1.

informed consent “in a mobile world”

how cheap (cash-wise) it all is.

contracts and technology (not)

working together…

designed for systematic re-use of

personal data

689,000

can we use the same design methods to

assist informedness, rather than to obscure it?

interaction design prioritizes the user and

the experience

courtesy of: David Fore

first attempt at interaction design for

consent

let clinicians build interfaces that assist the

consent experience

2.

a free language for visual informed consent

- icons for key concepts in clinical study - all open source or public domain

“nouns and verbs”

from Sage Bionetworks IRB approved studies

“recombining and reusing your data”

“sentences” via animation

not just mobile - any place an interface

will assist

fully open source

Parkinsons Disease Mobile Study implementation

from 1800 to 100,000

3.

supporting methods and materials

“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)

as filed: informed consent

template: informed consent

frequently asked questions

storyboard layouts

50

document-to-interface mapping examples

software workflows

web assets

4.

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

understand the method.

more nouns, verbs, sentences, stories

- genomics - medical records - clinical labs

“chooser” to help generate templates

technical architecture for 3rd party app-based studies

informed consent post-Snowden

https://www.scienceexchange.com/

a. “just like now, but moreso”

b. the cartel.

c. an open, common network

70

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thank you

@wilbanks john.wilbanks@sagebase.org