If your data needs are too complex for our self-serve tools, we can pull a custom data set for you – to be delivered once, or on a scheduled, ongoing basis.
Custom Data Request FAQ
How do I request a cost estimate?
Every Custom Data Request goes through a cost estimate review. You can submit a Custom Data Request and include both the cohort definition and data elements of interest. You will receive an automated message with the cost estimate for you to approve. Data extraction and invoicing will only happen if you approve the estimate.
How do I request an in-person consultation?
You can request an in-person consultation via the Data Office Customer Portal or by giving us a call at (734) 615-2100. Consultations are free of charge.
What are the differences between data types?
- Full PHI Data: all patient identifiers including MRN, names, full addresses and full dates.
- Limited PHI Data: includes full dates, no full addresses (except for city, state or zip code), no patient identifiers
- De-Identified Data: no patient identifiers, and only year
How do I check the progress on my Clinical Data Request?
Once you have submitted your Data Request with all the required documentation, you can follow its progress by returning to the Data Request Summary Page, and viewing the status of the request.
These are the statuses you may see, along with their description:
You may also see a note displayed in the Request Summary pane. These notes may inform you of action you need to take to ensure your request is processed in the shortest time possible.
If recharge costs apply to your request, you will receive an estimate of charges via email shortly after you submit the request. Data extraction will not begin until any estimate has been approved by you. Recharge costs will not exceed the approved estimate, even if actual hours of effort exceed those in the estimate (assuming no major changes to the request were made after the estimate was approved).
How do I download my Clinical Data Set?
We are able accommodate a few different secure delivery methods, and our team will, in collaboration with HITS, work with you during the initial discussion on the delivery method that meets your needs, whether it’s via MiShare, or directly to your Turbo directory or Dropbox. For large and/or recurring datasets, we are also able to set up a secure automated transfer, or deliver it as a relational database.
If data is delivered to you using MiShare, please keep in mind that MiShare will only hold your data for five (5) days before it is automatically deleted, so it's important that you download your data as soon as possible after you receive notification your data is ready. More information about MiShare can be found here.
If you are requesting only a document review (e.g., Data Sharing Agreement), or have requested aggregate counts, those communications will most often be done via email.
It is important to note:
- Once you have been notified that your data set is ready, the Data Office will allow up to two weeks for you to approve and accept the data as delivered.
- If there are minor changes required to the data to meet your needs, please communicate those changes before the two weeks have expired. If the Data office doesn't hear from you in that time, we will assume that the data is acceptable to you.
- Major changes to the data set may require a new recharge estimate for your request.
- Please be aware that you are expected to observe the U-M Institutional Data Resource Management Policy in regards to managing your data set once you have received it.