NIH Requests Information on the Need for an NIH Data Enclave
The National Institutes of Health (NIH) issued a request for information (RFI) to explore interest in whether NIH should use funds to develop, host, and maintain a secure data environment (data enclave). The data enclave would allow researchers to access de-identifiable NIH scientific information not made available to the public.
Deadline to submit comments: Thursday, May 30, 2019 at https://grants.nih.gov/grants/rfi/rfi.cfm?ID=86
Currently RePORTER provides the public with a searchable repository of NIH-funded projects, and ExPORTER provides files on funded projects for download. These tools contain non-sensitive information on NIH funded projects. In recent years, NIH has noted an increasing demand for access to sensitive information collected via the grants process.
NIH seeks input on any of the following:
- Examples of NIH mission relevant biomedical and behavioral research using a data enclave that cannot be pursued currently.
- Whether the benefits of the proposed data enclave are worth repurposing NIH research funds to establish, maintain and operate the data enclave.
- Preferences and considerations about accessing a data enclave only at a designated physical location or within a virtual environment.
- Quantity of seats desired if NIH decides to make a substantial investment to sponsor access to sensitive data as allowable under the applicable federal laws in a secure virtual or physical environment.
- Examples of procedures an organization would implement to ensure the highest level of data protections, as well as to monitor, document, and notify NIH of any unauthorized and/or inadvertent data breaches.
- Examples of outputs from approved research and how these may be shared with NIH.
See Guide Notice NOT-OD-19-085 for more information.