Athena plc wilbanks
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  • control over informationhuman dignityintimacyrestricted accessharm preventionexploitationdiscrimination

Athena plc wilbanks Athena plc wilbanks Presentation Transcript

  • athena retreat5/18/12
  • TREND #1:COMPUTATIONAL RESEARCH ISUNREASONABLY EFFECTIVE
  • “in 2006, Google released a trillion-word corpuswith frequency counts for all sequences up tofive words long. In some ways this corpus is astep backwards…it’s taken from unfiltered Webpages and thus contains incomplete sentences,spelling errors, grammatical errors, and all sortsof other errors. It’s not annotated with carefullyhand-corrected part-of-speech tags. But the factthat it’s a million times larger…outweighs thesedrawbacks.”
  • UNCOMFORTABLE FACT:google would never make adecision on something asimportant as advertising …with asample size as small as a phase3 clinical trial.
  • UNCOMFORTABLE FACT:google would never make adecision on something asimportant as advertising…with asample size as small as a phase3 clinical trial.
  • TREND #2:“HEALTH” DATA BECAME EASYTO COLLECT OUTSIDE THECLINICTHREE SCENARIOS
  • data collected 1994-962695 participantsgrant cost $85 per personTHREE SCENARIOS
  • 5 months ~ 7,680,000 ratings ~ 500,000 meals 50 countries no grant no IRB no academicsTHREE SCENARIOS
  • TREND #3:MASS CULTURE MOVESFASTER THAN INSTITUTIONALSYSTEMSTHREE SCENARIOS
  • “Privacy is about context, socialsituations, and control.” - danah boyd
  • [at least some] people really liketo share as their form of controlTHREE SCENARIOS
  • why is this so hard?THREE SCENARIOS
  • PROBLEM:HEALTH DATA CANNOT“COMMUNICATE COMPATIBLY”WITHOUT INTERVENTIONTHREE SCENARIOS
  • ROUTING THROUGH THEPATIENT IS THE FASTESTROUTE TO COMPATIBLECOMMUNICATION
  • 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
  • data types:1. genome2. medical / health records3. lifestyle4. laboratory (connect via GUID)
  • please email patient #XYZ123researcher patient
  • 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 APPROVED TO COLLECTAND DISTRIBUTE USERDONATED DATATHREE SCENARIOS
  • 3 Portable Legal Consent 2 Advocacy AdvocacyFoundation Hospital Foundation Participants 1
  • USER GOVERNANCE OF THESTANDARDS IN THE LONGTERMTHREE SCENARIOS
  • timeline:06/2012 - patient enrollment08/2012 – “bolt on” tools09/2012 – vendor integration tools12/2012 – 25,000 enrolled02/2013 – 100 organizations onboard05/2013 – 50,000 enrolled
  • follow:@wilbankshttp://weconsent.ussupported by:- sage bionetworks- inspire2live- ewing marion kauffman foundation- lybba.org