PLC Sage Congress 2012
27
SYNAPSE CITIZENS CONTROL DATA ACCESS PORTABLE LEGAL CONSENT SYNAPSE GOVERNANCE SHARED COLLABORATION SPACE SHARED COLLABORATION SPACE GOVERNANCE
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Slides for session on Portable Legal Consent at Sage Congress 2012.
Transcript of PLC Sage Congress 2012
SYNAPSE
CITIZENS CONTROLDATA ACCESS
PORTABLE LEGALCONSENT
SYNAPSEGOVERNANCE
SHAREDCOLLABORATION
SPACE
SHAREDCOLLABORATION
SPACEGOVERNANCE
PROBLEM #1:CLINICAL DATA IS NOT LEGALLY INTEROPERABLE WITHOUT INTERVENTIONTHREE SCENARIOS
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
thanks for pro bono review:Dan Vorhaus
Bartha KnoppersRusty Bromley
Wilson Sonsini Goodrich & RosatiSage Bionetworks Ethics Advisory Team
user decides what data to upload
can researchers contact
(anonymously)?
patient
please email
patient #XYZ12
3
researcher
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
IRB submission supported by:
PORTABLE LEGAL CONSENT POPULATES SYNAPSE WITH INTEROPERABLE HEALTH DATATHREE SCENARIOS
timeline:
05/2012 - patient enrollment 08/2012 – “bolt on” tools09/2012 – vendor integration tools12/2012 – 25,000 enrolled02/2013 – 100 organizations onboard05/2013 – 50,000 enrolled
special thanks
Lara MangraviteChristine SuverCarolina Rossini
test drive at https://plc-cgr.weconsent.us
(data will be deleted)
