Finding Patient Data for Research

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.

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

Research Data Browser – Select which patients

Research Data Browser – Export Selected Fields

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

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

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”

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

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”