Request for Information (RFI) on Enhancing Timely Data Sharing from NIA-Funded Studies

Notice Number: NOT-AG-17-001

Key Dates
Release Date:   February 1, 2017

Related Announcements
None

Issued by
National Institute on Aging (NIA)

Purpose

The National Institute on Aging (NIA) is seeking comments and suggestions on ways to enhance the timely sharing of high-quality data generated by NIA-funded studies.  Through this Request for Information (RFI), NIA seeks additional perspectives on what, if any, unique considerations exist for sharing of data from NIA-funded research on aging.  Furthermore, NIA invites comments on what the extramural research community and other stakeholders believe are the primary characteristics of successful data-sharing resources and strategies (currently in use).  Finally, NIA invites responses focusing on what stakeholders believe are the barriers to broad sharing of data and what additional resources and tools stakeholders believe would promote more timely and efficient sharing of data from NIA-funded research on aging.  NIA will use information from responses to this RFI to inform NIA policy development.

Background

In 2003, NIH published its landmark policy statement and guidance on data-sharing: "Final NIH Statement on Sharing Research Data," https://grants.nih.gov/grants/guide/notice-files/NOT-OD-03-032.html.  NIH's data-sharing policy is integral to NIH's mission and figures prominently in the NIH's application-submission, peer-review, and funding-decision pipeline.

In NIH's view, all data should be considered for data sharing.  Consequently, NIH advocates that all data from NIH-funded research should be made as freely and widely available as long as doing so safeguards the privacy of participants as well as the confidentiality and proprietary nature of the data.

Information Requested

NIA is interested in facilitating data sharing from the awards that we support and is seeking information on:

  • The obstacles to sharing data experienced by investigators who collect data.  Examples might include a continuing study where future results will alter the impact of earlier collected data, as well as obstacles in terms of lack of resources needed to prepare data for sharing, and concerns over loss of confidentiality protection that sharing the data could expose.
  • The experience of investigators seeking to analyze data collected in NIA grants, including accounts of successful data-sharing and how data-sharing was accomplished, any policies or practices that restricted data-sharing, and the justification for imposing such restrictions.
  •  
  • The experience of successful data sharing.  We would like to hear from investigators who were provided assistance from the data-provider or from an archive that facilitated the secondary user’s project and from investigators who found cooperation without an implied or explicit commitment to collaborate with the data producers.
  • Data security: We would like to hear both from providers of data, and from secondary users of data on the value and necessity of security measures that limit access to the data, and the value and use of qualifying screens for access to the data.

How to Submit a Response

Responses will be accepted until April 15, 2017. All responses must be submitted via this email address: niaplanning@nia.nih.gov.

Responses to this RFI are voluntary.  Do not include any proprietary, classified, confidential, trade secret, or sensitive information in your response.  The responses will be reviewed by NIH staff, and individual feedback will not be provided to any responder.  The Government will use the information submitted in response to this RFI at its discretion. The Government reserves the right to use any submitted information on public NIH websites, in reports, in summaries of the state of the science, in any possible resultant solicitation(s), grant(s), or cooperative agreement(s), or in the development of future funding opportunity announcements.

This RFI is for information and planning purposes only and shall not be construed as a solicitation, grant, or cooperative agreement, or as an obligation on the part of the Federal Government, the NIH, or individual NIH Institutes and Centers to provide support for any ideas identified in response to it. The Government will not pay for the preparation of any information submitted or for the Government’s use of such information.  No basis for claims against the U.S. Government shall arise as a result of a response to this request for information or from the Government’s use of such information.

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

Inquiries

Please direct all inquiries to:

Samir Sauma, Ph.D., M.P.H.
National Institute on Aging (NIA)
Telephone: 301-496-3121
Email: niaplanning@nia.nih.gov