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1. 
enclosures and openings
http://genomemedicine.com/content/5/3/27
as much as 84% of the genes in the human genome 
http://genomemedicine.com/content/5/3/27
and very little changes, very slowly.
(but if an iPhone bends, we are ON IT)
2. 
! 
a new methodology for 
research
not just solo labs, but 
communities.
TCGA Pan-Cancer Consortium
TCGA Pan-Cancer Consortium
TCGA Pan-Cancer Consortium
TCGA Pan-Cancer Consortium
TCGA Pan-Cancer Consortium
TCGA Pan-Cancer Consortium 
doi:10.7303/syn1710680.4
TCGA Pan-Cancer Consortium 
N1PG 8papers 248 c6ore pr8ojects researchers 28 institutions 1070 datasets 1723 results
29
30 
groups datasets subtypes 
A 
B 
C 
D 
E 
F 
1 
2 
3 
4 
5 
6
31 
A 
B 
C 
D 
E 
F 
1 
2 
3 
4 
5 
6 
G ...
not just solo labs, but 
challenges.
code sharing a prerequisite. 
http://synapse.org
accuracy of model 
jumped three orders of 
magnitude in nine days.
76% accurate. 
36
generated an entire suite of 
available math models attacking 
the problem.
21 february 2013 
17 april 2013 
ongoing...
SHOW ME THE CODE!
...
(all code is free as in beer and as 
in freedom) 
! 
http://synapse.org 
https://github.com/Sage- 
Bionetworks/Synapse-Rep...
not just solo labs, but 
the general public.
how do we scale engagement 
when our systems weren’t 
built for it?
https://www.scienceexchange.com/
3. 
! 
informed consent as vector 
for scaling engagement
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
57
58
59
key insights: 
! 
make the interface visual 
! 
bring the experience into the 
consent process itself
1. initial metaphor
62 
2. initial design
63 
3. second revision
implementation in 2 Sage 
Bionetworks clinical 
studies (parkinsons, 
post-chemo cognition)
user interface to 
consent 
informed consent 
document 
map between 
form and interface 
IRB 
reviews for ethical 
and sci...
66 
4. PD mobile study (IRB approved)
67
68
69
70
71
72
73
74
75
76
77
78
79
4. 
! 
the participant-centered 
consent toolkit
81
82 
PCC Visual Language 
PCC consent workflows 
Sample clinical documents 
Implementation support
83 
everything needed to create visual 
consent interfaces…
84 
only requirement is attribution.
Release Strategy 
! 
• article in E-GEMS methods journal 
• website with open source tools (attribution licenses) 
! 
• ap...
technical architecture for open science 
86
87 
(the price is freedom)
this is not an abstract 
thing, this open science.
“our competitors' reliance on public 
databases with high VUS and error 
rates will further restrict patient 
access to th...
open systems allow for 
evolution, for experimentation, 
for adaptation.
94
no company could have 
built it.
don’t we deserve that 
kind of freedom to 
“make” in health care?
thank you. 
! 
@wilbanks 
john.wilbanks@sagebase.org
A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data
A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data
A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data
A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data
A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data
A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data
A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data
A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data
A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data
A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data
A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data
A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data
A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data
A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data
A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data
A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data
A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data
A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data
A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data
A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data
A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data
A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data
A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data
A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data
A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data
A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data
A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data
A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data
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A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data

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

Published in: Health & Medicine
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A New Model for Informed Consent: The Impact of Open Science on the Responsible Use of Research Data

  1. 1. 1. enclosures and openings
  2. 2. http://genomemedicine.com/content/5/3/27
  3. 3. as much as 84% of the genes in the human genome http://genomemedicine.com/content/5/3/27
  4. 4. and very little changes, very slowly.
  5. 5. (but if an iPhone bends, we are ON IT)
  6. 6. 2. ! a new methodology for research
  7. 7. not just solo labs, but communities.
  8. 8. TCGA Pan-Cancer Consortium
  9. 9. TCGA Pan-Cancer Consortium
  10. 10. TCGA Pan-Cancer Consortium
  11. 11. TCGA Pan-Cancer Consortium
  12. 12. TCGA Pan-Cancer Consortium
  13. 13. TCGA Pan-Cancer Consortium doi:10.7303/syn1710680.4
  14. 14. TCGA Pan-Cancer Consortium N1PG 8papers 248 c6ore pr8ojects researchers 28 institutions 1070 datasets 1723 results
  15. 15. 29
  16. 16. 30 groups datasets subtypes A B C D E F 1 2 3 4 5 6
  17. 17. 31 A B C D E F 1 2 3 4 5 6 G ...
  18. 18. not just solo labs, but challenges.
  19. 19. code sharing a prerequisite. http://synapse.org
  20. 20. accuracy of model jumped three orders of magnitude in nine days.
  21. 21. 76% accurate. 36
  22. 22. generated an entire suite of available math models attacking the problem.
  23. 23. 21 february 2013 17 april 2013 ongoing...
  24. 24. SHOW ME THE CODE!
  25. 25. ...
  26. 26. (all code is free as in beer and as in freedom) ! http://synapse.org https://github.com/Sage- Bionetworks/Synapse-Repository- Services
  27. 27. not just solo labs, but the general public.
  28. 28. how do we scale engagement when our systems weren’t built for it?
  29. 29. https://www.scienceexchange.com/
  30. 30. 3. ! informed consent as vector for scaling engagement
  31. 31. written by a doctor edited by a lawyer re-edited by a committee presented to a participant for zero-sum game
  32. 32. written by a doctor edited by a lawyer re-edited by a committee presented to a participant for zero-sum game
  33. 33. comprehension language time format regulatory issues liability fears
  34. 34. 57
  35. 35. 58
  36. 36. 59
  37. 37. key insights: ! make the interface visual ! bring the experience into the consent process itself
  38. 38. 1. initial metaphor
  39. 39. 62 2. initial design
  40. 40. 63 3. second revision
  41. 41. implementation in 2 Sage Bionetworks clinical studies (parkinsons, post-chemo cognition)
  42. 42. 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
  43. 43. 66 4. PD mobile study (IRB approved)
  44. 44. 67
  45. 45. 68
  46. 46. 69
  47. 47. 70
  48. 48. 71
  49. 49. 72
  50. 50. 73
  51. 51. 74
  52. 52. 75
  53. 53. 76
  54. 54. 77
  55. 55. 78
  56. 56. 79
  57. 57. 4. ! the participant-centered consent toolkit
  58. 58. 81
  59. 59. 82 PCC Visual Language PCC consent workflows Sample clinical documents Implementation support
  60. 60. 83 everything needed to create visual consent interfaces…
  61. 61. 84 only requirement is attribution.
  62. 62. 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
  63. 63. technical architecture for open science 86
  64. 64. 87 (the price is freedom)
  65. 65. this is not an abstract thing, this open science.
  66. 66. “our competitors' reliance on public databases with high VUS and error rates will further restrict patient access to this life-saving medicine.”
  67. 67. open systems allow for evolution, for experimentation, for adaptation.
  68. 68. 94
  69. 69. no company could have built it.
  70. 70. don’t we deserve that kind of freedom to “make” in health care?
  71. 71. thank you. ! @wilbanks john.wilbanks@sagebase.org

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