Cancer Biomedical Informatics and Information Technology (CBIIT)

1. Cancer Biomedical Informatics and Information Technology (CBIIT) Warren Kibbe warren.kibbe@nih.gov March 11th, 2014

2. The NCI Center for Biomedical Informatics and Information Technology First and foremost: CBIIT is a service organization

3. CBIIT • CBIIT should provide cancer informatics and IT expertise to the NCI and cancer-focused organizations • CBIIT should facilitate informatics activities throughout the cancer community • CBIIT will engage cancer focused groups to facilitate informatics standards and activities

4. CBIIT will: • Promote open science, open research, open source, open access for cancer research through engagement with the cancer community and cancer patients

5. CBIIT core values • Honesty • Integrity • Service • Listening • Innovation • Respect • Assessment • Action

6. CBIIT culture • CBIIT will act with consideration of the impact of CBIIT’s policies and activities on the needs, priorities, velocity of the NCI  • CBIIT will understand the impact of delays and process on the productivity of the NCI and the extramural community • CBIIIT will seek to maximize the productivity and innovation of the NCI through IT and informatics

7. Culture changes for CBIIT • Stress the importance of listening • Change the culture from being experts to being glue • Project management has to be a part of that glue • Scientific computing and understanding of the scientific mission • Focus on removing barriers for our stakeholders

8. CBIIT re-engaged • Refocusing on the core mission of the NCI • Supporting the NCI • Supporting NCI initiatives • Supporting the Cancer Centers • Supporting the Cooperative Groups • Re-engage the patient advocates Trust is hard to gain and is easily lost

9. “Simple can be harder than complex: You have to work hard to get your thinking clean to make it simple. But it is worth it in the end because once you get there, you can move mountains” - Steve Jobs Complexity is not intelligence Simplicity is elegance - W. Kibbe

10. A few informatics highlights • NCI Cloud Pilots proposals just came in: ~40 were received • CTRP is moving toward piloting Data Table 4 • MATCH rules engine is moving forward • Hub Zero pilots continue – RAScentral will be one of the pilots • The Global Alliance for Genomics and Health was last week in London

11. What I consider critical • Lower barriers to data access, analysis and modeling for cancer research • Promote agility, flexibility, data liquidity across the cancer community • Promote Open Access, Open Data, Open Source, Open Science for cancer • Promote semantic interoperability, standards, CDEs and Case Report Forms • Support EVS, CDEs, CRFs

12. Highlights from the November National Cancer Forum Policy Summit

13. My outline Disruptive technologies Getting social What is big data? Open access to data

14. The future • Elastic computing ‘clouds’ • Social networks • Big Data analytics • Precision medicine • Measuring health • Practicing protective medicine Learning systems that enable learning from everycancer patient Semantic and synoptic data Intervening before health is compromised

15. Open Data Access • We need to provide data access to people outside of biomedicine who have the skills and training to mine and analyze data • More access will mean more innovation

16. Precision Oncology • The era of precision medicine and precision oncology is predicated on the integration of research, care, and molecular medicine and the availabilityof data for modeling, risk analysis, and optimal care How do we re-engineer translational research policies that will enable a true learning healthcare system?

17. Consent • In a learning healthcare system, we ‘learn’ from every patient who comes in for treatment. What is consent in this model? What is research? • What role is there for standardized consent? • Are there ways to reimagine translational research without consent? Would that help us?

18. Moving back to us • What can CBIIT do to help cancer centers move these goals forward? • First, what is CBIIT involved with now:

19. Some CBIIT activities • Support TCGA, TARGET and molecular cancer repositories • Cancer Genomics Data Commons • NCI Cloud Pilots • Engage with the Global Alliance for Genomics and Health (GA4GH) • Continue to organize and engage the cancer center informatics community through the Cancer Informatics for Cancer Centers (CI4CC)

20. Some CBIIT activities • Support genomic-based clinical trials such as: • MPACT • MATCH • Exceptional Responders

21. Some CBIIT activities • Try out new technologies • Hub Zero for collaborative web sites • Hub Zero as the foundation for the RAS Central community collaboration site for the RAS Project.

22. RAScentral.Org Search Content Rolling slides in this box with latest content highlights Welcome message News/Feeds Key content categories (ability for community to contribute)

23. RAS connections by publications

24. RAS connections by publication

25. Support Precision Oncology • Hold a workshop to bring together interested parties (Cancer Centers!) who are investing or want to invest in CLIA/CAP-certified NGS and incorporating those data for diagnostics and decision support

26. The goal: Steps toward a National Learning Healthcare System for Cancer Genomic Medicine • This is Big Data • Goal: • Build a truly transformative big data environment where we can learn the genomic contributions to the response (or non-response) from everycancer patient who is given a particular therapy. For this learning to occur we need to know treatments and outcomes.

27. Specific questions: Clinically actionable mutations • How to validate and call ‘clinically actionable mutations’ across a national/global network and establish evidence standards and provenance to enable trust • Can we ‘crowd-source’ this in a way that still lets us see the atomic-level evidence and build trust in the system?

28. Thank You! • Questions? Warren A. Kibbe warren.kibbe@nih.gov