Translational Informatics Core

1. Translational Informatics Core Michael G. Kahn, MD, PhD Translational Informatics Core Director 16 January 2014

2. Specific Aims (or Objectives)New Grant Application Informatics has presence in three parts • Integrated Home Leadership: “Implement systems to coordinate the access, delivery and sharing of data resources in a secure and compliant environment for translational researchers and communities.” • Clinical and Translational Resources and Services: “Research Data Management and Integration Services.” • Data Sharing Plans

3. Organizational Model

4. 1. “Implement systems to coordinate the access, delivery and sharing of data resources in a secure and compliant environment for translational researchers and communities.” Key idea: “Flexible, yet robust model for data management, integration and distribution that provides investigators with multiple technical approachesthat are within an overall management frameworkthat meets institutional oversight and data security”

5. Data Integration: Multiple Strategies • Data integration/sharing @ Anschutz Medical Campus • Focus on newly funded campus-wide Enterprise Clinical and Research Warehouse (CREW) • Data integration/sharing across affiliates • Focus on distributed research networks (CHORDS) • CHORDS is based on PopMedNet

7. CREW: Activities to date • Michael Kahn started 1 August @ 30% FTEMichael Ames (Associate Director) started 1 OctoberDonna Brown (DFA) started 15 November Three “necks on the line” for project execution and financial performance • We got space: Down the hall from Dean/VCHA • Creating governance, technology, staffing, and financial plans • Seeking input on use cases – send to crew@ucdenver.edu • Phone calls / visits to other institutions

8. Proposed CREW Organization and Governance Anschutz Executive Committee Strategic Alignment Investments Vision Leadership Center Biomed Informatics. Governance - TBD CREW Steering Committee CU/AMC IT Governance Planning Prioritization Budgeting AEC Advisory Issue Resolution Compliance Monitoring Program Monitoring Communication CU/AMC Stakeholders & Analysts CU/AMC Data Custodians and IT Information Delivery Group Security & Compliance Group Data Management Group Subject Matter Experts providing input. Not permanent members of governance group. Subject Matter Experts providing input. Not permanent members of governance group. Architecture Updates Portfolio Recommendations Data Quality Data Standards Domain Source Mapping Audit Coordination IRB Coordination Honest Broker Compliance Monitoring Collaboration Advice Policies & Procedures Opportunity Identification Common Definitions Business Rules Quality Assurance User Liaison Services Oversight In Kind Contributors Vendors Service Providers CREW Analytics and Informatics IT Data Custodians Data Center Other Services Data Integration User Support Program Management Governance Support CREW Design & Build Data Quality Program Execution Ongoing Operations Software Hardware Consulting Program Management Build assistance Internal and External CREW “Customers” Create value and innovation through CREW Campus data and analytics utility

9. Learning from our colleagues

10. CHORDS: A distributed data sharing network

11. CCTSI experience with Distributed Data Sharing Networks

12. Orange data flows occur on a regular schedule Electronic Medical Record Research data mart (identified) Data warehouse Clinical Laboratory Pharmacy Honest Brokers Blue data flows occur when investigator poses a question Pathology Tumor Registry Molecular Biology Lab

13. 2. “Research Data Management and Integration Services.” • Key ideas: • Promote data sharing technologies • Use of widely-used data models • Use of controlled terminologies …..via standardized data collection forms • Develop “added value components” on a fee-for-service basis • Links into CHCO, UCH EPIC EHR for RedCap • Links to i2b2 data marts (EHR, RedCap) • Advanced bioinformatics analytics services • Beyond initial study design

14. Redcap Statistics

16. Bioinformatics Analytic Services

17. 3. Data Sharing • Key ideas • CCTSI will support data sharing requirements but will not “own” this process • Promote standard forms with known data models and terminology standards • Develop descriptions of data resources • Data dictionary documentation • With biostatistics & bioinformatics analytic cores – standardize documentation of analytic methods, transformations, normalizations • Develop data sharing agreement language with CU TTO

18. Other CTSA oriented projects/programs NEW SINCE JULY: PCORI CDRN: PEDSNet (informatics core leader; data contributor) PCORI CDRN: PORTAL (Kaiser – informatics consultant) PCORI PPRN: ImproveCareNow (data contributor) PCORI Methods: Data quality assessment in DRNs

19. Division of Biomedical Informatics /Personalized MedicineCenter for Biomedical Informatics

20. Questions for EAC • What should be CCTSI Big Data agenda? • CREW is “traditional” EDW • CHORDS will be limited in scope • New academic division/Center for Biomedical Informatics will host High Performance Computing cluster • What is your CTSA’s Big Data agenda?