PLC Sage Congress 2012

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

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PLC Sage Congress 2012

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

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