Code for america

code for americasummer code party23 june 2012

john wilbanks@wilbanks

if government = platformthen science = wiki

why not extend?

if government = platformthen science = wiki

why not extend?

for every $100,000 invested.6 to 5 papers published.

for every $100,000 invested.6 to 5 papers published.

all credit to @researchremix

a terribly inefficient wiki.

1. open content

since no publisher has presented adverse event data

why not extend?

“data and analytics to enable its customers to evaluate and manage risks associated with

transactions”

since no publisher has presented adverse event data

why not extend?

“It would also compel American taxpayers to subsidize the acquisition of important research information by foreign governments and corporations that compete in global markets with the public and private scientific enterprises conductedin the United States.”

on FRPAA:

(american association of publishers)

foreign governments can afford subscriptions if they

want them.

no change in outcome without change in stakeholders.

WE PETITION THE OBAMA ADMINISTRATION TO:Require free, timely access over the Internet to journal articles arising from taxpayer-funded research.

We believe in the power of the Internet to foster innovation, research, and education.  Requiring the published results of taxpayer-funded research to be posted on the Internet in human and machine readable form would provide access to patients and caregivers, students and their teachers, researchers, entrepreneurs, and other taxpayers who paid for the research. Expanding access would speed the research process and increase the return on our investment in scientific research.

The highly successful Public Access Policy of the National Institutes of Health proves that this can be done without disrupting the research process, and we urge President Obama to act now to implement open access policies for all federal agencies that fund scientific research.

thanks @sennoma, @mrgunn, and more!

2. open data

“raw data now”

gathered independently, for different reasons...

“raw metadata and standards processes, and consensus processes, and document submission standards, and archives”

no: trackingfollowupaccountabilitytransparency

existential questions about data…

3. open consent

data collected 1994-962695 participantsgrant cost $85 per person THREE SCENARIOS

data used to be really hard to get.

5 months~ 7,680,000 ratings

~ 500,000 meals50 countries

no grantno IRB

no academicsTHREE SCENARIOS

[at least some] people really like to share as their form of controlTHREE SCENARIOS

THE UNINTENDED CONSEQUENCES OF INFORMED CONSENT

PORTABLE CONSENT TO DONATE YOUR DATA TO SCIENCETHREE SCENARIOS

terms in blue pop up to definitions

volunteer must click to proceed

all boxes must be checked

volunteer cannot skip video

data types:1. genome2. medical / health records3. lifestyle4. laboratory (connect via GUID)

Individual Level Data

De-identifiedDataset

Sage BionetworksCGRE

Portable Legal Consent

1 2 3 4 5

Participants

Researchers

CGRE Database Synapse Database

Advocacy Foundation

Hospital

Advocacy Foundation

Portable Legal Consent

Public Recruitment

Sage BionetworksSynapse

Portable Legal Consent

1 2 3

Advocacy Foundation

Hospital

Advocacy Foundation

making science a modestly effective wiki.

content + permission + people

thank you and good luck.

http://weconsent.us - consenthttp://del-fi.org - blog