Data! Philip E. Bourne Ph.D. Associate Director for Data Science National Institutes of Health

Some Context: NIH Data Science History 6/12 2/14 3/14 Findings: Sharing data & software through catalogs Support methods and applications development Need more training Need campus-wide IT strategy Hire CSIO Continued support throughout the lifecycle

My Bias  Still a scientist  A funder who still thinks like a PI  Not yet attuned to the federal system  Big supporter of OA via PLOS and others

Data – A Few Observations …  We talk about the promise of big data, but we don’t even know the value of little data (aka could “Big Data” be the new “AI”)  Good data is expensive in terms of time and money  Looking at data retroactively is really expensive  Good data begats trust; trust begats community; community is God  The way we support scientific data currently is not sustainable  There is no workable business model currently for scientific data

Data – A Few NIH Observations … 1.We have little idea how much we spend on data – estimated over $1bn per year 2.We have even less idea how much we should be spending  Point 2 is part of a culture clash between the more observational history of biomedicine and the new analytical approach to discovery

ADDS Mission Statement To foster an ecosystem that enables biomedical research to be conducted as a digital enterprise that enhances health, lengthens life and reduces illness and disability

What Problems Are We Trying to Solve? Possible Solutions  Sustainability – 50% business model  Efficiency – sharing best practices in longitudinal clinical studies  Collaboration - identification of collaborators at the point of data collection not publication  Reproducibility – data accessible with publication  Integration – phenotype homogenization  Accessibility – clinical trials registration  Quality – sharing CDEs across institutes  Training – keeping trainees in the ecosystem

The Data Ecosystem Community Policy Infrastructure Sustainable business model Collaboration Training

Raw Materials to Seed the Ecosystem  NIH mandate & support  ADDS team of 8 people  Intramural participation of over 100 team members across ICs  Funding through BD2K: –~$30M in FY14 –~$80M in FY15 –....

Example Communities –NIH 20/27 ICs –Agencies NSF DOE DARPA NIST –Government OSTP HHS HDI ONC CDC FDA –Private sector Phrma Google Amazon –Organizations PCORI RDA, ELIXIR CCC CATS FASEB, ISCB Biophysical Society Sloan Foundation Moore Foundation

Example Policies –Clinical data harmonization –Data citation –Machine readable data sharing plans on all grants –New review models, audiences etc. Open review Micro funding Standing data committees to explore best practices Crowd sourcing

Example Infrastructure: The Commons Data The Long Tail Core Facilities/HS Centers Clinical /Patient The Why: Data Sharing Plans The Commons Government The How: Data Discovery Index Sustainable Storage Quality Scientific Discovery Usability Security/ Privacy The End Game: Knowledge NIH Awardees Private Sector Metrics/ Standards Rest of Academia Software Standards Index BD2K Centers Cloud, Research Objects, Business Models

What Does the Commons Enable?  Dropbox like storage  The opportunity to apply quality metrics  Bring compute to the data  A place to collaborate  A place to discover

[Adapted from George Komatsoulis] One Possible Commons Business Model HPC, Institution …

Pilots Around A Virtuous Cycle Expect a Funding Call

Training & Diversity  Training & Diversity Goals: –Develop a sufficient cadre of diverse researchers skilled in the science of Big Data –Elevate general competencies in data usage and analysis across the biomedical research workforce –Combat the Google bus  How: –Traditional training grants –Work with IC’s on a needs assessment –Standards for course descriptions with EU –Work with institutions on raising awareness –Partner with minority institutions –Virtual/physical training center(s)?

What Can Open Access Publishers Do?  Work with NIH on supporting data citation  Experiment with the idea of micropublication  Other?

NIH … Turning Discovery Into Health