barcelona wilbanks 2013
TRANSCRIPT
prelude:how to spend a billion
dollars.
3
4
5
6
7
assume 1,000,000 downloadsassume 10% false positive rate
100,000 doctor visits$1000 per biopsy
1. research + “citizen”is good for research.
2. integrating (most) patient data is (mostly)
incoherent.
http://files.snpedia.com/reports/promethease_data/genome_jtw_ui2.html
collaborations on coherent data are proven
to create value.
23
24
3. collaboration implies new forms of governance.
PLC: “portable” legal consent
populate the open layer.
terms in blue pop up definitions
volunteer must click to proceed
all boxes must be checked
volunteer cannot skip video
~1000 enrolled~65% contributing
35
36
37
38
4. building on the experience.
40
patient
emailpatient #XYZ123
researcher
interoperable “sandbox” consent
scalable incentives to behave.