Philip E. Bournephilip.bourne@nih.gov

Philip E. Bournephilip.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 systemsand 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]

General PublicScientists

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

NIHGrant

InstituteNational Advisory

Councils

Scientific Review Panel

Researcher

Congress

Institute Director

Program Officer

Stakeholders

Wikimedia

[Source Larry Tabak]

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

ExposureCourtesy of NHGRIComplexity

Problems to Solve Re Data

• Locating

• Accessing

• Organizing, managing, and processing

• New analytics

• Presenting

• Disseminating

• Training

Problems

Big DataBIG DATA

NIH Big Data to KnowledgeInitiative 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

TheCommons

Government

The How:

DataDiscoveryIndex

SustainableStorage

Quality

Scientific Discovery

Usability

Security/Privacy

Commons == Research Object Sandbox == Collaborative Environment

The End Game:

KnowledgeNIHAwardees

PrivateSector

Metrics/Standards

Rest ofAcademia

Software StandardsIndex

BD2KCenters

Cloud, Research Objects,Business Models

Where This Community Can Help? Interface to Wikimedia 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?