Your SlideShare is downloading. ×
PLC Sage Congress 2012
PLC Sage Congress 2012
PLC Sage Congress 2012
PLC Sage Congress 2012
PLC Sage Congress 2012
PLC Sage Congress 2012
PLC Sage Congress 2012
PLC Sage Congress 2012
PLC Sage Congress 2012
PLC Sage Congress 2012
PLC Sage Congress 2012
PLC Sage Congress 2012
PLC Sage Congress 2012
PLC Sage Congress 2012
PLC Sage Congress 2012
PLC Sage Congress 2012
PLC Sage Congress 2012
PLC Sage Congress 2012
PLC Sage Congress 2012
PLC Sage Congress 2012
PLC Sage Congress 2012
PLC Sage Congress 2012
PLC Sage Congress 2012
PLC Sage Congress 2012
PLC Sage Congress 2012
PLC Sage Congress 2012
PLC Sage Congress 2012
Upcoming SlideShare
Loading in...5
×

Thanks for flagging this SlideShare!

Oops! An error has occurred.

×
Saving this for later? Get the SlideShare app to save on your phone or tablet. Read anywhere, anytime – even offline.
Text the download link to your phone
Standard text messaging rates apply

PLC Sage Congress 2012

961

Published on

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
0 Comments
1 Like
Statistics
Notes
  • Be the first to comment

No Downloads
Views
Total Views
961
On Slideshare
0
From Embeds
0
Number of Embeds
1
Actions
Shares
0
Downloads
2
Comments
0
Likes
1
Embeds 0
No embeds

Report content
Flagged as inappropriate Flag as inappropriate
Flag as inappropriate

Select your reason for flagging this presentation as inappropriate.

Cancel
No notes for slide

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)

×