Need help?

Contact our Research Navigator for help locating resources, initiating a new study, or finding your way through the research process.

Contact Melissa Hansen, MLS, directly at 612-626-2318 or ctsi@umn.edu.

 

 

Access Clinical Data for Your Research

Researchers have unprecedented access to patient data, thanks to a clinical data repository that houses the electronic medical records of more than 2 million patients. This information can be used for health-related research, including grant applications, studies, participant recruitment, and more.

Requesting data is simple, and free to researchers at the University of Minnesota and Fairview. Click here to request clinical data for your research.

Clinical Data Repository-6

What Clinical Data Is Available?
The data in the University of Minnesota's Clinical Data Repository comes from the electronic health records (EHRs) of more than 2 million patients seen at 8 hospitals and more than 40 clinics. Data is available for hospital visits starting in 2011; for Fairview Health Services clinic visits from 2005; and for University of Minnesota Physicians clinic visits starting from 2011. All start dates are approximate and depend on the date for the adoption of Epic® at each particular site.

For each patient, data is available regarding the patient's demographics, medical history, allergies, immunizations, outpatient vitals, and more. The patient's hospital and clinic visits (also known as "encounters") include information on diagnoses, procedures, medications, lab tests, location of the visit, specialty of the provider, and more. See the schematic above, or view the Clinical Data info sheet for more details.   

How Do You Request Clinical Data?

Step 1: Prepare your Data Request
The more preparation you do, the better we can help you with your data request.

Before requesting data:

  • Create a detailed description of the patients who are relevant to your research question, including dates of service, demographics, diagnoses, procedures, treatments, and lab tests
  • Determine the exact ICD9 and CPT codes for your query, whenever possible

Step 2: Complete the Data Request Form
When filling out the data request form, answer the fields as completely as possible.

Note that you can save the information you have entered and return to it later. You will be given a return code upon leaving the page. When you're ready to complete your request, visit the form and click on "Returning?" in the upper right corner of the page.

What Should You Expect After You've Submitted Your Request?
Clinical data requests can take anywhere from a couple weeks to more than five months to fulfill, depending on the complexity of the request. We'll work closely with you as we take the following steps to process your request:

Step 1: Initial Review
We start by evaluating requests to make sure your request is clear, complete, and feasible for us to fulfill. We'll also verify that the primary requester or the PI is an authorized AHC Information Exchange (IE) user (see "Who Can Request Clinical Data" for more information).

Step 2: Partner Review
Next, your request must be approved by our clinical partner's data steward. They will make sure the request complies with their organization's regulatory, ethical, and business guidelines. We'll notify you when your request has been approved or denied, and send you a final version of your completed data request form.

Step 3: Fulfillment
At this point, we will begin fulfilling your data request. Once you and your colleagues are verified as authorized users, IRB approval is confirmed, and the data is ready, we will email you with instructions for accessing your data.

How Will You Access and Analyze Your Data?
Once your data request has been fulfilled, you'll be able to view and analyze your datasets through a secure desktop environment called the "Data Shelter". Instructions for logging into the Data Shelter can be found here.

This work environment protects private patient data, provides data backup, includes free, powerful analysis tools, and enables collaboration with colleagues.

Analyzing Data
Any analysis you perform on your secure datasets must be done using the software provided in the shelter. The following software is available for use, free of charge, within the Data Shelter:

  • Microsoft Office 2010
  • STATA 13
  • SAS 9.3
  • JMP Pro 10
  • R 3.0.1
  • SPSS 22
  • Epi Info 7

If the tool you need is absent, contact the Informatics Consulting Service at ics@umn.edu and we will do our best to accommodate your need.

Accessing Epic Within the Shelter
For security purposes, web traffic is disabled within the Data Shelter. However, there are approved sites that you can access with either Internet Explorer or Mozilla Firefox browsers. For example, you can access the Fairview Secure Gateway, which will allow you to access Epic and other Fairview systems from within the shelter. If you have a site you would like added, please contact us at ics@umn.edu.

Do You Need IRB Approval?
IRB review and approval is required for research falling under the federal definition of human subjects research. IRB approval is required for data requests that involve direct review or analysis of the medical record data, or differ from your existing IRB-approved research. Visit the U of M's IRB website for more guidance (e.g., Does My Research Need IRB Review?) and up-to-date forms, including the Change in Protocol form and Change in Personnel forms.

Data requests to determine study feasibility inquiries or plan for participant recruitment do NOT require IRB review, as long as potential participants are not contacted. Participant recruitment itself, however, does need IRB approval.

Who Can Request Clinical Data?
Data is provided at no charge to U of M and Fairview employees who have:

  • Completed HIPAA training
  • Signed the attestation form
  • Are named on the IRB-approved protocol (if approval is needed)

External collaborators cannot request data themselves, but qualified University-affiliated individuals or departments can be granted access in some cases. To do so, a University member must secure a sponsored guest x.500 account for their external collaborator. This is a free service that can be requested via the Office of Information Technology.

HIPAA Training
The University's HIPAA Privacy and Data Security Training program consists of four separate online courses that are part of the "Public Jobs: Private Data" training program.

If you've completed the training, you do not need to re-take it. A record of all training completed while at the University is available online through the Training History link at the Employee Self-Service Web site. You can also contact the Health Information Privacy and Security Office.

Attestation Form
You must provide attestation to indicate that you comply with the terms of AHC Information Exchange (IE) data use. To attest please complete this short online form. Your attestation will be valid for two years.

Get Help

Learn more about how you can use data for your research, and get help with your request by attending Clinical Data Office Hours on Tuesdays from 2:30-3:30pm in 717 Delaware St. SE, Room 212, or Thursdays from 11am-12pm in Diehl Hall, Room 350G. Reservations are required; please reserve your spot today.

For more information, you can download the Clinical Data info sheet or contact the Informatics Consulting Service coordinator at ics@umn.edu.

© 2011 Regents of the University of Minnesota. All rights reserved.
The University of Minnesota is an equal opportunity educator and employer
Last modified on April 17, 2014