CENDI wilbanks
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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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CENDI wilbanks CENDI wilbanks Presentation Transcript

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