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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.

Published in Business , Technology
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Transcript

  • 1. SHAREDCOLLABORATION SYNAPSE SPACE SHAREDCOLLABORATION SYNAPSE SPACE GOVERNANCE GOVERNANCE CITIZENS PORTABLE CONTROL LEGAL DATA ACCESS CONSENT
  • 2. PROBLEM #1:CLINICAL DATA IS NOTLEGALLY INTEROPERABLEWITHOUT INTERVENTIONTHREE SCENARIOS
  • 3. PORTABLE CONSENT TOPOPULATE THEINFRASTRUCTURETHREE SCENARIOS
  • 4. terms in blue pop up to definitions
  • 5. all boxes must be checked volunteer must click to proceed
  • 6. volunteer cannot skip video
  • 7. thanks for pro bono review: Dan Vorhaus Bartha Knoppers Rusty Bromley Wilson Sonsini Goodrich & RosatiSage Bionetworks Ethics Advisory Team
  • 8. user decides what data to upload
  • 9. can researchers contact (anonymously)?
  • 10. please email patient #XYZ123researcher patient
  • 11. data types:1. genome2. medical / health records3. lifestyle4. laboratory (connect via GUID)
  • 12. 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
  • 13. IRB submission supported by:
  • 14. PORTABLE LEGAL CONSENTPOPULATES SYNAPSE WITHINTEROPERABLE HEALTH DATATHREE SCENARIOS
  • 15. 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
  • 16. special thanksLara MangraviteChristine SuverCarolina Rossini
  • 17. test drive athttps://plc-cgr.weconsent.us (data will be deleted)