While most of the datasets in the DISC catalog are public-use data, DISC also offers services to our users in the College of Letters & Science 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 contact person for restricted data inquiries is Charlie Fiss(firstname.lastname@example.org, 265-9240).
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.
- Contact DISC Senior Information Manager Charlie Fiss (email@example.com, 265-9240). He can help navigate the steps listed below.
- 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.
- 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).
- 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.
- 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.
- To learn how to get started with IRB process, check out this article.
- The Human Research Protection Program site provides resources on of human subjects research, and a de-identified publicly available datasets guidance.
- Learn about ARROW (Application Review for Research Oversight at Wisconsin), an online application submission system used at UW-Madison for Education and Social/Behavioral Science IRB (ED/SBS IRB) applications. Visit http://arrow.wisc.edu/ to start your IRB application.
- Most data producers require that the applicant get approval from the IRB for their data protection plan, described in point 4 (above).