The Importance of Open Science to Human Health
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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
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1918 Spanish Influenza Ward at Camp Funston, Kansas
http://www.army.mil/-images/2008/09/24/22729/army.mil-2008-09-25-103608.jpg
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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
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Pandemic Modeling is Important:The Story of Meredith
http://fora.tv/2012/04/20/Congress_Unplugged_Phil_Bourne
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We Have Seen Amazing Advances.. But…
World Climate Report 2011
CIA World Fact Book
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Notwithstanding we need to do better…
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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
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The NIH Has Been a Leader in Open Science
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We are entering an era of further disruption
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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.
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Elements of The Ecosystem
Community Policy
Infrastructure
• Sustainability• Collaboration• Training
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Elements of The Ecosystem
Community Policy
Infrastructure
• Sustainability Collaboration
• Training
VirtuousResearch
Cycle
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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
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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
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Infrastructure - The Commons
http://100plus.com/wp-content/uploads/Data-Commons-3-1024x825.png
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Community – BD2K Awards – Dedicated to Sharing
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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
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You have the power to make a difference…
Either directly or indirectly through your health care information
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NIHNIH……Turning Discovery Into HealthTurning Discovery Into Health
Come Join Us!Come Join Us!