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Quality Data          Collaboration




               Technology




      UC Research eXchange (UC-ReX)
                            COLLABORATIVE. ACCESSIBLE. EASY.
Our Mission
We improve UC collaborative research by enhancing
access to clinical data for research. We are:             Our Values
  • Building a technical infrastructure to allow cross-   Ethical – We comply with all
    institutional data, harmonized to enable comparison             regulatory and ethical
  • Optimizing the use of clinical data for research                standards
  • Informing data collection processes
                                                          Consensus Building – We
                                                                    engage stakeholders
                                                                    across clinical data
                                                                    activities to maximize
                                                                    alignment
                                                          Quality – We aspire to the
                                                                    highest standards to
                                                                    provide meaningful
                                                                    data
Our Vision                                                Ease – We will create easy
To promote innovation by enabling                                   access to EHR
collaboration and efficiencies in                                   derivative data
research through effective sharing of                     Diversity – We respect diversity
clinical data                                                       of ideas, people, and
                                                                    opportunities to identify
                                                                    the best solutions to
                                                                    improve collaboration
                                                                    in research
Initial Goal          Year 1 – [2011–2012]
   With UCOP       Enable cross-campus cohort identification
funding under
         BRAID
                     Develop representative governance
oversight, the
       UC ReX        Select and implement a technical
 Program was          infrastructure
    initiated to
  advance UC         Harmonize selected data
 collaborative
      research       Enable access and support
     capability.
Year 1 Budget (2011 – 2012)
                                                                         2011/12 Budget (Year 01) for UC Research Exchange

                                                                                                            Campus
                                                                                        UCSF        UCSD        UCI      UCLA       UCD   UC-wide    TOTAL

                              1. Management
                              Program Costs and Work Supervision                      140,000      10,000    15,000              60,000               225,000
                              Subtotal Management                                                                                                    225,000
                              2. Technology Strategy Workgroup
                              Compare UC use cases against i2b2 functionality           5,000       5,000     5,000     5,000     5,000                25,000
                              Subtotal Tech Strategy Workshop                                                                                         25,000
                              3. Implementation Workgroup
                              Outside contract: implementation                        225,000                                                         225,000
                              Local programming and support                            50,000      65,000    50,000    60,000    50,000               275,000
                              Cost of ramp up where no ETL effort already in place                                     30,000                          30,000
                              Subtotal Implementation                                                                                                530,000

                              4. Data Alignment Workgroup
                              Local data modeling                                      30,000      30,000    30,000    30,000    30,000               150,000
                              Subtotal Data Alignment Workshop                                                                                       150,000

                              5. Support Workgroup
                              Technical Writer                                         20,000                                                          20,000
                              Training and Cross-Campus Support                        50,000                                                          50,000
                              Policy (IRB, DUA, Data Access, etc)                      20,000                                                          20,000
                              Subtotal Support Workgroup                                                                                              90,000

                              Subtotal Supplies and Travel                              1,000       1,000     1,000     1,000     1,000                 5,000
                              adjustments                                             (36,300)     11,300                                             (25,000)
                              Totals Year 1                                          504,700     122,300    101,000   126,000   146,000         0   1,000,000
University of California Research eXchange (UC ReX)
                                                   Executive Committee




          Michael Hogarth, MD   Lisa Dahm, PhD                Douglas Bell, MD, PhD     Lucila Ohno-Machado, MD, PhD   Mini Kahlon, PhD
                  Davis               Irvine                       Los Angeles                  CHAIR, San Diego        San Francisco

                                                                                                                                                          Lattice Armstead
                                                                    Voting Members
                                                                                                                                                          Program Manager




              Kent Anderson        Jim Murry             Mohammed Mahbouba, MD, MS          Aziz Boxwala, MD, PhD      Douglas Berman
                  Davis              Irvine                     Los Angeles                    CHAIR, San Diego         San Francisco

                                                                   Non-Voting Members


Aziz Bowwala, Chair                   Davera Gabriel, Chair                                  Lisa Dahm, Chair                  Mini Kahlon, Co-Chair
     San Diego                               Davis                                                 Irvine                         San Francisco

