited by a lawyer 
re-edited by a committee 
presented to a participant 
for zero-sum game
comprehension 
language 
time 
format 
regulatory issues 
liability fears
41
42
43
key insights: 
! 
make the interface visual 
! 
bring the experience into the 
consent process itself
1. initial metaphor
46 
2. initial design
47 
3. second revision
48
49
50
51
52
53
54
55
56
57
58
4. 
! 
the participant-centered 
consent toolkit
60 
PCC Visual Language 
PCC consent workflows 
Sample clinical documents 
Implementation support 
! 
Attribution-only lic...
61 
everything needed to create visual 
consent interfaces…
62 
currently support: 
surveys / PRO tools 
mobile / sensors 
basic study concepts 
! 
looking for driving projects to 
e...
https://www.scienceexchange.com/
if anyone wants to stand 
up an app-based study…
67 
filed umbrella protocol for 3rd party 
support…
68 
(the price is data becomes open 
over time)
user interface to 
consent 
informed consent 
document 
map between 
form and interface 
IRB 
reviews for ethical 
and sci...
we want to work with you.
thank you. 
! 
@wilbanks 
john.wilbanks@sagebase.org
A New Model for Informed Consent - Participant Centered Consent - Broad Institute
A New Model for Informed Consent - Participant Centered Consent - Broad Institute
A New Model for Informed Consent - Participant Centered Consent - Broad Institute
A New Model for Informed Consent - Participant Centered Consent - Broad Institute
A New Model for Informed Consent - Participant Centered Consent - Broad Institute
A New Model for Informed Consent - Participant Centered Consent - Broad Institute
A New Model for Informed Consent - Participant Centered Consent - Broad Institute
A New Model for Informed Consent - Participant Centered Consent - Broad Institute
A New Model for Informed Consent - Participant Centered Consent - Broad Institute
A New Model for Informed Consent - Participant Centered Consent - Broad Institute
A New Model for Informed Consent - Participant Centered Consent - Broad Institute
A New Model for Informed Consent - Participant Centered Consent - Broad Institute
A New Model for Informed Consent - Participant Centered Consent - Broad Institute
A New Model for Informed Consent - Participant Centered Consent - Broad Institute
A New Model for Informed Consent - Participant Centered Consent - Broad Institute
A New Model for Informed Consent - Participant Centered Consent - Broad Institute
Upcoming SlideShare
Loading in …5
×

A New Model for Informed Consent - Participant Centered Consent - Broad Institute

1,454 views

Published on

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

A New Model for Informed Consent - Participant Centered Consent - Broad Institute

  1. 1. 1. ! hypothesis: data at scale demands new methodology.
  2. 2. not just solo labs, but communities.
  3. 3. TCGA Pan-Cancer Consortium
  4. 4. TCGA Pan-Cancer Consortium
  5. 5. TCGA Pan-Cancer Consortium
  6. 6. the problem: the tacit knowledge used to analyze data is not captured.
  7. 7. it’s a science practice problem. it is not a technology problem.
  8. 8. TCGA Pan-Cancer Consortium doi:10.7303/syn1710680.4
  9. 9. combining new practice with version control and provenance…
  10. 10. TCGA Pan-Cancer Consortium N1PG 8papers 248 c6ore pr8ojects researchers 28 institutions 1070 datasets 1723 results
  11. 11. gained users from across TCGA
  12. 12. 15
  13. 13. 16 groups datasets subtypes A B C D E F 1 2 3 4 5 6
  14. 14. 17 A B C D E F 1 2 3 4 5 6 G ...
  15. 15. http://synapse.org https://github.com/Sage- Bionetworks/Synapse-Repository- Services
  16. 16. not just solo labs, but challenges.
  17. 17. code sharing a prerequisite. http://synapse.org
  18. 18. 76% accurate. 22
  19. 19. generated an entire suite of available math models attacking the problem.
  20. 20. 2. ! hypothesis: we are capable of engaging the general public.
  21. 21. IRB approved for 100,000 participants
  22. 22. just submitted: post-chemo cognitive impact
  23. 23. patricia ganz, ucla ann partridge, dana farber kathryn schmitz, u penn
  24. 24. 3. ! hypothesis: we must design better informed consent experiences
  25. 25. the problem: we use to consent to offload liability, not to engage in a new kind of science.
  26. 26. written by a doctor edited by a lawyer re-edited by a committee presented to a participant for zero-sum game
  27. 27. written by a doctor edited by a lawyer re-edited by a committee presented to a participant for zero-sum game
  28. 28. comprehension language time format regulatory issues liability fears
  29. 29. 41
  30. 30. 42
  31. 31. 43
  32. 32. key insights: ! make the interface visual ! bring the experience into the consent process itself
  33. 33. 1. initial metaphor
  34. 34. 46 2. initial design
  35. 35. 47 3. second revision
  36. 36. 48
  37. 37. 49
  38. 38. 50
  39. 39. 51
  40. 40. 52
  41. 41. 53
  42. 42. 54
  43. 43. 55
  44. 44. 56
  45. 45. 57
  46. 46. 58
  47. 47. 4. ! the participant-centered consent toolkit
  48. 48. 60 PCC Visual Language PCC consent workflows Sample clinical documents Implementation support ! Attribution-only licensing
  49. 49. 61 everything needed to create visual consent interfaces…
  50. 50. 62 currently support: surveys / PRO tools mobile / sensors basic study concepts ! looking for driving projects to extend support…
  51. 51. https://www.scienceexchange.com/
  52. 52. if anyone wants to stand up an app-based study…
  53. 53. 67 filed umbrella protocol for 3rd party support…
  54. 54. 68 (the price is data becomes open over time)
  55. 55. 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
  56. 56. we want to work with you.
  57. 57. thank you. ! @wilbanks john.wilbanks@sagebase.org

×