plc sage congress 2012
DESCRIPTION
Slides for session on Portable Legal Consent at Sage Congress 2012.TRANSCRIPT
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SYNAPSE
CITIZENS CONTROLDATA ACCESS
PORTABLE LEGALCONSENT
SYNAPSEGOVERNANCE
SHAREDCOLLABORATION
SPACE
SHAREDCOLLABORATION
SPACEGOVERNANCE
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PROBLEM #1:CLINICAL DATA IS NOT LEGALLY INTEROPERABLE WITHOUT INTERVENTIONTHREE SCENARIOS
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PORTABLE CONSENT TO POPULATE THE INFRASTRUCTURETHREE SCENARIOS
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terms in blue pop up to definitions
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volunteer must click to proceed
all boxes must be checked
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volunteer cannot skip video
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thanks for pro bono review:Dan Vorhaus
Bartha KnoppersRusty Bromley
Wilson Sonsini Goodrich & RosatiSage Bionetworks Ethics Advisory Team
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user decides what data to upload
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can researchers contact
(anonymously)?
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patient
please email
patient #XYZ12
3
researcher
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data types:1. genome2. medical / health records3. lifestyle4. laboratory (connect via GUID)
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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
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IRB submission supported by:
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PORTABLE LEGAL CONSENT POPULATES SYNAPSE WITH INTEROPERABLE HEALTH DATATHREE SCENARIOS
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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
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special thanks
Lara MangraviteChristine SuverCarolina Rossini
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test drive at https://plc-cgr.weconsent.us
(data will be deleted)