Restricted Data at DISC

While most of the datasets in the DISC catalog are public-use data, DISC is also committed to helping our users whose research requires restricted data. DISC provides assistance with gaining access to restricted data, and also provides facilities for secure data storage and analysis (the “cold rooms”).

The e-mail contact for restricted data inquiries is discrda@ssc.wisc.edu; the primary phone contact is Data Analyst/Archivist Janet Eisenhauer Smith (265-3937), along with DISC director Jack Solock (262-9827).

Restricted data is data that cannot be released directly to the public due to risks to study participants and the confidentiality promised to them. However, the aspects of the data that must be removed or altered for public-release are often of interest to researchers. Commonly-restricted data elements include:

• Detailed geography
• DNA or other personally-identifiable medical data
• Administrative data from federal agencies such as the Social Security Administration or Medicare.

Files containing such confidential information are available to researchers only under certain conditions and agreements.

The process of applying to use restricted data generally includes the following elements.

1. Contact DISC Data Analyst/Archivist Janet Eisenhauer Smith (discrda@ssc.wisc.edu, 265-3937). Her experience with restricted data applications and contracts can help users with the fine points of the steps listed below, which can save weeks or even months in the process.
   
2. Justify the research. Researchers must consider carefully whether restricted data is even necessary for their research. To move forward in the application process, those who wish to use restricted data must be able to explain in detail why public-use data is insufficient for their inquiries.
   
3. Institutional Review Board (IRB). Research using restricted data at UW-Madison must go through human subjects review by one of UW-Madison's institutional review boards, even though the researcher is not the one collecting the data initially.
   
   • The UW-Madison Human Research Protection Program provides Policies and Guidelines for student research involving human participants.
   • The Human Research Protection Program also provides Definitions and Examples of Human Subjects Research, and a specific Existing Datasets Policy.
   • Human Subjects Training (PDF, 603K) is a required initial step in the IRB approval process.
   • The UW-Madison Graduate School offers additional links and information in Obtaining IRB Approval for Human Subjects Research.
   • Most data producers require that the applicant get approval from the IRB for their data protection plan, described in point 4 (below).
     
4. Data license application. Every provider of restricted data has their own application materials and process for licensing researchers to use the data. Some important elements of the application to the data provider include:
   
   • An explanation of why restricted data is necessary for the research
   • A data protection plan, comprising the steps that will be taken to prevent unauthorized use of licensed data. DISC's “cold room” secure data enclaves are often an integral part of the data protection plan. The data protection plan must also be approved by the IRB.
     
5. Contract approval of the data license. Any contract entered into on behalf of the UW-Madison, such as a data licensing agreement, must be approved by UW-Madison's contracting authority, Research and Sponsored Programs (RSP).