                                           Lisa Dahm                                          Kent Anderson
 Michael Hogarth                                                                                  Davis                      Lattice Armstead, Co-Chair
      Davis                                   Irvine                                                                                San Francisco
                                                                                                Ayan Patel
                                          Douglas Bell                                            Davis
  Charles Boicey                                                                                                                  Samuel Morley
                                          Los Angeles
      Irvine                                                                                   Travis Nagler                         Davis
                                                                                                   Davis
                                     Mohammed Mahbouba
  Naveen Ashish                                                                                 Ray Pablo                    Yi-Cheng “Andrea” Hwang
                                         Los Angeles
      Irvine                                                                                      Irvine                               Irvine

                                         Hyeon-eui Kim                                         Douglas Bell
   Douglas Bell                                                                                Los Angeles                         Douglas Bell
                                           San Diego
   Los Angeles                                                                                                                     Los Angeles
                                                                                                Joe Franco
                                        Douglas Berman                                         Los Angeles
 Douglas Berman                                                                                                                    Ustun Yildiz
                                         San Francisco
  San Francisco                                                                                Ustun Yildiz                         San Diego
                                                                                                San Diego
                                                                                                                                Kimberly Romero
                                                                                             Douglas Berman
                                                                                                                                  San Francsico
                                                                                              San Francisco

                                                                                              Bhuwan Karki
                                                                                              San Francisco
     Technology                       Data Harmonization                                 Technical Implementation                   User Support
Work Group Accomplishments Year 1

 Governance
     Selected i2b2 SHRINE technology
     Initiated workgroups
     Hired program manager Data Harmonization
     Developed IRB Protocol      Selected initial data (Demographics: age, race,
                                    ethnicity, marital status; Diagnosis – ICD-9)
                                  Developed semantic rules and harmonized data
                                  Supported target ontology development
             Technology           Documented data dictionary
              Identified prioritized demonstration projects and developed
                 selection criteria
Work Group Accomplishments – Year 1
Technical Implementation
     Implemented Data Explorer cohort discovery
      (powered by i2b2 SHRINE)
        Oversaw technology solution vendor
           (Recombinant)
          Deployed i2b2 SHRINE technology
           infrastructure at 4 sites (UCLA coming Q4)
          Developed target ontology and ETL
          Managed data loading, mapping and
          testing
                                            User Support
   Processed IRB request
                                                  Developed user support model
   Partnered to develop website
                                                  Developed requirements and
                                                   implemented user access to tool
                                                  Designed and partnered with Technical
                                                   Implementation to build website
                                                  Developed orientation and training tools
Completing Cohort Discovery
OUR OPPORTUNITY
                  There is additional work required to
                  complete initial goals.

                  The executive committee met to discuss
                  future planning and Year 2 goals.
Our Challenge            Year 2 Planned Deliverables

       Clinical data    Data Harmonization
         across UC         Implement semantic lifecycle process for next
                             phase data (labs, medications, vital statistics
  Medical Centers
                             and status)
         have been
        created and        Partner with Data Quality and Technical
                             Implementation to ensure data readiness
           stored on
           disparate       Assess ICD-10 requirements to ensure
                             readiness
platforms with little
   attention paid to           Data Quality (Proposed New Work Group)
    interoperability,
       semantics or                Identify and implement standards to
  reuse scenarios.                  ensure optimal data quality
Our Opportunity           YEAR 2 Planned Deliverables

  The UC biomedical          Technical Implementation
     campuses are in          Maintain i2b2 SHRINE
    different states of       Partner with Harmonization, and Strategy
      development in           workgroups
 terms of technology          Partner with User Support to update
   and user support.           website
 Appropriate balance                          User Support
      in infrastructure                        Expand support model to include
design will enable us                           required support
     to move forward                           Maintain and expand website
              together    Technology           Implement user Pilot
                             Monitor progress of i2b2 SHRINE
                             Propose sustainable model for technology
OUR OPPORTUNITY
                     Cohort
                    discovery
                  and identified
                     data go
                    together.

