Barcelona wilbanks 2013

prelude:how to spend a billion

dollars.

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assume 1,000,000 downloadsassume 10% false positive rate

100,000 doctor visits$1000 per biopsy

1. research + “citizen”is good for research.

https://www.scienceexchange.com/

2. integrating (most) patient data is (mostly)

incoherent.

http://opensnp.org/users/615

http://files.snpedia.com/reports/promethease_data/genome_jtw_ui2.html

collaborations on coherent data are proven

to create value.

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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

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4. building on the experience.

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patient

emailpatient #XYZ123

researcher

interoperable “sandbox” consent

scalable incentives to behave.

join the conversation

john.wilbanks@sagebase.org

wilbanks@nitrd.gov