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PLC Sage Congress 2012
 

PLC Sage Congress 2012

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Slides for session on Portable Legal Consent at Sage Congress 2012.

Slides for session on Portable Legal Consent at Sage Congress 2012.

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    PLC Sage Congress 2012 PLC Sage Congress 2012 Presentation Transcript

    • SHAREDCOLLABORATION SYNAPSE SPACE SHAREDCOLLABORATION SYNAPSE SPACE GOVERNANCE GOVERNANCE CITIZENS PORTABLE CONTROL LEGAL DATA ACCESS CONSENT
    • PROBLEM #1:CLINICAL DATA IS NOTLEGALLY INTEROPERABLEWITHOUT INTERVENTIONTHREE SCENARIOS
    • PORTABLE CONSENT TOPOPULATE THEINFRASTRUCTURETHREE SCENARIOS
    • terms in blue pop up to definitions
    • all boxes must be checked volunteer must click to proceed
    • volunteer cannot skip video
    • thanks for pro bono review: Dan Vorhaus Bartha Knoppers Rusty Bromley Wilson Sonsini Goodrich & RosatiSage Bionetworks Ethics Advisory Team
    • user decides what data to upload
    • can researchers contact (anonymously)?
    • please email patient #XYZ123researcher patient
    • data types:1. genome2. medical / health records3. lifestyle4. laboratory (connect via GUID)
    • Public Portable Legal Sage Bionetworks Sage Bionetworks Recruitment Consent CGRE Synapse Foundation Advocacy CGRE Database Synapse Database Portable Legal Consent Individual Level De-identified 1 2 3 Data 4 Dataset 5 Hospital Researcher Foundation AdvocacyParticipants
    • IRB submission supported by:
    • PORTABLE LEGAL CONSENTPOPULATES SYNAPSE WITHINTEROPERABLE HEALTH DATATHREE SCENARIOS
    • timeline:05/2012 - patient enrollment08/2012 – “bolt on” tools09/2012 – vendor integration tools12/2012 – 25,000 enrolled02/2013 – 100 organizations onboard05/2013 – 50,000 enrolled
    • special thanksLara MangraviteChristine SuverCarolina Rossini
    • test drive athttps://plc-cgr.weconsent.us (data will be deleted)