sage bionetworks consent overview - november 2017

eConsent work at Sage

Bionetworks

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.

Layered information access by participants

1. “pictorial” dominant on first information layer

2. text dominant on second information layer

3. require short formative assessment

screen structure

Navigation

reinforces – from

“learn more” forced

back to primary

screen to proceed

study “narrative”

http://sagebase.org/governance/participant-

centered-consent-toolkit/

icons

templates

reference

implementations

reusable toolkit to build your own:

http://sagebase.org/governance/participant-

centered-consent-toolkit/

icons

templates

reference

implementations

grassroots opportunity to

map standard legal text and

semantics

uptake

uptake

changeable by participant

reused on

data use terms

what modules are missing? what

combinations serve you best?

please @ us

john.wilbanks@sagebase.org

additional context:

issues in electronic consent

in traditional consent:

comprehension

language

time

format

heterogeneity

regulatory

liability

the only element universally liked is

the core interaction removed in

eConsent – human to human

conversation

on screens, we read very differently

than in print.