1. ucrex.org UC-Rex: A model for cross-campus collaboration and data sharing UC-CSC Meeting San Francisco August 4, 2014 Doug Berman UCSF and Ayan Patel UCLA

2. ucrex.org 2 Today’s discussion: What is UC-ReX? Who is involved and what did we do? What technology was involved? How we worked together: Project structure Sponsorship, leadership, governance, workgroups and coordination Results and outcomes Results What we learned about working together

3. ucrex.org 3 UC- Research Exchange (UC-ReX) Background During the past few years UC Medical Campuses have made significant investment in Electronic Health Records Research is a key mission at each campus We recognize the power in working together in research Medical campuses may share data in order to achieve a large population for our work

4. ucrex.org 4 UC-ReX Goals Five-Year Goal: Enable researchers and quality improvement specialists to query and analyze clinical data collected at the point of care at all UC medical campuses for research or quality improvement purposes under a common cross- institutional IRB approval process (Trust/Rely) and in a manner that preserves privacy.

5. ucrex.org 5 UC-ReX Sponsors UC Office of the President Funding for Cross-UC Data Sharing$5 million/5 years (July 2011- 2016) UC - BRAID Biomedical Research Acceleration, Integration & Development Local CTSA’s (Clinical Translational Science Awards) Campus CIO’s

6. ucrex.org Demonstration : UCReX Data Explorer (SHRINE) https://ucrexi2b2.ucsf.edu/

7. ucrex.org Governance Structure UC BRAID UC ReX Steering Technology Strategy (Lisa Dahm, UCI) Technical Implementation (Lisa Dahm, UCI) Data Harmonization (Davera Gabriel, UCD) User Support (Mini Kahlon, UCSF) Data Quality (Doug Bell, UCLA) Working Groups  1 voting + 1 non- voting member from each UC  Simple majority  Rotating Chair  PI from each UC CTSA  Budgetary oversight  Review quarterly status reports http://www.ucbraid.org/informaticsmdashuc-rex.html

8. ucrex.org Working Groups Specify use cases Provide functional gap analysis Propose technology roadmap Technology Strategy Ensure that infrastructure & critical software are deployed & maintained Technical Implementation Ensure semantic interoperability Oversee data quality Data Harmonization Define processes, create SOPs Coordinate user training & support Design UCReX Website, roll-out pilot User Support Review completeness and consistency of data across campuses Identify opportunities to improve data quality Data Quality

9. ucrex.org 9 Technology Strategy Identify use cases Review and select technologies and partners Sets technical direction

10. ucrex.org 10 UC-ReX Use Cases Support Clinical Trials and Recruitment Clinical studies are challenging It is difficult to identify and recruit appropriate research subjects. Clinical studies may take years to recruit sufficient populations to support conclusions; many fail for lack of patients Performing studies in larger populations may make many studies possible. Quality comparisons among sites to identify best practices Research Questions on Retrospective data

11. ucrex.org 11 Technical Implementation Open source software developed at Harvard i2b2 – Informatics for Integrating Biology and the Bedside Scalable informatics framework that enables clinical researchers to use existing clinical data for discovery research https://www.i2b2.org/ SHRINE - Shared Health Research Information Network System for enabling clinical researchers to query across distributed hospital electronic medical record systems https://open.med.harvard.edu/wiki/display/SHRINE/SHRINE++Basics 1 Proxy Server, 2 Application Servers, 1 Database Server Proxy Server – Apache i2b2 Application Server – jBoss SHRINE Application Server – Tomcat Database Server – Oracle/SQL Server UCSF, UCLA, UCD – Oracle UCI, UCSD – SQL Server

12. ucrex.org 12 What’s at each site Unique ETL - Moves data to harmonized dataset i2b2 database Web-site for queries Management agent Local provisioning for access Local support for users

13. ucrex.org Central Node (located at UC Davis-MC) Data remain at each UC UCReX Network Topology The Central Management Node (CMN) is a webapp deployed to complement SHRINE – as agent or manager Provides a central point for monitoring nodes and gathering information

14. ucrex.org 14 UC-Rex Architecture

15. ucrex.org 15 Data Harmonization Develop/determine ontology to reference source data from each site In order to query all sites, we all must speak the same language 5 different EMR implementations (4 sites with Epic EMR – Not much help) Clinical workflows implemented differently Different modules at different stages of deployment What about legacy data? Types of Medical Data Demographics – Local source data mapped to various standards from CDC, WHO, ISO, HL7 Diagnoses and Procedures – ICD9 Standard Terminology used consistently across all sites for billing/finance Lab Results Different laboratories with different equipment Different reference ranges and units for the same lab Medications Maintaining Consistent Ontology GitHub repository set up to ensure each site has the same ontology

16. ucrex.org 16 User Support Communicate with local users Develop websites, documentation Provide training and support Develop support protocols and communication among site-based support groups Implement processes for sharing identified data (IRB approvals, data sharing agreements, request process and secure delivery of results) Receive feedback from use community 16

17. ucrex.org 17 Data Quality Discovery data anomalies by querying the i2b2 databases Look at trends of counts of data types by year from each site View distribution of demographics One site had a unreasonably high percentage of a certain race, upon investigation it was discovered that that race was used as a default value Lab Results Look at medians and means for each lab type Discovered some lab units were not converted to the appropriate unit agreed upon in Data Harmonization Continue to slice and dice data and look at it from different perspectives Investigate potential issues - feedback discoveries to Technical Implementation and Data Harmonization

18. ucrex.org 18 Lessons learned Balance Project Goals Research project versus IT project to support research Focus on delivery Expect institutional differences Infrastructure, organization, approval and change processes will differ at each institution Time lines needed to adapt to diversity among institutions

19. ucrex.org 19 Lessons learned (continued) Project management was key Program management - central coordination and decision making Site level – planning resources and deliverables Virtual work – Conference calls and screen shares are effective Team members from each site work together directly ‘Perfect is the enemy of good’

20. ucrex.org 20 UCReX –Team UCD Kent Anderson Nicholas Anderson UCSD Elizabeth Bell Davera GabrielHyeon-eui Kim Samuel MorleyLucila Ohno-Machado Travis NaglerPaulina Paul UCI Yi-Cheng (Andrea )Hwang UCSF Douglas Berman Lisa Dahm Robert Hink Ray PabloBhuwan Karki Dana Ludwig UCLA Douglas BellVijay Rayanaker Robert FollettKimberly Romero Ayan Patel Leslie Yuan Marianne Zachariah Program Manager Lattice Armstead

21. ucrex.org Questions 21