1. Data Democratization Using i2b2, Excel, REDCap in End-User Extracts

2. Data “Democratization”
Facilitate access to clinical data in a end-user drag and drop, guided, fully self-service experience

3. UR Medicine Overview
Academic Health Center located in Rochester, New York
Four hospitals (including cancer center and children’s hospital) with 1,364 beds
UR Medicine clinical enterprise oversees*:
71,371 inpatient discharges
234,742 ED visits (includes Urgent Care)
40,498 ambulatory surgeries
1,691,135 outpatient visits
200+ clinics in a 115-mile radius
1,537 specialty and primary care attending physicians 
744 residents
18,500+ clinicians using eRecord
*Figures are based on FY2015 reports

4. Users Q1:540 Q2:550 Q3:612 Queries Q1: 1995 Q2: 1025 Q3: 1364
General 2016 i2b2 Statistics
Users
Q1:540
Q2:550
Q3:612
Queries
Q1: 1995
Q2: 1025
Q3: 1364
Distinct Concepts
Q1: 1696
Q2: 729
Q3: 808

5. Preparatory to Research
Pathways
Simple attestation, immediate access to perform deidentified excel exports
Preparatory to Research
On-Demand ETLs
Identification of datamart via Excel upload or previous query
IRB Approved Projects

6. Data Access Validate Apply Data Governance Description of project
Documentation
IRB Approval
Validate
Honest Broker Review
Minimal Necessary
ETL Manager
Data Access
ETL on demand
Custom i2b2 mart

7. Provisioning Process Production workflows:
IRB
Preparatory
Preparatory is generally deidentified, limited excel output, no REDCap

8. IRB Project Production workflows: IRB Workflow: IRB Preparatory
Confirmation
Upload abilities
“Re-Identification”

9. Project Creation Process
Investigators can choose desired data elements to be populated into a data mart, vetted by broker
Datamart is late-bound, loaded into local observations in each end-user mart

10. Excel Upload Or I2B2 Patient Set

11. Storage Execution Results Back End Process
Uploaded Excel, Redcap merge data , patient enrollment lists are kept separately from i2b2
Storage
We have our “JavaServices” component create, delete, ETL datamarts, compartmentalized into each mart.
Execution
We have over 500 individual i2b2 data marts, sharing common concepts, metadata.
Results

12. Summary of Integrations

13. End User Exporting

15. A Message From Our Regulators
Access to data is granted via excel direct download or via tight integration with REDCap

16. Self-Service Aspect 1 record, 1 encounter pull Excel - Fu
Class
Crash Course
Guidelines on ontology use
Framework for future lessons and support
Excel
1 record, 1 encounter pull
Excel - Fu
Questions raised re: pivoting, better output
REDCap
Complicated setup allows for pivoting on specific events
Biostats, DDP 
Granular control & Validation

17. Full Screen REDCap

18. Full Screen Redcap Popup Box

19. Redcap I2b2 CDW Enrolled Patients
Pulls enrolled patients, matched before ETL into datamart
For Each REDCap Event
Look at the mappings (red) and match requested concepts to observations (blue) for time periods where events (green) occur.
Look at aggregate function
Output data per patient/event/form
Concepts
Projects
has:
REDCap
Events
Observations
Matches/ joins
REDCap
Forms
Enrolled
Patients
Matches/ joins
REDCap
Fields
Visits
REDCap
Mappings

20. Too Much Data

21. Use Cases
REDCap event schedule is set up monthly
Questionnaire is built identically in trial data management system
End user sends questionnaires to be filled out by patients once a month
Excel Export, most recent data element is the pivot option (default)
Export a common questionnaire filled out online by patients as a measure

22. Ontologies For MyChart Data
EMR Special Data ETLs
Engagement & Usage
Messaging Workflows
Smart Codified Notes
Questionnaires
Biweekly ETL
Epic Userweb

23. Example SmartData Note

24. Form has a Y/N Additional Use Cases Build as Y/N
Memo box with items matching, all dates
“True” constants (Gender, Age)
Form has a Y/N

25. Gotchas Reliant on external timepoints
REDCap design tends to be lacking
Edit Projects before integration
Timepoints, not an afterthought
Scheduling the surveys
Validations. OFF.
Aside from dates, validations are a pain
ALPHA for medication, source has “~”

26. More Gotchas Moving Goalposts
Questionnaires design and notes should occur before the study
The most recent questionnaire version is maintained on the ontology
Same Downsides as i2b2
Not Particularly Fast
Investigators lost on how things are documented, - smoking history - scans - notes
Careful Naming
Investigators assume things
“Deidentified NOT MRN”

27. Projects Created as of 3/16

28. REDCap “Chart Reviews”
Usage Statistics
2015 : 765
2016 : 916
Excel Generations
6660 Concepts mapped
2015 : 231, 2016 : 88
REDCap Syncs
2015 : 468
2016 : 320
REDCap “Chart Reviews”

29. How do I get this open-source awesomeness?
i2b2 plugins available here, i2b
Epic Clarity ETL via Epic UserWeb
Wordpress modifications, java service, plugins
Do not support Postgres or SQL Server yet.
Working on a faster merge/pivot using excel process.

30. Questions?
Philip Ng Research Integration Group Lead HL7 Interface Development Group Lead University of Rochester Information Systems Division 30 Corporate Woods, Suite 350 Rochester, NY Office Phone: 1(585)