prelude:how to spend a billiondollars.
2
3
4
5
6
assume 1,000,000 downloadsassume 10% false positive rate100,000 doctor visits$1000 per biopsy
1. research v. “citizen”is bad for research.
"There is no reason anyonewould want a computer intheir home."Ken Olsen, founder of DigitalEquipment Corporation, 1977
2010: <10,000
15
research + “citizen”is good for research.
https://www.scienceexchange.com/
2. integrating (most)patient data is (mostly)incoherent.
http://opensnp.org/users/615
http://files.snpedia.com/reports/promethease_data/genome_jtw_ui2.html
“Also there is no suggestion ofconsanguinity in your pedigree.”http://www.ianlogan.co.uk/
collaborations oncoherent data are provento create value.
31
32
3. collaboration impliesnew forms of governance.
35
Synapse	  Data	  Use	  Condi4ons	  Training• Link	  on	  Synapse	  home	  page
37
PLC:“portable” legal consentpopulate the open layer.
terms in blue pop up definitions
volunteer must click to proceedall boxes must be checked
volunteer cannot skip video
~600 enrolled~65% contributing
46
47
48
49
4. building on theexperience.
http://sagebridge.org
52
“modules” by class of data
interoperable “sandbox”consent
scalable economicincentives to behave.
moving PLC to an openconsent standard.
patientemailpatient#XYZ123researcher
Individual	  Level	  DataDe-­‐iden4fiedDatasetSage	  BionetworksCGREPortable	  Legal	  Consent1 2 3 4 5Par4cipantsResearche...
Portable	  Legal	  Consent1 2 3Par4cipantsAdvocacy	  Founda4onHospitalAdvocacy	  Founda4on
join the conversationjohn.wilbanks@sagebase.orgwilbanks@nitrd.gov
Hitrd wilbanks may 2013
Hitrd wilbanks may 2013
Hitrd wilbanks may 2013
Hitrd wilbanks may 2013
Hitrd wilbanks may 2013
Hitrd wilbanks may 2013
Hitrd wilbanks may 2013
Hitrd wilbanks may 2013
Hitrd wilbanks may 2013
Hitrd wilbanks may 2013
Hitrd wilbanks may 2013
Hitrd wilbanks may 2013
Hitrd wilbanks may 2013
Hitrd wilbanks may 2013
Hitrd wilbanks may 2013
Hitrd wilbanks may 2013
Hitrd wilbanks may 2013
Hitrd wilbanks may 2013
Hitrd wilbanks may 2013
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Hitrd wilbanks may 2013

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Hitrd wilbanks may 2013

  1. 1. prelude:how to spend a billiondollars.
  2. 2. 2
  3. 3. 3
  4. 4. 4
  5. 5. 5
  6. 6. 6
  7. 7. assume 1,000,000 downloadsassume 10% false positive rate100,000 doctor visits$1000 per biopsy
  8. 8. 1. research v. “citizen”is bad for research.
  9. 9. "There is no reason anyonewould want a computer intheir home."Ken Olsen, founder of DigitalEquipment Corporation, 1977
  10. 10. 2010: <10,000
  11. 11. 15
  12. 12. research + “citizen”is good for research.
  13. 13. https://www.scienceexchange.com/
  14. 14. 2. integrating (most)patient data is (mostly)incoherent.
  15. 15. http://opensnp.org/users/615
  16. 16. http://files.snpedia.com/reports/promethease_data/genome_jtw_ui2.html
  17. 17. “Also there is no suggestion ofconsanguinity in your pedigree.”http://www.ianlogan.co.uk/
  18. 18. collaborations oncoherent data are provento create value.
  19. 19. 31
  20. 20. 32
  21. 21. 3. collaboration impliesnew forms of governance.
  22. 22. 35
  23. 23. Synapse  Data  Use  Condi4ons  Training• Link  on  Synapse  home  page
  24. 24. 37
  25. 25. PLC:“portable” legal consentpopulate the open layer.
  26. 26. terms in blue pop up definitions
  27. 27. volunteer must click to proceedall boxes must be checked
  28. 28. volunteer cannot skip video
  29. 29. ~600 enrolled~65% contributing
  30. 30. 46
  31. 31. 47
  32. 32. 48
  33. 33. 49
  34. 34. 4. building on theexperience.
  35. 35. http://sagebridge.org
  36. 36. 52
  37. 37. “modules” by class of data
  38. 38. interoperable “sandbox”consent
  39. 39. scalable economicincentives to behave.
  40. 40. moving PLC to an openconsent standard.
  41. 41. patientemailpatient#XYZ123researcher
  42. 42. Individual  Level  DataDe-­‐iden4fiedDatasetSage  BionetworksCGREPortable  Legal  Consent1 2 3 4 5Par4cipantsResearchersCGRE  Database Synapse  DatabaseAdvocacy  Founda4onHospitalAdvocacy  Founda4onPortable  Legal  ConsentPublic  RecruitmentSage  BionetworksSynapse
  43. 43. Portable  Legal  Consent1 2 3Par4cipantsAdvocacy  Founda4onHospitalAdvocacy  Founda4on
  44. 44. join the conversationjohn.wilbanks@sagebase.orgwilbanks@nitrd.gov

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