Submission Form: Request for Information (RFI) on Streamlining Access to Controlled Data from NIH Data Repositories

Background

On July 9, 2021, the NIH Office of Data Science Strategy (ODSS) published a Request for Information (RFI) to solicit public input on issues that are relevant to users of NIH-supported controlled-access data repositories (NOT-OD-21-157).

Information Requested

NIH is requesting input on issues that are relevant to users of NIH-supported controlled-access data repositories (hereinafter “repositories”).  NIH notes that the scope of this RFI is intended to cover strategies generalizable to all NIH-supported controlled-access data repositories, and all data types featured therein and is not specific to particular data repositories.  This RFI is not intended to identify specific repository access challenges, but rather to help NIH understand users’ experiences and potentially workable solutions to streamlining access to controlled data.  Prior RFIs sought community input on opportunities and challenges associated with particular repositories, such as with dbGaP in 2017 (NOT-OD-17-044).   

While elements of this RFI touch on informed consent in the sense of ensuring a common understanding and vocabulary to describe how data may or may not be used, NIH has released another RFI on sample informed consent language for data and biospecimen sharing (NOT-OD-21-131). Respondents interested in consent for data and biospecimen sharing may wish to review and comment in response to that RFI.

This RFI is for planning purposes only and should not be construed as a policy, solicitation for applications, or as an obligation on the part of the Government to provide support for any ideas identified in response to it. Please note that the Government will not pay for the preparation of any information submitted or for its use of that information. 

Responses may be compiled and shared publicly in an unedited version after the close of the comment period. Please do not include any proprietary, classified, confidential, or sensitive information in your response. The Government reserves the right to use any non-proprietary technical information in summaries of the state of the science, and any resultant solicitation(s). The NIH may use information gathered by this RFI to inform development of future guidance and policy directions.

We look forward to your input and hope that you will share this RFI opportunity with your colleagues.

Please direct all inquiries to

Vivian OTA WANG, Ph.D.
Office of Data Science Strategy 
National Institutes of Health
Email: streamliningdata-rfi@nih.gov

Submitting a Response

All comments must be submitted online using the form below. To ensure consideration, responses must be submitted no later than Aug. 9, 2021, at 11:59:59 p.m. EDT.

Responses to this RFI are voluntary and may be submitted anonymously. You may voluntarily include your name and contact information with your response. If you choose to provide NIH with this information, NIH will not share your name and contact information outside of NIH unless required by law.

Other than your name and contact information, please do not include any personally identifiable information or any information that you do not wish to make public. Proprietary, classified, confidential, or sensitive information should not be included in your response.

All responses are voluntary, and you may choose to respond to any or all of the topics listed below:

1. General opportunities for streamlining access to controlled data

2. Making controlled-access data readily findable and accessible

For more on how metadata is defined, see the Final NIH Policy for Data Management and Sharing (NOT-OD-21-013).

3. Addressing oversight, governance, and privacy issues in linking controlled access data from different resources