athena plc wilbanks
TRANSCRIPT
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