                                     We are
                                    analyzing
                                   solutions to
                                   enable next
                                      phase
                                    capability.
Our Challenge       Going Beyond Cohort Discovery
  Understanding
        campus
     readiness,
        industry              The Technology
benchmarks and                workgroup developed
                              criteria by which to
          cost to             assess demonstration
  implement will              projects to ensure that
         help us              selected projects are
                              feasible, relevant, and
     implement                add value.
     meaningful
       projects.
Our Challenge
         We will need to
         identify ways to     Proposed Demonstration
       transform legacy       Projects
      data into useable
      forms and gain a        • Medication Surveillance
  better understanding        • Clinical Outcomes of Spine Surgery
             of emerging      • Colorectal Surgery Outcomes
      technologies and        • DSRIP Diabetes Intervention
             data storage       Outcomes
   solutions needed to        • Next Generation Cancer Registry
   present robust sets
          of clinical data.
Strategic Plan Focus
Governance
   Develop fiscally sustainable model
   Market Data Explorer
   Engage and leverage partners and stakeholders
   Align with existing UC and partner capabilities and
   resources                                               data             reliability

Data and Quality
   Implement semantic life cycle process                           Reference         governance
                                                                   maintenance
   Improve data quality
Technology
   Maintain Data Explorer Tool                            technology        Collaborate
   Ensure site readiness for planned implementations
   Develop meaningful capabilities that enable research
   collaboration
Support
   Develop easy to use, valued user support
Our Opportunity
          We have
        proven the
   ability to share   UC understands the
           decision   value of UC ReX as
           making,
        implement     11+MM patient
   solutions, and     records.
         achieve a
   common goal.
     The future is    Others do too…
        promising.
Our Opportunity

   Members of the
           UC ReX
         Executive
   Committee and
          Technical
   Implementation
 Team make news
     at the Annual
           SHRINE
    Conference in
                      SHRINE Conference 2012 – Boston, Massachusetts
            Boston.   Lisa Dahm described the very impressive 11 million patient UCReX
                      SHRINE Implementation that is currently likely the largest near-real-
                      time clinical patient data resource.
                      https://cbmi.med.harvard.edu/shrine2012/presentations/shrine_dahm.pdf
Thank You! Gracias! Merci! Danke!
                     Funding Partner
 University of California Office of the President (UCOP)


                    Oversight Committee
                            BRAID
     S. Claiborne Johnston, MD, PHD, Chair (UCSF)
     Director, Clinical and Translational Science Institute
             Lars Berglund, MD, PhD (Davis)
      Director, Clinical and Translational Science Center
                Dan M. Cooper, MD (Irvine)
    Director, Institute for Clinical and Translational Science
           Steven Dubinett, MD (Los Angeles)
     Director, Clinical and Translational Science Institute
                    Gary S. Firestein, MD
     Director, Clinical and Translational Research Institute
Thank You! Gracias! Merci! Danke!

                Chief Information Officers
                Michael Minear
                Chief Information Officer, UC Davis Health
                Systems
                Jim Murry
                Chief Information Officer Health Affairs
                Information Services, Irvine
Participating   Jim Davis
UC Campus       Chief Information Officer, UC Los Angeles
   CIO’s        Ed Babakanian
                Chief Information Officer, UC San Diego
                Health Systems
                Elizar Harel
                Vice Chancellor for Information Technology
                and Chief Information Officer, San Francisco
                Mini Kahlon
                Chief Information Officer and Board Member,
                San Francisco CTSI

