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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.
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The Importance of Open Science to Human Health
Philip E. Bourne, PhDAssociate Director for Data Science
National Institutes Health
OpenCon November 16, 2014
1918 Spanish Influenza Ward at Camp Funston, Kansas
http://www.army.mil/-images/2008/09/24/22729/army.mil-2008-09-25-103608.jpg
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
Pandemic Modeling is Important:The Story of Meredith
http://fora.tv/2012/04/20/Congress_Unplugged_Phil_Bourne
We Have Seen Amazing Advances.. But…
World Climate Report 2011
CIA World Fact Book
Notwithstanding we need to do better…
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
The NIH Has Been a Leader in Open Science
We are entering an era of further disruption
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.
Elements of The Ecosystem
Community Policy
Infrastructure
• Sustainability• Collaboration• Training
Elements of The Ecosystem
Community Policy
Infrastructure
• Sustainability Collaboration
• Training
VirtuousResearch
Cycle
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
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
Infrastructure - The Commons
http://100plus.com/wp-content/uploads/Data-Commons-3-1024x825.png
Community – BD2K Awards – Dedicated to Sharing
1) Build an OPEN digital framework for data science training:
NIH Data Science Workforce Development Center
2) Develop short-term training opportunities: Courses, educational resources, etc.
3) Develop the discipline of biomedical data science and support cross-training – OPEN courseware
Community: TrainingData Science Training Goals
All goals have a diversity component and manate
You have the power to make a difference…
Either directly or indirectly through your health care information
NIHNIH……Turning Discovery Into HealthTurning Discovery Into Health
Come Join Us!Come Join Us!
