Finding Patient Data for Research

1. Finding Patient Data for Research

2. Overview of Data Options Today • RDB – Research Data Browser – De-identified APeX data since 6/1/2012; Easy to get access; Can query without SQL • Code Lists – Enable you see what codes we have and how many instances of each code. Enables more precise data requests. Covers Meds, Diagnoses, Procedures; Easy to get access today. • UCRex – De-identified data from 5 UC Campuses; easy to get access; Query without SQL, but only returns patient counts per campus. • CDRC Data Requests – Request any PHI patient data from APeX or STOR; Requires consultation and possible re-charge for service, and IRB authorization • MyResearch – Secure server to store and analyze your patient data safely, without risk of Privacy breach.

3. Research Data Browser • Access to De-identified APeX data (after 6/2012) without IRB or SQL • Extract your selected data sets to CSV flat files for further analysis • Self Service – no need for IT consultation or recharge • To access: • https://ucsf.service-now.com/ess/order_accounts.do • Select “Research Data Tools Request” • To Learn the tool: • https://vimeo.com/116757748 • 43 minute training video

4. Research Data Browser – Select which patients

5. Research Data Browser – Export Selected Fields

6. Code Lists • One 26 Megabytes Excel Spreadsheet with common clinical codes • Each code has a text description; You can “search” the entire set of code descriptions for the condition of interest • Each code provides an approximate count of APeX patients are records with that code. • Select the codes to include in your cohort, and data requests are more accurate • Included codes are: • APeX Diagnoses, ICD9 and ICD10, • APeX Medication codes, generic names, therapeutic classes, pharmacology classes • Procedure codes – orders, transactions, OR Procedures, ICD9 procedures • Lab Result codes • Flowsheet Variables • Smartdata Variables • Department codes

7. Code Lists – where to get the file • URL for downloading Code Lists Excel Spreadsheet: • https://data.ucsf.edu/research/ucsf-data • Bottom of page, click “APeX Pick List” • https://ucsf.box.com/v/apex-picklist

8. UCRex • Query data from all 5 UC Campuses at one time • Easy-to-use i2b2 Query interface; requires no SQL or programming • Results: Count of patients at each campus meeting your conditions • Use: For preparing grants for new studies • Later extracts of record level data available upon request; this may require a recharge and coordination with investigators at each campus • Register for Access: • https://ucsf.service-now.com/ess/order_accounts.do • Sub-heading “Research Data Tools Request” • Under “Research Query Tools”, check box “UC ReX Data Explorer”

9. CDRC Data Requests • Required for Research use of identifiable patient data (PHI) • Requires: • Approved IRB request for the same data • Approval of a “manager” (or department chairman, for faculty) • A Recharge account number. Service recharged at a rate of $106/hour after the first 8 hours per Principal Investigator per Year • CDRC “Honest Broker” analysts will extract the “minimum necessary” IRB-approved patient data, and deliver it to you in Box or MyResearch • Request begins here, with a web-form • https://data.ucsf.edu/research/id-data - for documentation of process • http://accelerate.ucsf.edu/consult/data-extraction - to select the correct form for UCSF or non-UCSF investigators

10. MyResearch • MyResearch provides data storage space and programs for secure handling of PHI patient data. • MyResearch has been redesigned within the last year to be faster and easier to use. • First 10 Gigabytes per month per Principal Investigator is free; Recharge thereafter • For more details: • https://data.ucsf.edu/research/computing • To apply for Access: • https://ucsf.service-now.com/ess/order_accounts.do • Select “MyResearch Acct/User/Study Request”