The National Institutes of Health (NIH) is the primary agency in the United States responsible for biomedical and public health research. It spends $30.9 billion annually, with 83% of funding supporting over 300,000 scientists and 2,500 research institutions. Its mission is the pursuit of fundamental knowledge about living systems and applying that knowledge to extend healthy life and reduce illness. NIH manages a large amount of complex biomedical data across many domains that presents challenges to locate, access, organize, analyze, present, disseminate, and train others on. Its Big Data to Knowledge initiative seeks to address these challenges through creating a central data commons and collaborative research environment to maximize scientific discovery and knowledge generation from NIH funded research data

1. Philip E. Bourne
philip.bourne@nih.gov
OPEN KNOWLEDGE AND THE NATIONAL
INSTITUTES OF HEALTH OF THE UNITED
STATES

2. 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]

3. 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]

4. 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]

5. Why You Can Help
The Story of Meredith

6. A Community Where Knowledge
is Readily Shared
Knowledge is Shared – Data Less So
[Source NCBI]

7. 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

8. So Much Data!
Volume

9. Data Types across NIH Interests
Other ‘omic
Imaging Phenotypic
Clinical
Genomic
Exposure Courtesy of NHGRIComplexity

10. Problems to Solve Re Data
• Locating
• Accessing
• Organizing, managing, and processing
• New analytics
• Presenting
• Disseminating
• Training
Problems

11. Big Data
BIG DATA
NIH Big Data to Knowledge
Initiative for Research Data
BD2K
Solution?

12. BD2K: Web Site Now Live
bd2k.nih.gov

13. 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

14. WhereThisCommunityCan Help?
 Interface toWikimedia initiatives?
 Annotation?
 Methods etc. from gaming, computer
science, behavioral science statistics and
much more?
 A million patients for health (?)

15.  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

16. Questions?