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October 14, 2012

Singularity Summit - Your Health and your data

John Wilbanks spoke about Your health, your data

He argues for getting health data out into the public domain so that it can be used for research and for everyones benefit to enable better health.

1. Doppler shifts

There are apps where people can take pictures of food
People annote it with whether they think what they are eating is healthy or not
People think pizza is 2.5 X less healthy if someone else is eating instead of them personally eating it

Science services market place provides public source of information.

Health records are not a good metaphor

Medical record are like a giant earhorn (how they listened for planes coming over the english channel)



Radar disrupted the earhorn industry


2. Health is not like other data

Consumer data

Target - 16 year old data showed she was pregnant

Progressive - 4 behaviors risky driving patterns. Swerving, hard braking, driving midnight to 4am etc...
Put a monitor device and you do not do it then get 10-30% discount


We have a consumer genome

quantitized self

everyone anonymous for 15 minutes - clay shirky

get a usable copy of the info

Below is a chain of companies that he used to first gather his genome data and then to get it analysed and annotated. Snppedia and other analysis by researchers turned up more hypertension and other risk factors.
23andme
synapse (beta)
opensnp
snppedia

consent to research


Donate data to research- consent once
weconsent.us

sagebridge.org
connect people with disease with researchers directly

honesty, reusability, consent


Integrate EHR with app gathered data
ONC people supportive

Pharma will be a leader (GHK leading)

HL7, Ontologies - interoperable health records
need super mappings


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