How to request a data set
Faculty members with access to HERON may request a de-identified or identified data set that can be downloaded into programs such as Excel, SPSS, or SAS. HeronDataSet explains the structure and format of the data set. Requests to access data can be granted after the user submits a description of the project and the names of study team members. Identified data requests require prior IRB approval from HSC, while de-identified requests do not require HSC approval.
Note: Contact information from potential research participants in the Frontiers and Pioneers Participant Registry can be requested. More information can be found here.
Steps to obtain a data set:
- Start the i2b2 Query & Analysis Tool. Conduct desired query. For general help on how to conduct a search, click on the "Help" link located in teh upper right portion of the i2b2 Query & Analysis Tool.
- Enter a search name of your choice, and make sure to check the "patient list" checkbox. Always give an appropriate name for future reference to the query and store it in your folder (it has your name) in the Workplace area.
- After search results are returned, move the search from the Previous Queries area to your folder (it has your name) located under the "Shared Folder" in the Workplace area.
- Once saved, if you think that is the query that you want to use as a result, move the query into the shared folder in the Workplace area by dragging and dropping the search into the shared folder.
- Visit https://heron.kumc.edu using any web browser. Note: If you are outside the KUMC network, you will need to use a KUMC VPN connection.
- Login with your regular KUMC login/password, just as you would to access my.kumc.edu.
- Select the "HERON Data Usage" link to access and complete the following form.
- For Identified data request - HSC/IRB number and an attached IRB Protocol are required.
- List all individuals who need access to the data on the request.
- Submit upon completion of the form. The system will notify the Data Request Oversight Committee (DROC) by email that a data request is pending approval. Within a week, you should receive notice of approval (or otherwise) by email. The i2b2 team will provide you with access to the requested data set.
Contact the Clinical Informatics Coordinator via the feedback form or call x8-7688.