Data Democratization Using i2b2, Excel, REDCap in End-User Extracts Phillip_ng@urmc.rochester.edu

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

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

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

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

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

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

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

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

Excel Upload Or I2B2 Patient Set

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

Summary of Integrations

End User Exporting

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

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

Full Screen REDCap

Full Screen Redcap Popup Box

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

Too Much Data

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

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

Example SmartData Note

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

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 “~”

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”

Projects Created as of 3/16

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”

How do I get this open-source awesomeness? i2b2 plugins available here, i2b2 1.7.05 https://github.com/URMC/i2b2_redi 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.

Questions? Philip Ng Phillip_Ng@urmc.Rochester.edu Research Integration Group Lead HL7 Interface Development Group Lead University of Rochester Information Systems Division 30 Corporate Woods, Suite 350 Rochester, NY 14642 Office Phone: 1(585)758-2026