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  1. 1. Data Science at NIH with Emphasis on Health Policy and Management October 6, 20145 Philip E. Bourne PhD, FACMI
  2. 2. Why All the Fuss?
  3. 3. We are at a Point of Deception …  Evidence: – Google car – 3D printers – Waze – Robotics – Sensors From: The Second Machine Age: Work, Progress, and Prosperity in a Time of Brilliant Technologies by Erik Brynjolfsson & Andrew McAfee
  4. 4. Example - Photography Digitization Deception Disruption Demonetization Dematerialization Democratization Time Volume,Velocity,Variety Digital camera invented by Kodak but shelved Megapixels & quality improve slowly; Kodak slow to react Film market collapses; Kodak goes bankrupt Phones replace cameras Instagram, Flickr become the value proposition Digital media becomes bona fide form of communication
  5. 5. We Are At a Point of Deception The 6D Exponential Framework Digitization of Basic & Clinical Research & EHR’s Deception We Are Here Disruption Demonetization Dematerialization Democratization Open science Patient centered health care
  6. 6. Motivation: The Story of Meredith Phil_Bourne Stephen Friend
  7. 7. “And that’s why we’re here today. Because something called precision medicine … gives us one of the greatest opportunities for new medical breakthroughs that we have ever seen.” President Barack Obama January 30, 2015
  8. 8. Precision Medicine Initiative  National Research Cohort – >1 million U.S. volunteers – Numerous existing cohorts (many funded by NIH) – New volunteers  Participants will be centrally involved in design and implementation of the cohort  They will be able to share genomic data, lifestyle information, biological samples – all linked to their electronic health records
  9. 9. An Example of That Promise: Comorbidity Network for 6.2M Danes Over 14.9 Years Jensen et al 2014 Nat Comm 5:4022
  10. 10. Office of Biomedical Data Science Mission Statement To use data science to foster an open digital ecosystem that will accelerate efficient, cost-effective biomedical research to enhance health, lengthen life, and reduce illness and disability Goals expanded from recommendations in the June 2012 DIWG and BRWWG reports.
  11. 11. The BD2K Program is Central to the Mission Planned – Black; Available- Green
  12. 12. Center of Excellence for Mobile Sensor Data-to-Knowledge (MD2K) Santosh Kumar, Ph.D. Director, MD2K Center of Excellence Professor & Moss Chair of Excellence in Computer Science University of Memphis
  13. 13. MD2K Applications – CHF and Smoking
  14. 14. Building The Data Ecosystem Community Policy • Sustainable business model • Collaboration • Training Data Science Infrastructure
  15. 15. Building The Data Ecosystem Community Policy • Sustainable business model • Collaboration • Training Virtuous Research Cycle Data Science Infrastructure
  16. 16. BD2K Center BD2K Center BD2K Center BD2K Center BD2K Center BD2K Center DDICC Software Standard s Infrastructure - The Commons Labs Labs Labs Labs
  17. 17. Policies  Data Sharing – Genomic data sharing policy implemented – Data sharing plans on all research awards 2016 – Data sharing plan enforcement • Machine readable plan • Repository requirements to include grant numbers
  18. 18. Policies  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  dbGaP in the cloud (done!)
  19. 19. NIHNIH…… Turning Discovery Into HealthTurning Discovery Into Health