Data access and informatics consulting
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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 data can be used to support your research including feasibility assessments, recruitment of participants, pilot studies, and retrospective analyses. Data is simple to request, free to researchers at the University of Minnesota and Fairview, and provided through the Informatics Consulting Service (ICS).
Investigators can request data from electronic health records (EHRs) as well as Minnesota death certificate records.
- Electronic health records: Provide data about patients (e.g., demographics, medical histories) as well as their hospital and clinic visits (e.g., diagnoses, procedures, medications, lab tests, location of the visit, specialty of the provider). The data comes from our clinical data repository, which houses the EHRs of more than 2 million patients seen at 8 hospitals and more than 40 clinics.
- Minnesota death certificate records: Includes data from an individual’s death record, such as their name, gender, birth date, and date of death, as well as data about the circumstances of their death, such as the cause, site, and any external causes revealed by an autopsy. Our death records database houses complete records issued from 2011 to present (for deaths as recent as two months ago) for deceased individuals who were born in Minnesota, have died in Minnesota, or have ever had a permanent address in the state.
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.
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" section below 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.
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.
Data is provided at no charge to employees, staff and students of the clinical partners participating in the University of Minnesota Academic Health Center Information Exchange (AHC IE), namely: U of M, University of Minnesota Physicians, and Fairview Health Services employees.
Each partner manages its own process for authorizing its users, but the requirements generally include that you are an employee in good standing, have completed HIPPA training, and have signed an attestation form in which you agree to terms for use of the data (e.g. you will only use the data for the purposes specified in the original request form). If you are affiliated with more than one of the partners, your authorization will be via the affiliation most relevant to your data request. It is not your responsibility to ensure your authorization before submitting a request; we will verify your authorization once your request has been submitted.
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.
More information for students and employees of the U of M
Addressing these requirements as soon as possible will allow us to deliver data to you more quickly.
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.
You must provide attestation to indicate that you comply with the terms of AHC Information Exchange (IE) data use. To attest, complete this short online form, which will require that you sign in with your university ID (x500). Your attestation will be valid for two years.
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.
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:
- Epi Info
- JMP Pro
- Microsoft Excel
- Microsoft Access
- MS SQL Server
- SQL Developer
- R, R Studio
If the tool you need is absent, contact the Informatics Consulting Service at email@example.com 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 the Firefox browser. 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 firstname.lastname@example.org.
If you would like to send recruitment letters to the patients you have identified, the Informatics Consulting Service will work with you and the office of Fairview Research Administration (FRA) to coordinate such a mailing.
- When you submit your data request to the ICS, let us know that you plan to send out recruitment letters via Fairview Research Administration.
- Fairview will send out recruitment letters on your behalf provided that your study will occur at Fairview or the University of Minnesota and that you have UMN IRB approval for your study. For more information on the Fairview Research Recruitment Mailing process, please see the following guidelines.
- Contact FRA at email@example.com as early as possible to alert them to your plans for a recruitment mailing.
- If recruitment letters are not appropriate for your study populations or do not suit the recruitment plan you have designed, you may want to work with CTSI's Recruitment Center to discuss alternate options for using clinical data to facilitate recruitment (firstname.lastname@example.org).
- For more information on this process, please see this guidance document.
In addition to providing data, experts from the Informatics Consulting Service can also help you work with that data. Contact us at email@example.com if you want to:
- Get help managing the data you received through our data request process.
- Get support for the informatics aspects of your grant applications.
- Learn about informatics experts beyond CTSI.
Consultations are usually available at no charge to researchers at the University of Minnesota, Fairview, and University of Minnesota Physicians.
Learn more about how you can use data for your research, and get help with your request by attending ICS (Informatics Consulting Service) Office Hours Tuesdays from 2:30-3:30pm, Wednesdays from 9-10am, or Thursdays from 11am-12pm in 330 Diehl Hall (ask for ICS when you arrive). Reserve your spot.
For more information, contact the Informatics Consulting Service coordinator at firstname.lastname@example.org.