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...
UNCOMFORTABLE FACT:google would never make adecision on something asimportant as advertising …with asample size as small a...
UNCOMFORTABLE FACT:google would never make adecision on something asimportant as advertising…with asample size as small as...
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 academi...
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          Con...
IRB APPROVED TO COLLECTAND DISTRIBUTE USERDONATED DATATHREE SCENARIOS
3      Portable Legal Consent             2 Advocacy                       AdvocacyFoundation       Hospital      Foundati...
USER GOVERNANCE OF THESTANDARDS IN THE LONGTERMTHREE SCENARIOS
timeline:06/2012 - patient enrollment08/2012 – “bolt on” tools09/2012 – vendor integration tools12/2012 – 25,000 enrolled0...
follow:@wilbankshttp://weconsent.ussupported by:- sage bionetworks- inspire2live- ewing marion kauffman foundation- lybba....
Athena plc wilbanks
Athena plc wilbanks
Athena plc wilbanks
Athena plc wilbanks
Athena plc wilbanks
Athena plc wilbanks
Athena plc wilbanks
Athena plc wilbanks
Athena plc wilbanks
Athena plc wilbanks
Athena plc wilbanks
Athena plc wilbanks
Athena plc wilbanks
Athena plc wilbanks
Athena plc wilbanks
Athena plc wilbanks
Athena plc wilbanks
Athena plc wilbanks
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  • control over informationhuman dignityintimacyrestricted accessharm preventionexploitationdiscrimination
  • Athena plc wilbanks

    1. 1. athena retreat5/18/12
    2. 2. TREND #1:COMPUTATIONAL RESEARCH ISUNREASONABLY EFFECTIVE
    3. 3. “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.”
    4. 4. UNCOMFORTABLE FACT:google would never make adecision on something asimportant as advertising …with asample size as small as a phase3 clinical trial.
    5. 5. UNCOMFORTABLE FACT:google would never make adecision on something asimportant as advertising…with asample size as small as a phase3 clinical trial.
    6. 6. TREND #2:“HEALTH” DATA BECAME EASYTO COLLECT OUTSIDE THECLINICTHREE SCENARIOS
    7. 7. data collected 1994-962695 participantsgrant cost $85 per personTHREE SCENARIOS
    8. 8. 5 months ~ 7,680,000 ratings ~ 500,000 meals 50 countries no grant no IRB no academicsTHREE SCENARIOS
    9. 9. TREND #3:MASS CULTURE MOVESFASTER THAN INSTITUTIONALSYSTEMSTHREE SCENARIOS
    10. 10. “Privacy is about context, socialsituations, and control.” - danah boyd
    11. 11. [at least some] people really liketo share as their form of controlTHREE SCENARIOS
    12. 12. why is this so hard?THREE SCENARIOS
    13. 13. PROBLEM:HEALTH DATA CANNOT“COMMUNICATE COMPATIBLY”WITHOUT INTERVENTIONTHREE SCENARIOS
    14. 14. ROUTING THROUGH THEPATIENT IS THE FASTESTROUTE TO COMPATIBLECOMMUNICATION
    15. 15. PORTABLE CONSENT TOPOPULATE THEINFRASTRUCTURETHREE SCENARIOS
    16. 16. terms in blue pop up to definitions
    17. 17. all boxes must be checked volunteer must click to proceed
    18. 18. volunteer cannot skip video
    19. 19. data types:1. genome2. medical / health records3. lifestyle4. laboratory (connect via GUID)
    20. 20. please email patient #XYZ123researcher patient
    21. 21. 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
    22. 22. IRB APPROVED TO COLLECTAND DISTRIBUTE USERDONATED DATATHREE SCENARIOS
    23. 23. 3 Portable Legal Consent 2 Advocacy AdvocacyFoundation Hospital Foundation Participants 1
    24. 24. USER GOVERNANCE OF THESTANDARDS IN THE LONGTERMTHREE SCENARIOS
    25. 25. 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
    26. 26. follow:@wilbankshttp://weconsent.ussupported by:- sage bionetworks- inspire2live- ewing marion kauffman foundation- lybba.org
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