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
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. Motivation: The Story of Meredith
http://fora.tv/2012/04/20/Congress_Unplugged_
Phil_Bourne
Stephen Friend
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. 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. An Example of That Promise:
Comorbidity Network for 6.2M Danes
Over 14.9 Years
Jensen et al 2014 Nat Comm 5:4022
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. The BD2K Program is Central
to the Mission
Planned – Black; Available- Green
12.
13. 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
https://datascience.nih.gov/bd2k/funded-programs/centers
15. Building The Data Ecosystem
Community
Policy
• Sustainable
business
model
• Collaboration
• Training
Data Science Infrastructure
16. Building The Data Ecosystem
Community
Policy
• Sustainable
business
model
• Collaboration
• Training
Virtuous
Research
Cycle
Data Science Infrastructure
18. 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
http://www.nih.gov/news/health/aug2014/od-27.htm
19. 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!)
Five Big Problems to Solve:
Finding, Accessing, Interoperating with, and Re-using the data (FAIR principles)
Extending policies and practices for data sharing
Organizing, managing, and processing biomedical Big Data
Developing new methods and tools for analyzing biomedical Big Data
Training researchers who can use biomedical Big Data effectively
Photos: FC tweet; RK screen grab
Images of people from Infographic (NOTE: Image is just a placeholder—Jill will tweak)
Detailed Notes:
National Research Cohort <<OR name of study>>
>1 million U.S. volunteers committed to participating in research
Will combine a number of existing cohorts
Will include Dept of Veterans Affairs Million Veteran Program—note Veteran is singular per http://www.research.va.gov/MVP/
16 million hospital inpatient events (24.5% of total), 35 million outpatient clinic events (53.6% of total) and 14 million emergency
department events (21.9% of total
