hitrd wilbanks may 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 v. “citizen”is bad for research.

"There is no reason anyone would want a computer in their home."

Ken Olsen, founder of Digital Equipment Corporation, 1977

2010: <10,000

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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

“Also there is no suggestion of consanguinity in your pedigree.”

http://www.ianlogan.co.uk/

collaborations on coherent data are proven

to create value.

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3. collaboration implies new forms of governance.

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Synapse  Data  Use  Condi4ons  Training

• Link  on  Synapse  home  page

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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

~600 enrolled~65% contributing

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4. building on the experience.

http://sagebridge.org

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“modules” by class of data

interoperable “sandbox” consent

scalable economic incentives to behave.

moving PLC to an open consent standard.

patient

emailpatient #XYZ123

researcher

Individual  Level  Data

De-­‐iden4fiedDataset

Sage  BionetworksCGRE

Portable  Legal  Consent

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Par4cipants

Researchers

CGRE  Database Synapse  Database

Advocacy  Founda4on

HospitalAdvocacy  Founda4on

Portable  Legal  Consent

Public  Recruitment

Sage  BionetworksSynapse

Portable  Legal  Consent

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Par4cipants

Advocacy  Founda4on

HospitalAdvocacy  Founda4on

join the conversation

john.wilbanks@sagebase.org

wilbanks@nitrd.gov