OPEN KNOWLEDGE AND THE NATIONAL INSTITUTES OF HEALTH OF THE UNITED STATES
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OPEN KNOWLEDGE AND THE NATIONAL INSTITUTES OF HEALTH OF THE UNITED STATES

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Presentation at Wikimania 2014, London 081014

Presentation at Wikimania 2014, London 081014

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OPEN KNOWLEDGE AND THE NATIONAL INSTITUTES OF HEALTH OF THE UNITED STATES OPEN KNOWLEDGE AND THE NATIONAL INSTITUTES OF HEALTH OF THE UNITED STATES Presentation Transcript

  • Philip E. Bourne philip.bourne@nih.gov OPEN KNOWLEDGE AND THE NATIONAL INSTITUTES OF HEALTH OF THE UNITED STATES
  • Science in pursuit of fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to extend healthy life and reduce illness and disability.” ... NIH: Steward of Medical and Behavioral Research for the United States Mission [Source NIH archives]
  • Spending at NIH NIH External & Internal Funding FY 2012 Enacted: $30.9 Billion 83% 17% Spending Outside NIH $25.7 B – Supports over 300,000 Scientists & Research Personnel – Supports over 2,500 Institutions – $3.4 B Intramural Research – $1.5 B Research Management & Support – $0.3 B Buildings and Facilities, Other$5.2 B Resources [Source Larry Tabak] View slide
  • General Public Scientists Voluntary Organizations Scientific Review Committees President & Administration Boards of Scientific Counselors Public Members of Advisory Councils Professional Societies Industry Managers Patients & Their Advocacy Groups Institute Staff Congress Scientist Council Members Ad Hoc Advisors Health Professionals Industry Scientists We Are All Stakeholders NIH Grant Institute National Advisory Councils Scientific Review Panel Researcher Congress Institute Director Program Officer Stakeholders Wikimedia [Source Larry Tabak] View slide
  • Why You Can Help The Story of Meredith
  • A Community Where Knowledge is Readily Shared Knowledge is Shared – Data Less So [Source NCBI]
  • Policies in Place – More Needed  Office of Science & Technology Policy (OSTP) – John Holdren (National Science Advisor) memo  Open Data 2.0  NIH Data sharing policy  NIH Genome Wide Association Studies (GWAS) and genomic data sharing policy  Issues – Rights of the patient vs the value to the community – De-identification is a myth Policies
  • So Much Data! Volume
  • Data Types across NIH Interests Other ‘omic Imaging Phenotypic Clinical Genomic Exposure Courtesy of NHGRIComplexity
  • Problems to Solve Re Data • Locating • Accessing • Organizing, managing, and processing • New analytics • Presenting • Disseminating • Training Problems
  • Big Data BIG DATA NIH Big Data to Knowledge Initiative for Research Data BD2K Solution?
  • BD2K: Web Site Now Live bd2k.nih.gov
  • One Activity - The Commons Data The Long Tail Core Facilities/HS Centers Clinical /Patient The Why: Data Sharing Plans The Commons Government The How: Data Discovery Index Sustainable Storage Quality Scientific Discovery Usability Security/ Privacy Commons == Research Object Sandbox == Collaborative Environment The End Game: KnowledgeNIH Awardees Private Sector Metrics/ Standards Rest of Academia Software Standards Index BD2K Centers Cloud, Research Objects, Business Models
  • WhereThisCommunityCan Help?  Interface toWikimedia initiatives?  Annotation?  Methods etc. from gaming, computer science, behavioral science statistics and much more?  A million patients for health (?)
  •  The biomedical research enterprise is undergoing a major ‘phase change’ to become a Digital Enterprise  Your help is sought in being part of this transformation  We want to learn from Wikimedia Closing Thoughts
  • Questions?