How to Get Identified Data for Research or Recruitment

Why get identified data?

You plan to use the data to recruit study participants, or your research project requires information such as:

  • Names, Medical Record Numbers (MRNs), SSN, email, phone, address or other identifying information
  • Clinical notes

Examples:

  • I have MRNs and need data for these patients to conduct follow-up research
  • I need ongoing and updated data on consented patients for my study
  • I want to mine "notes" fields from the EHR
  • I want to use APeX data to recruit specific patients that meet certain criteria

Your options:

  • Recruitment Services
    Get help building your cohort from EHR data, developing effective recruitment materials, and more. An Honest Broker Service is available to mail letters to potential participants. After the initial free hour, recharge fees will apply.
  • Data Extraction Consultation
    If your research team will handle patient contact, obtain the data by working with an expert in the data source best suited to your project. After the initial free hour, recharge fees will apply.
  • Comparing identified data, in brief:
  • Clarity - closest data to APeX; clinical notes available
  • Clinical Data Warehouse (CDW) - concise, pulls common data in Clarity into one field
  • OMOP - uses a national common data model on data derived from PCORnet pSCANNER
    Data is further from original state and there is potential to lose information

UC Health data may be requested, but processing time can be lengthy.

Scholarships available:

A CTSI Scholarship Fund for up to 8 hours of data extraction services is available to eligible applicants who have qualified & unfunded research projects. Eligibility requirements include: 

  • The data extraction estimate provided by CTSI/ARS analysts during the 1-hour free consultation must be no more than 15-20 hours.
  • The applicant must attest that they have no dedicated funding for this project, and have limited access to discretionary funds that could be used for this purpose
  • Scholarships are limited to one per PI per fiscal year.

Complete a data extraction consult request for more details on this scholarship.

 

Compliance requirements

IRB approval and Secure File Sharing Environment (via RAE) required

Quick Disclosure System required
Other regulatory requirements may apply; consultant will provide guidance.

Working with clinical data? Preparation is key.

Be ready with adequate computing capabilities and tools for:

Use the APeX Pick List  or the ZSFG Pick List (Large Excel files via UCSF Box) to identify variables for your research and to define your cohort.

  • Diagnoses
  • Meds
  • Labs
  • Procedures
  • Flowsheet
  • Departments
  • Smart Data Elements