• Do you have identifiable data in Data QUEST or only de-identified data?

Data QUEST data sources include both identified and de-identifed data. With appropriate IRB approvals and data use agreements with the clinical partners, which we can help you navigate, identifiable data can be made available. For example, Data QUEST can be used to identify individuals for recruitment who might qualify for a randomized controlled trial and to extract electronic health record data related to these individuals.

  • What kind of data are available?

Please use FindIT to explore the types of data we have. Data originate from electronic health record systems at the primary care clinics we partner with. These data include demographics, problems and diagnoses, common lab tests, medications, vitals, visit information, procedures, family history, and other commonly coded pieces of information typically tracked by the electronic health record system.

  • How much does it cost to get a data extraction?

Prices vary depending on complexity of the query and how many organizations you want to query. Our team will work collaboratively with you to assess your research need(s) and to develop a fee structure that aligns with your budget.

  • How far back do the records go?

It depends on the organization, but we suggest using data starting in 2008.

  • What kind of agreements do I need to have?

This varies, depending on the work proposed.

Work with data extracts from the Data QUEST Clinical Data Repository housed at the University of Washington are fully deidentified and do not constitute research with human subjects.

For identifiable data, human subjects approval (as appropriate) and a data use agreement with sites are a minimum. We have worked to streamline the agreements to minimize impacts on the individual researcher and our practice partners. Please send us a request and we can give you further information specific to your needs.

  • Can I get information contained in text notes?

Not at this time. However, it is possible to search through the coded data to identify the patients and records to use to search through notes and we can help you partner with the practices to pursue access to the text notes.

  • Do the practices all use the same coding system?

No. Our practices have unique and different electronic health record systems and unique clinical practice methods that lead to varying use of coding systems. Most of the practices do use ICD-9 and CPT codes and we have standardized other codes like lab tests to help speed your use of the data. It is always good to look at patterns of variation of code use in the dataset you are interested in and we can help you discover the source of variations.