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UC BRAID UC-ReX

  • 1. Quality Data Collaboration Technology UC Research eXchange (UC-ReX) COLLABORATIVE. ACCESSIBLE. EASY.
  • 2. Our Mission We improve UC collaborative research by enhancing access to clinical data for research. We are: Our Values • Building a technical infrastructure to allow cross- Ethical – We comply with all institutional data, harmonized to enable comparison regulatory and ethical • Optimizing the use of clinical data for research standards • Informing data collection processes Consensus Building – We engage stakeholders across clinical data activities to maximize alignment Quality – We aspire to the highest standards to provide meaningful data Our Vision Ease – We will create easy To promote innovation by enabling access to EHR collaboration and efficiencies in derivative data research through effective sharing of Diversity – We respect diversity clinical data of ideas, people, and opportunities to identify the best solutions to improve collaboration in research
  • 3. Initial Goal Year 1 – [2011–2012] With UCOP Enable cross-campus cohort identification funding under BRAID  Develop representative governance oversight, the UC ReX  Select and implement a technical Program was infrastructure initiated to advance UC  Harmonize selected data collaborative research  Enable access and support capability.
  • 4. Year 1 Budget (2011 – 2012) 2011/12 Budget (Year 01) for UC Research Exchange Campus UCSF UCSD UCI UCLA UCD UC-wide TOTAL 1. Management Program Costs and Work Supervision 140,000 10,000 15,000 60,000 225,000 Subtotal Management 225,000 2. Technology Strategy Workgroup Compare UC use cases against i2b2 functionality 5,000 5,000 5,000 5,000 5,000 25,000 Subtotal Tech Strategy Workshop 25,000 3. Implementation Workgroup Outside contract: implementation 225,000 225,000 Local programming and support 50,000 65,000 50,000 60,000 50,000 275,000 Cost of ramp up where no ETL effort already in place 30,000 30,000 Subtotal Implementation 530,000 4. Data Alignment Workgroup Local data modeling 30,000 30,000 30,000 30,000 30,000 150,000 Subtotal Data Alignment Workshop 150,000 5. Support Workgroup Technical Writer 20,000 20,000 Training and Cross-Campus Support 50,000 50,000 Policy (IRB, DUA, Data Access, etc) 20,000 20,000 Subtotal Support Workgroup 90,000 Subtotal Supplies and Travel 1,000 1,000 1,000 1,000 1,000 5,000 adjustments (36,300) 11,300 (25,000) Totals Year 1 504,700 122,300 101,000 126,000 146,000 0 1,000,000
  • 5. University of California Research eXchange (UC ReX) Executive Committee Michael Hogarth, MD Lisa Dahm, PhD Douglas Bell, MD, PhD Lucila Ohno-Machado, MD, PhD Mini Kahlon, PhD Davis Irvine Los Angeles CHAIR, San Diego San Francisco Lattice Armstead Voting Members Program Manager Kent Anderson Jim Murry Mohammed Mahbouba, MD, MS Aziz Boxwala, MD, PhD Douglas Berman Davis Irvine Los Angeles CHAIR, San Diego San Francisco Non-Voting Members Aziz Bowwala, Chair Davera Gabriel, Chair Lisa Dahm, Chair Mini Kahlon, Co-Chair San Diego Davis Irvine San Francisco Lisa Dahm Kent Anderson Michael Hogarth Davis Lattice Armstead, Co-Chair Davis Irvine San Francisco Ayan Patel Douglas Bell Davis Charles Boicey Samuel Morley Los Angeles Irvine Travis Nagler Davis Davis Mohammed Mahbouba Naveen Ashish Ray Pablo Yi-Cheng “Andrea” Hwang Los Angeles Irvine Irvine Irvine Hyeon-eui Kim Douglas Bell Douglas Bell Los Angeles Douglas Bell San Diego Los Angeles Los Angeles Joe Franco Douglas Berman Los Angeles Douglas Berman Ustun Yildiz San Francisco San Francisco Ustun Yildiz San Diego San Diego Kimberly Romero Douglas Berman San Francsico San Francisco Bhuwan Karki San Francisco Technology Data Harmonization Technical Implementation User Support
  • 6. Work Group Accomplishments Year 1 Governance  Selected i2b2 SHRINE technology  Initiated workgroups  Hired program manager Data Harmonization  Developed IRB Protocol  Selected initial data (Demographics: age, race, ethnicity, marital status; Diagnosis – ICD-9)  Developed semantic rules and harmonized data  Supported target ontology development Technology  Documented data dictionary  Identified prioritized demonstration projects and developed selection criteria
  • 7. Work Group Accomplishments – Year 1 Technical Implementation  Implemented Data Explorer cohort discovery (powered by i2b2 SHRINE)  Oversaw technology solution vendor (Recombinant)  Deployed i2b2 SHRINE technology infrastructure at 4 sites (UCLA coming Q4)  Developed target ontology and ETL  Managed data loading, mapping and  testing User Support  Processed IRB request  Developed user support model  Partnered to develop website  Developed requirements and implemented user access to tool  Designed and partnered with Technical Implementation to build website  Developed orientation and training tools
