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1.
we need to change the promises we make to
patients.
the old promise is: you’re my subject. trust me to make things
better.
the promises that technology makes
To predict whether or not we’ll click on ads, Facebook / Amazon / Google have longitudinal data on individuals.
where i’ve been, where i’m going
To predict whether or not we’ll click on ads, Facebook / Amazon / Google use sample sizes in the hundreds of thousands.
n=689,003
data scale requires different approaches to hypothesis
formation.
this data isn’t coming in via the oldpromises and methods.
the new promise is: you’re my partner now, and we need to work
together.
2.
those new promises can unlock new kinds of studies.
We focus on a world where biomedical research is about to fundamentally change. We think it will be often conducted in an open, collaborative way where teams of teams far beyond the current guilds of experts will contribute to making better, faster, relevant discoveries
“Investigators will meet annually in-person with each participant to assess and record progression … every six months, the team will conduct phone and mail surveys regarding diagnosis, medications, and other impacts of the
disease…”
individual progression
high-dimensional data
62 y old Man 67 y old Woman
same medicine, different impacts
“loads and reliefs” affect the efficacy of medication
the big payoff comes from recombining studies…which means no security via withholding.
radical honesty > radical restrictions
informed consent is the key.
3.
new promises mean a new way to inform and consent
http://animalnewyork.com/wp-content/uploads/Facebook-research-consent-lede.jpg
https://xkcd.com/1390/
what happens if we import toxic ethics from tech to health?
comprehensionlanguagetimeformat
what patients say
comprehensionlanguagetimeformat
what patients say
informedness by design
Visual Information areaGraphics demonstrate and reinforce the information provided in text.
Learn more linksOpens to detailed text from the consent document.
Text Information area
Instruction area
Navigation
Main Concept
tell the story, not the law, of the study.
Welcome The research Your Data impact on your life - Issues
What is involved Your rights Potential risks and benefits
Comprehension- Review & Consent
it’s a free method.
not a product.
iconographic representations of key concepts in informed consent
open source assets
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.
design layouts
mockup powerpoint templates
workflows
web templates and assets
25+ studies and growing
4.
new promises mean a new social contract for research.
changeable by participant
>100,000 ResearchKit enrolled since 3/9/2015
~75% choose to share worldwide
keeping our promise.
identity test
data use statement
our partners get to see the use.
“I would like to think that if somebody
does a test on me or my genes, that that's
mine.”
“I would like to think that if somebody
does a test on me or my genes, that that's
mine.”
what can we all do to keep that promise?
