CENDI wilbanks

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Talk given to the meeting of the CENDI group in early November 2013. CENDI is a volunteer-powered membership organization that serves the federal information community - that is, all those who create, …

Talk given to the meeting of the CENDI group in early November 2013. CENDI is a volunteer-powered membership organization that serves the federal information community - that is, all those who create, manage, aggregate, organize, and provide access to federally-funded data and publications resulting from the nation’s $150 billion annual investment in federal R&D. Member organizations represent a cross-section of federal data and publication providers, including libraries, data centers, aggregators, information technology developers, and content management providers.

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  • 1. 1. the policy environment. it is not sufficient.
  • 2. http://www.systemswiki.org/images/8/8a/Wisdom.png
  • 3. “is it open?” is perhaps not the right frame.
  • 4. accessibility adaptability ease of mastery leverage
  • 5. accessibility EASY TO USE NO OPEN LICENSE adaptability ease of mastery leverage
  • 6. 17
  • 7. 19
  • 8. accessibility NO OPEN LICENSE DOWNLOAD AVAILABLE DOCUMENTATION IN PDF adaptability ease of mastery leverage
  • 9. 2. doing research in the open: early returns. it is not sufficient.
  • 10. “how accurately can we predict if a female breast cancer survivor will develop a second tumor?”
  • 11. may the best (statistical) model win
  • 12. code sharing a prerequisite.
  • 13. accuracy of model jumped three orders of magnitude in nine days.
  • 14. 76% accurate. 27
  • 15. (not a biologist) 28
  • 16. 21 february 2013 17 april 2013 ongoing...
  • 17. SHOW ME THE CODE!
  • 18. ...
  • 19. ...
  • 20. ...
  • 21. ...
  • 22. ...
  • 23. if we don’t have the article in machinable form with rights to tranform? doesn’t happen.
  • 24. can we predict clinical utility from genetics of arthritis?
  • 25. can we predict scores on alzheimers cognitive tests from existing data?
  • 26. accessibility 25 THREE  OPTIONS  TO  DOWNLOAD   NO  CLEAR  LICENSE   PRIVACY  RESTRICTIONS   METADATA 25 ease   of  mastery 0 adaptability 25 25 leverage
  • 27. accessibility IMPACT  OF  PRIVATE  INTERVENTION adaptability ease   of  mastery leverage
  • 28. 68 core projects
  • 29. 248 researchers
  • 30. 28 institutions
  • 31. 1070 datasets
  • 32. 1723 results
  • 33. Omberg,  et  al.  Nature  Gene*cs
  • 34. colorectal cancer subtyping
  • 35. analysis groups datasets A 1 B 2 C 3 D 4 E 5 F 6 subtypes
  • 36. analysis groups datasets A 1 B 2 C 3 D 4 E 5 F 6 G ... subtypes
  • 37. analysis groups G
  • 38. analysis groups datasets A 1 B 2 C 3 D 4 E 5 F 6 G ... subtypes
  • 39. 3. research and culture are on a collision course, driven by data.
  • 40. tension between anonymity and utility.
  • 41. “more like plutonium than gold”
  • 42. tension between expectation and reuse.
  • 43. 68% want their data shared for science
  • 44. tension between value of individual and value of aggregate.
  • 45. $.50 to $2.50 for SSN, birthdate, etc.
  • 46. $5 to $15 for credit, background checks.
  • 47. ~40 records for $2100
  • 48. tension between “research” data and “consumer” data.
  • 49. https://www.scienceexchange.com/
  • 50. it’s likely that we will end up with a data network effect of some sort.
  • 51. a. the incremental institution.
  • 52. b. the walled garden.
  • 53. c. big networks of small things.
  • 54. thank you ! @wilbanks wilbanks@nitrd.gov