  • 8. Completing Cohort Discovery OUR OPPORTUNITY There is additional work required to complete initial goals. The executive committee met to discuss future planning and Year 2 goals.
  • 9. Our Challenge Year 2 Planned Deliverables Clinical data Data Harmonization across UC  Implement semantic lifecycle process for next phase data (labs, medications, vital statistics Medical Centers and status) have been created and  Partner with Data Quality and Technical Implementation to ensure data readiness stored on disparate  Assess ICD-10 requirements to ensure readiness platforms with little attention paid to Data Quality (Proposed New Work Group) interoperability, semantics or  Identify and implement standards to reuse scenarios. ensure optimal data quality
  • 10. Our Opportunity YEAR 2 Planned Deliverables The UC biomedical Technical Implementation campuses are in  Maintain i2b2 SHRINE different states of  Partner with Harmonization, and Strategy development in workgroups terms of technology  Partner with User Support to update and user support. website Appropriate balance User Support in infrastructure  Expand support model to include design will enable us required support to move forward  Maintain and expand website together Technology  Implement user Pilot  Monitor progress of i2b2 SHRINE  Propose sustainable model for technology
  • 11. OUR OPPORTUNITY Cohort discovery and identified data go together. We are analyzing solutions to enable next phase capability.
  • 12. Our Challenge Going Beyond Cohort Discovery Understanding campus readiness, industry The Technology benchmarks and workgroup developed criteria by which to cost to assess demonstration implement will projects to ensure that help us selected projects are feasible, relevant, and implement add value. meaningful projects.
  • 13. Our Challenge We will need to identify ways to Proposed Demonstration transform legacy Projects data into useable forms and gain a • Medication Surveillance better understanding • Clinical Outcomes of Spine Surgery of emerging • Colorectal Surgery Outcomes technologies and • DSRIP Diabetes Intervention data storage Outcomes solutions needed to • Next Generation Cancer Registry present robust sets of clinical data.
  • 14. Strategic Plan Focus Governance  Develop fiscally sustainable model  Market Data Explorer  Engage and leverage partners and stakeholders  Align with existing UC and partner capabilities and resources data reliability Data and Quality  Implement semantic life cycle process Reference governance maintenance  Improve data quality Technology  Maintain Data Explorer Tool technology Collaborate  Ensure site readiness for planned implementations  Develop meaningful capabilities that enable research collaboration Support  Develop easy to use, valued user support
  • 15. Our Opportunity We have proven the ability to share UC understands the decision value of UC ReX as making, implement 11+MM patient solutions, and records. achieve a common goal. The future is Others do too… promising.
  • 16. Our Opportunity Members of the UC ReX Executive Committee and Technical Implementation Team make news at the Annual SHRINE Conference in SHRINE Conference 2012 – Boston, Massachusetts Boston. Lisa Dahm described the very impressive 11 million patient UCReX SHRINE Implementation that is currently likely the largest near-real- time clinical patient data resource. https://cbmi.med.harvard.edu/shrine2012/presentations/shrine_dahm.pdf
  • 17. Thank You! Gracias! Merci! Danke! Funding Partner University of California Office of the President (UCOP) Oversight Committee BRAID S. Claiborne Johnston, MD, PHD, Chair (UCSF) Director, Clinical and Translational Science Institute Lars Berglund, MD, PhD (Davis) Director, Clinical and Translational Science Center Dan M. Cooper, MD (Irvine) Director, Institute for Clinical and Translational Science Steven Dubinett, MD (Los Angeles) Director, Clinical and Translational Science Institute Gary S. Firestein, MD Director, Clinical and Translational Research Institute
  • 18. Thank You! Gracias! Merci! Danke! Chief Information Officers Michael Minear Chief Information Officer, UC Davis Health Systems Jim Murry Chief Information Officer Health Affairs Information Services, Irvine Participating Jim Davis UC Campus Chief Information Officer, UC Los Angeles CIO’s Ed Babakanian Chief Information Officer, UC San Diego Health Systems Elizar Harel Vice Chancellor for Information Technology and Chief Information Officer, San Francisco Mini Kahlon Chief Information Officer and Board Member, San Francisco CTSI