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we’re trying to change
the nature of research.
undersized,
underpowered,
exclusionary,
wasteful.
http://www.zmescience.com/medicine/mind-and-brain/man-feel-invisible-24042015/
1.
the odds of successful
conversion to wisdom go up
as more people can see the
data.
code sharing a prerequisite.
http://synapse.org
accuracy of model
jumped three orders of
magnitude in nine days.
12
76% accurate.
people are starting to
get medical data outside
the medical-research
industrial complex
people are starting to
get medical data outside
the context of regulation
and bioethics.
2.
the Bridge project.
from 1800 to
100,000
689,003 people
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
liability
3.
informed consent in a mobile
context?
1. series of interviews and
requirements gathering

2. interaction design
process and prototyping

3. consent development
courtesy of: David Fore
relatively low risk
observational study
primary risk is to privacy
gait
balance
voice
tapping
1. tiered information access by
participants

2. “pictorial” dominant on first
information tier

3. text dominant on second...
initial metaphor
41
force the conversation every
time:
what must a participant
understand to provide
informed consent?
43
mPower
(Parkinsons Disease)
Share the Journey
(Breast Cancer Survivor)
45
46
post-consent, pre-enrollment:
assessment (must get all 5 right)
archives and ongoing engagement
emailed to participant
also available in-app
changeable by participant
“participant centric
consent toolkit”
http://sagebase.org/pcc
iconographic
representations
of key concepts
in informed
consent
open source methods
design layouts
workflows
web templates and assets
4.
next: close the loop to the
patient.
76
“virtual
tumor
boards”
consent isn’t standalone. it
connects to ethics and
governance structures inside
data use - and back.
thank you
http://sagebase.org/
@sagebio
@wilbanks
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
OpenClinica Europe 2015 - Keynote
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OpenClinica Europe 2015 - Keynote

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Keynote slides from Open Clinica's 2015 meeting in Amsterdam.

Published in: Health & Medicine
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OpenClinica Europe 2015 - Keynote

  1. 1. we’re trying to change the nature of research.
  2. 2. undersized, underpowered, exclusionary, wasteful.
  3. 3. http://www.zmescience.com/medicine/mind-and-brain/man-feel-invisible-24042015/
  4. 4. 1. the odds of successful conversion to wisdom go up as more people can see the data.
  5. 5. code sharing a prerequisite. http://synapse.org
  6. 6. accuracy of model jumped three orders of magnitude in nine days.
  7. 7. 12 76% accurate.
  8. 8. people are starting to get medical data outside the medical-research industrial complex
  9. 9. people are starting to get medical data outside the context of regulation and bioethics.
  10. 10. 2. the Bridge project.
  11. 11. from 1800 to 100,000
  12. 12. 689,003 people
  13. 13. written by a doctor edited by a lawyer re-edited by a committee
 presented to a participant for zero-sum game
  14. 14. written by a doctor edited by a lawyer re-edited by a committee
 presented to a participant for zero-sum game
  15. 15. comprehension language time format
 regulatory liability
  16. 16. 3. informed consent in a mobile context?
  17. 17. 1. series of interviews and requirements gathering
 2. interaction design process and prototyping
 3. consent development
  18. 18. courtesy of: David Fore
  19. 19. relatively low risk observational study primary risk is to privacy
  20. 20. gait balance voice tapping
  21. 21. 1. tiered information access by participants
 2. “pictorial” dominant on first information tier
 3. text dominant on second information tier
 4. require perfect score on short assessment
  22. 22. initial metaphor
  23. 23. 41
  24. 24. force the conversation every time: what must a participant understand to provide informed consent?
  25. 25. 43
  26. 26. mPower (Parkinsons Disease) Share the Journey (Breast Cancer Survivor)
  27. 27. 45
  28. 28. 46
  29. 29. post-consent, pre-enrollment: assessment (must get all 5 right)
  30. 30. archives and ongoing engagement
  31. 31. emailed to participant
  32. 32. also available in-app
  33. 33. changeable by participant
  34. 34. “participant centric consent toolkit” http://sagebase.org/pcc
  35. 35. iconographic representations of key concepts in informed consent open source methods
  36. 36. design layouts
  37. 37. workflows
  38. 38. web templates and assets
  39. 39. 4. next: close the loop to the patient.
  40. 40. 76
  41. 41. “virtual tumor boards”
  42. 42. consent isn’t standalone. it connects to ethics and governance structures inside data use - and back.
  43. 43. thank you http://sagebase.org/ @sagebio @wilbanks

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