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1. personalized medicine
means a probability culture.
“predictions are hard. especially about the
future”
but predictions about me are increasingly
accurate.
“it’s like they know me”
it’s like they know me
probability is going to be a way that we make
personalized health happen.
requires a massive increase in sample size from today.
“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…”
689,003 people
active patients feel the system is failing them,
and are looking elsewhere.
“nothing about me without me!”
http://files.snpedia.com/reports/promethease_data/genome_jtw_ui2.html
2.
informed consent for studies at internet scale.
from 1800 to 100,000
1. series of interviews and requirements gathering
2. interaction design process and prototyping
3. consent development
courtesy of: David Fore
gait balance voice tapping
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
34
64,926 enrolled since 9 March
(across 5 study apps using the method)
changeable by participant
70% choose to share broadly.
3.
it’s a method, not a product.
iconographic representations of key concepts in informed consent
“nouns and verbs”
http://sagebase.org/pcc
“sentences”
“separating your identity from your data”
design layouts
workflows
web templates and assets
2015 tasks:
- multi-stakeholder data sharing process development - new modules for e-consent - connection with biobanks
consent isn’t standalone. it connects to ethics and governance structures inside data use - and back.
