athena retreat

5/18/12

TREND #1:COMPUTATIONAL RESEARCH IS UNREASONABLY EFFECTIVE

“in 2006, Google released a trillion-word corpus with frequency counts for all sequences up to five words long. In some ways this corpus is a step backwards…it’s taken from unfiltered Web pages and thus contains incomplete sentences, spelling errors, grammatical errors, and all sorts of other errors. It’s not annotated with carefully hand-corrected part-of-speech tags. But the fact that it’s a million times larger…outweighs these drawbacks.”

UNCOMFORTABLE FACT:google would never make a decision on something as important as advertising …with a sample size as small as a phase 3 clinical trial.

UNCOMFORTABLE FACT:google would never make a decision on something as important as advertising…with a sample size as small as a phase 3 clinical trial.

TREND #2:“HEALTH” DATA BECAME EASY TO COLLECT OUTSIDE THE CLINICTHREE SCENARIOS

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

5 months~ 7,680,000 ratings

~ 500,000 meals50 countries

no grantno IRB

no academicsTHREE SCENARIOS

TREND #3:MASS CULTURE MOVES FASTER THAN INSTITUTIONAL SYSTEMSTHREE SCENARIOS

“Privacy is about context, social situations, and control.”

- danah boyd

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

why is this so hard?THREE SCENARIOS

PROBLEM:HEALTH DATA CANNOT “COMMUNICATE COMPATIBLY” WITHOUT INTERVENTIONTHREE SCENARIOS

ROUTING THROUGH THE PATIENT IS THE FASTEST ROUTE TO COMPATIBLE COMMUNICATION

PORTABLE CONSENT TO POPULATE THE INFRASTRUCTURETHREE 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)

patient

please email

patient #XYZ12

3

researcher

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

IRB APPROVED TO COLLECT AND DISTRIBUTE USER DONATED DATATHREE SCENARIOS

Portable Legal Consent

1 2 3

Participants

Advocacy Foundation

Hospital

Advocacy Foundation

USER GOVERNANCE OF THE STANDARDS IN THE LONG TERMTHREE SCENARIOS

timeline:

06/2012 - patient enrollment 08/2012 – “bolt on” tools09/2012 – vendor integration tools12/2012 – 25,000 enrolled02/2013 – 100 organizations onboard05/2013 – 50,000 enrolled

follow:

@wilbankshttp://weconsent.us

supported by:- sage bionetworks- inspire2live- ewing marion kauffman foundation- lybba.org