Let's Pool Our Medical Data

three hypotheses.

hypothesis A:

cheap data changes the epistemology of fields.

“what makes justified beliefs justified?”

http://plato.stanford.edu/entries/epistemology/

player x is a good hitter because

OPS = AB(H + BB + HBP) + TB(AB + BB + SF + HBP) / AB(AB + BB + SF + HBP)

fields based on narrative, but tested in reality, are very vulnerable to data-driven

change.

information > “gut”models and metricslow transaction costspissed off pundits

hypothesis B:

data is (becoming) cheap enough to drive epistemic

change in health.

not just cheap, but potentially democratized.

not just democratized, but ubiquitous.

hypothesis C:

costs will not magically decline thanks to data.

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

100,000 doctor visits$1000 per biopsy

that’s the setup.

sharing by small but coherent groups can create asymmetrically valuable resources.

small group sharing

coherentism from:

standard legal toolscommon infrastructure

normsmetadata

proven to work in:softwarecontent

the experiment:

let’s a small but coherent group to

share data and see if it works in health.

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/

http://sagebridge.org

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PLC: “portable” legal consent

terms in blue pop up definitions

volunteer must click to proceed

all boxes must be checked

volunteer cannot skip video

http://weconsent.us/informed-consent/

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moving PLC to an open consent standard.

patient

emailpatient

#XYZ123

researcher

Individual  Level  Data

De-­‐iden3fiedDataset

Sage  BionetworksCGRE

Portable  Legal  Consent

1 2 3 4 5

Par3cipants

Researchers

CGRE  Database Synapse  Database

Advocacy  Founda3on

HospitalAdvocacy  Founda3on

Portable  Legal  Consent

Public  Recruitment

Sage  BionetworksSynapse

Portable  Legal  Consent

1 2 3

Par3cipants

Advocacy  Founda3on

HospitalAdvocacy  Founda3on

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five clinical studies on Bridge this year under

PLC.

it’s likely that we will end up with a sharing monopoly of some

sort.

once entrenched, hard to move.

once entrenched, hard to move.

tendency to increment.

a. “just like now, but moreso”

b. the cartel.

c. the commons.

only the last choice allows all three choices to exist.

thank you@wilbanks

john.wilbanks@sagebase.org