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!

philip.bourne@nih.gov