Meeting Your Data Research Needs
Whether you are ready to request specific clinical data or just want to find out what’s feasible for your study, we can help.
Consultations
An iterative approach to getting the data you need.
Pre-Research Support
If you are in an early phase of your research study, you might need some help defining your data needs. We can meet with you to just discuss possibilities or provide more concrete estimates or explanations of what is and isn’t feasible.
How Our Consults Work
Once you have provided us with all relevant documentation, billing information, and agreed to a quote and a statement of work, your project will be assigned to one of our consultants. This person will then be your primary contact person moving forward. When you are assigned a consultant, you will also be provided with a project start date. We assign our work in two-week increments, or “sprints,” and during these sprints your consultant will dedicate time to finish your project.
At the beginning of each two-week sprint, a consultant will want to have a kickoff meeting with you and your study team. During the sprint, the goal is to communicate frequently and quickly in order to resolve any issues or questions. We highly recommend that your study team assigns a contact person that will be available during this two-week period.
The ultimate goal is to have an acceptable deliverable by the end of the sprint.
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 and staff 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 from 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.
Advice on how to use clinical data in your research study
Perhaps you know generally what you want to assess, but you aren’t quite sure exactly what kind of data to ask for. We can provide advice on structuring your request, discuss formatting needs, and assess availability of data.
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.
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 budget number. 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.
The earlier you are in your study design process, the more help we can provide.
F.A.Q.
Common questions about our consultations.
Q: What if my request is going to take more than two weeks?
A: If a request is so large that we expect it to take more than one sprint, we will assign it to consecutive sprints.
Q: My team can’t review data within 2 weeks. How does that work?
A: The goal is for the consultant to get you a deliverable within two weeks. Your team can take as long as they need to review the data afterwards. Any follow up questions will be answered in the “catch up weeks” between sprints. If more work is needed, we’ll assign that work to the next available sprint for that consultant.
Q: What if the consultant can’t complete all the work due to external circumstances?
A: At the end of each sprint, the consultant will supply you with a list with all the current outstanding items and their blockers. Once those blockers are resolved, the remainder of the work will be assigned to the next available sprint or be completed in a “catch up week”.
Q: I have a question about one of my previous requests. Can I schedule a meeting or email my consultant?
A: Yes, however, our consultants prioritize the work assigned during specific sprints, so your email may not be answered until their next “catch up week.” If your question for a specific consultant cannot wait, please email our general email ritdatahelp@uw.edu and another consultant will address your question for you as soon as possible.
What to Expect:
We will set up a discovery call with you to get to know your project needs. From there we will create a quote (if we have not already done so as a pre-research service) and a proposal for you to approve that shows a detailed description of the work we are to provide. We will also thoroughly review all IRBs, DUAs, and other supporting documents before beginning work.
Things you should identify to help speed the process up:
- When do you need the project to be completed?
We require at least 3 weeks of lead time to properly plan out a project before work begins. Please contact us as soon as you know you will need support.
- Who are the study contacts?
This may be the PI, the study research coordinator(s), a coordinating researcher, etc.
- Do you have IRB approval?
If yes, please be ready to upload your IRB application and current approval letter. If no, that is ok, but depending on the project we may require IRB approval before we can provide you with any data.
- What is the study’s inclusion criteria, exclusion criteria, and timeframe to search?
The more detailed information you can give us up front, the better an estimate of development time needed we will be able to give you.
- What data elements would you like returned?
For identified datasets, most people want things such as MRN, patient name, address, date of birth, and age at encounter in addition to any other clinical data of interest. For example, many PIs want data on specific labs, medications, procedures, or diagnoses. For de-identified datasets, we can remove PHI and assign generic ID numbers to person and encounter records as needed.
- Do you have a set of UW Worktags for billing?
If yes, please be ready to provide your worktags and contact info for the person handling billing for your team in case of any billing questions.