Clinical Data Services
Whether you are ready to request specific clinical data or just want to find out what’s feasible for your study, we can help.
Obtaining Protected Clinical Data For Research
The Research IT Data Services team are tasked with being a primary resource for researchers to efficiently obtain EHR data from the UW Medicine Data Warehouse, with access to both current and historical data going back into the 1990’s. UW Medicine has only been tracking all Inpatient and Outpatient encounters in the same system since 2021, so navigating the historical dynamics of this mixed dataset can sometimes be challenging. Research IT knows the ropes.
Some types of data are more challenging to retrieve than others and require special planning and so we recommend you engage as early as possible with an RIT Analyst in your study lifecycle on coordinating your needs in order to meet any expected deadlines. For certain medical imaging or raw bedside device data, and Research IT can work to make that data that available for your research if we haven’t already made it generally available for research access prior.
If you are IRB-approved and ready to start digging into some data we can start a consulting engagement and have an experienced EHR data analyst help define your data ask in UW Medicine data warehouse terms to efficiently retrieve it and safely store it long term for analysis. Research IT is a designated “Honest Broker” for UW Medicine and is authorized to release PHI to IRB-approved researchers.
Beyond the EHR
Often the EHR is just a starting point for the data being collected and may be just one of many data sources. Research IT is sensitive to this and is working to expand the possibilities for easily linking this data to additional relevant datasets.
Social Determinants of Health (SDoH) is a hot topic and Research IT is on the front lines of supporting this work in partnership with OHDSI, OCHIN’s ADVANCE PCORnet Partership, and NIH’s AllOfUs CLAD Grant. Using our in-house geocoding pipelines we make easy to link a patients address history to external sources like the Environmental Justice Index (EJI) or the Area Deprivation Index (ADI).
An OMOP formatted representation of the EHR provides a standard data format for data science and Research IT can make this available as an output format for your data request.
Self-Service Cohort Discovery
Research IT supports a number of tools that provide researchers with access to EHR data for the purpose of cohort discovery on their own. In early phase of planning your research study, you might need some help defining your data needs. You may be able to answer at least some of your feasibility questions by interrogating the EHR data warehouse yourself.
For those who are already a part of the health system and in a pre-IRB stage, you can engage in exploration on your own via our homegrown self-service cohort discovery tool Leaf that provides an intuitive modern interface for searching and exploring EHR concepts on an up-to-date snapshot of what is currently in the UW Medicine Data Warehouse. Testing your assumptions in Leaf often goes a long way toward validating some the feasibility questions researchers have when crafting an IRB.
In partnership with ADVANCE we maintain a PCORnet formatted representation of a recent EHR snapshot that is explorable via OCHIN’s i2b2 instance.
Recruiting Support for IRB Approved Research
Often a given study design will depend on identifying possible participants via the EHR. The time period being queried will determine our possibilities, and Research IT can support a number of different modes of patient identification for inclusion in a study depending on the context:
- One-Time Query
- Ongoing, periodic queries for new patients are typically automated with results landing in a REDCap Project.
- Epic Reporting Workbench Report – An in-Epic way of presenting a cohort
- Epic Real-Time Notifications – Deliver notifications to Epic InBasket when time-sensitive triggering based on an in-Epic event is required (eg. a medication ordered or an appointment scheduled)
Research IT is your honest broker to access UW Clinical Data for your research.
Services We Offer
We offer a broad range of services for researchers needing study-specific or other special access to the UW medicine enterprise systems and data.
Pre-Research Support Services
General Orientation Meetings
Perhaps you’re not entirely sure exactly what you need for your study, or you’d just like to talk one-on-one about what we have to offer. In these cases, we can schedule a free meeting with you to discuss how we can be of assistance. IRB approval is not required for this service.
Feasibility Assessments
This is a good option if you have at least a rough idea of your study design, and need an idea of what practical things can be done to meet a research goal. This can help you define your study population and criteria depending on what data is and is not available. IRB approval is not required for this service. However, depending on the complexity of the feasibility assessment, our standard billing rates may apply.
Quotes/Estimates
With enough information about your study, we can provide you with a quote of the development hours needed to complete your request, as well as an estimated timeline of when we would be able to start. This option is best for clients who need this estimate for grant applications, etc. IRB approval is not required.
Consultation Services
Custom data extraction of UW clinical data
This is the most common service we offer. Based on your study inclusion and exclusion criteria, we will pull a custom dataset and deliver it in the format of your choice. Data extracted from UW’s data warehouse is NOT real-time but is current to within the past 24 hours-1 week. (For real time data needs, see “Custom Epic Reporting Workbench Builds” section.) However, these custom extracts are generally more flexible than an Epic report allows.
Most data extracts can be delivered into OneDrive, a REDCap project, or via any other HIPAA-compliant delivery method. File delivery can be done once or ad hoc, while REDCap data delivery can be done once, ad hoc, or scheduled on a recurring basis. For additional details on REDCap capability, see “Custom data import and export from REDCap” section.
Custom Epic Reporting Workbench builds
This option is for clients with active Epic Hyperspace accounts and existing access to the Epic Reporting Workbench. Custom reports are real-time, and SlicerDicer reports are current to within 1 month. While less flexible than a custom data extraction, these reports can be run by the user as little or often as needed, and can be placed right into your Epic dashboard for easy access.
Custom data import and export from REDCap
This option is best for clients who:
- Want a REDCap project built specifically for the study data they are requesting
- Already have an existing REDCap project to house their data
- Want to be able to easily specify pre-identified patients for whom additional clinical data is needed
By utilizing the REDCap API, we will import and export data between REDCap and the data warehouse as needed, including scheduling automatic data flow (often daily, weekly, or monthly). This option is generally considered part of a custom data extraction. For a full list of REDCap capabilities and user training options, please see the REDCap overview section.
Advanced data processing such as Natural Language Processing (NLP) and geocoding
This is an uncommon request, best for clients with existing dedicated servers for data storage. Sometimes the data already stored in discrete formats isn’t what your study needs, and you may need data extracted from clinical notes or other free-text portions of an EHR. For advanced data processing requests, please contact us as early as possible in your study design to allow us adequate time to assess the feasibility of your request.
The earlier you engage with us in your study design process, the more help we can provide.
Rates
The UW has Internal and External billing rates based on the Institution supported and their organizations status and funding source of the project.
Internal UW Rate
With UW Worktags
$150
External Rate
No UW Budget Number
$200
Industry Rate
Internal With Industry
$270
We invoice in the first week of the month for work done in the previous month. This amount will be automatically deducted from the supplied worktag. The billing contact you supply before beginning a consultation will get an invoice (from UW Central Billing) at that time, but generally doesn't have to do a thing.