sage bionetworks consent overview - november 2017
TRANSCRIPT
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eConsent work at Sage
Bionetworks
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1. “technical debt” means traditional (non-mobile) consent has known problems, but is hard to change.
2. signs of support for new methods of using technology as pedagogy in consent
This project was supported by grant number U18HS022789 from the Agency for Healthcare Research and Quality. The content is solely the responsibility of the authors and does not necessarily represent the official views of the Agency of Healthcare Research and Quality.Additional support was provided by the Robert Wood Johnson Foundation, the Helmsley Charitable Trust, and Academy Health.
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Layered information access by participants
1. “pictorial” dominant on first information layer
2. text dominant on second information layer
3. require short formative assessment
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screen structure
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Navigation
reinforces – from
“learn more” forced
back to primary
screen to proceed
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study “narrative”
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http://sagebase.org/governance/participant-
centered-consent-toolkit/
icons
templates
reference
implementations
reusable toolkit to build your own:
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http://sagebase.org/governance/participant-
centered-consent-toolkit/
icons
templates
reference
implementations
grassroots opportunity to
map standard legal text and
semantics
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uptake
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uptake
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changeable by participant
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reused on
data use terms
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what modules are missing? what
combinations serve you best?
please @ us
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additional context:
issues in electronic consent
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in traditional consent:
comprehension
language
time
format
heterogeneity
regulatory
liability
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the only element universally liked is
the core interaction removed in
eConsent – human to human
conversation
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on screens, we read very differently
than in print.
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