Presentation at OpenCon, Washington DC, November 16, 2014. Highlights the need for open science to accelerate cures and improved health outcomes, while acknowledging much has been accomplished already through open initiatives, with particular reference to the work of NIH.

1. The Importance of Open Science to
Human Health
Philip E. Bourne, PhD
Associate Director for Data Science
National Institutes Health
OpenCon
November 16, 2014

2. 1918 Spanish Influenza Ward at Camp
Funston, Kansas
http://www.army.mil/-images/2008/09/24/22729/army.mil-2008-09-25-103608.jpg

3. A Few Details
 3-6% of the world’s population died – 50-100,000,000
 It was called Spanish flu because Spain reported true
mortality data and it was mistakenly considered the
origin
 At a time of war information was not openly shared
regarding the pandemic

4. Pandemic Modeling is Important:
The Story of Meredith
http://fora.tv/2012/04/20/Congress_Unplugged_
Phil_Bourne

5. We Have Seen Amazing Advances..
But…
World Climate Report 2011
CIA World Fact Book

6. Notwithstanding we need to do
better…

7. Some Current Healthcare
Shortcomings
 Number of drugs is too small and time to market too
long
 Rare diseases are ignored
 Clinical trials are too limited in the number of patients
and too expensive
 Education & training does not match well to current
market needs
 Research is not cost effective
– Not easily replicated
– Too slow to disseminate

8. The NIH Has Been a
Leader in Open Science

9. We are entering an era of
further disruption

10. Mission Statement
To foster an OPEN ecosystem that
enables biomedical* research to be
conducted as a digital enterprise that
enhances health, lengthens life and
reduces illness and disability
* Includes biological, biomedical, behavioral, social,
environmental, and clinical studies that relate to understanding
health and disease.

12. Elements of The Ecosystem
Community
Policy
Infrastructure
• Sustainability
• Collaboration
• Training

13. Elements of The Ecosystem
Community
Policy
Infrastructure
• Sustainability
Collaboration
• Training
Virtuous
Research
Cycle

14. Policies – Now & Forthcoming
 Data Sharing
– Genomic data sharing announced
– Data sharing plans on all research awards
– Data sharing plan enforcement
• Machine readable plan
• Repository requirements to include grant numbers
http://www.nih.gov/news/health/aug2014/od-27.htm

15. Policies - Forthcoming
 Data Citation
– Goal: legitimize data as a form of scholarship
– Process:
• Machine readable standard for data citation (done)
• Endorsement of data citation for inclusion in NIH bib
sketch, grants, reports, etc.
• Example formats for human readable data citations
• Slowly work into NLM/NCBI workflow

16. Infrastructure - The Commons
http://100plus.com/wp-content/uploads/Data-Commons-3-
1024x825.png

17. Community – BD2K Awards –
Dedicated to Sharing

18. 1) Build an OPEN digital framework for data
science training:
NIH Data Science Workforce Development Center
1) Develop short-term training opportunities:
Courses, educational resources, etc.
1) Develop the discipline of biomedical data
science and support cross-training – OPEN
courseware
Community: Training
Data Science Training Goals
All goals have a diversity component and manate

19. You have the power to make a
difference…
Either directly or indirectly through
your health care information

20. NIHNIH……
Turning Discovery Into HealthTurning Discovery Into Health
Come Join Us!Come Join Us!
philip.bourne@nih.gov