Request for Information (RFI): Input on Sustaining Biomedical Data Repositories

Notice Number: NOT-ES-15-011

Key Dates
Release Date:     February 18, 2015
Response Date:  March 18, 2015

Related Announcements
None

Issued by
National Institute of Environmental Health Sciences (NIEHS)
National Cancer Institute (NCI)
National Human Genome Research Institute (NHGRI)
National Institute of Allergy and Infectious Diseases (NIAID)
National Institute on Drug Abuse (NIDA)
National Institute of General Medical Sciences (NIGMS)
Office of Strategic Coordination (Common Fund)

Purpose

This Request for Information (RFI) is to solicit comments and ideas for economic, technical, policy and administrative approaches toward enhancing long-term sustainability of biomedical data repositories.

Background

The ability to harvest the wealth of information contained in biomedical “Big Data” has the potential to advance our understanding of human health and disease; however, the enormity of Big Data creates major organizational and analytical impediments to accelerating the pace of scientific discovery. As biomedical datasets become increasingly large, diverse, and complex, they tax conventional methods for sharing, managing, and analyzing data. Furthermore, researchers’ abilities to capitalize on biomedical Big Data science-based approaches are limited by poor data accessibility and interoperability, the lack of appropriate tools, and insufficient training.

In response to the opportunities and challenges presented by the dawning era of Big Data in biomedical research, the NIH launched the Big Data to Knowledge (BD2K) initiative as a trans-NIH initiative to cultivate the digital research enterprise within biomedicine, to facilitate discovery and support new knowledge, and to maximize community engagement.

Biomedical research is an increasingly data intensive enterprise due in part to the rapid advance of many life science technologies. This data enterprise has created a multitude of repositories, which are growing in both scale and complexity, for the preservation and distribution of data across the scientific community. A challenge for the scientific community is to develop effective means of sustaining biomedical data repositories and knowledge therein.   With growing datasets and flat research budgets around the world, the challenge of sustaining repositories is straining the capacity of current funding approaches to fulfill the need.  It is essential to develop new, innovative business models.  In addition, the NIH is considering how repositories can be integrated within the larger biomedical digital research enterprise so as to accelerate our capability to find, access, reuse, and interoperate information across diverse data types.  To address these challenges, BD2K seeks information about approaches, business models, and ideas that will inform the NIH in improving the value of current mechanisms and developing new mechanisms to sustain biomedical data repositories on a long-term basis; and developing strategies, technologies and business models to accommodate rapidly evolving, interdisciplinary research needs requiring access to multiple data types in a variety of resources.

Information Requested

All stakeholders with an interest in strategies to address the sustainability of biomedical data repositories are invited to provide information. If you choose, you can categorize your area of expertise by including all that apply:

  • Biomedical science researcher
  • Bioinformatician
  • Data scientist
  • Standard developer or maintainer
  • Research data repository manager
  • Library or information scientist
  • Data curator
  • Professional society officer
  • Funder
  • Publisher
  • Administrator (president, provost, dean or equivalents in academic or non-profit organizations)
  • Non-profit employee
  • Tool or services vendor
  • Biotech company employee
  • Business developer
  • Economist or other financial expert
  • Other

Your response may also include your detailed roles within industry, government, or academia and the history and experiences of relevant repositories.

The NIH is seeking information that addresses, but is not limited to, the following areas:

  • Innovation – Sustaining data repositories while enabling new innovations in finding, accessing, integrating and reusing their contents by a wide variety of stakeholders.
  • Evaluation  - Criteria to determine which data repositories require sustained funding models or no longer need to be sustained, including, but not limited to metrics for measuring the value of given repositories and data within those repositories.
  • Best Practices - Current, new, and emerging means or practices to sustain data repositories for the long-term.
  • Partnerships -  The type, form, and governance of partnerships to ensure long-term access to essential data repositories including, but not limited to, private-sector organizations, non-profit foundations, universities, national and international government agencies, and combinations thereof.
  • Technical – Technological developments needed to sustain data repositories in a more cost-effective way while furthering accessibility and usability to a broad set of stakeholders.
  • Human Capital – Models to enhance efficiency in the application of human capital associated with data repositories.
  • Life Cycle – Consideration of the evolution of value, cost, and scale as data repositories emerge, reach maturity, and either gain or lose relevance in the long term.

Submitting a Response

All responses must be submitted to BD2K_Sustainability_RFI@niehs.nih.gov by March 18, 2015. Please include the Notice number NOT-ES-15-011 in the subject line. Responders are free to address any or all of the categories listed above. The submitted information will be reviewed by NIH staff.

Responses to this RFI are voluntary. Please do not include any proprietary, classified, confidential, or sensitive information in your response. NIH will use information submitted in response to this RFI at its discretion and will not provide comments to any responder's submission. The collected information will be reviewed by NIH staff, may appear in reports, and may be shared publicly on an NIH website.

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 funding opportunity announcements.

This RFI is for information and planning purposes only and should not be construed as a solicitation or as an obligation on the part of the Federal Government, the National Institutes of Health (NIH), or individual NIH Institutes and Centers. NIH does not intend to make any awards based on responses to this RFI or to otherwise pay for 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.

Inquiries

Please direct all inquiries to:

Allen Dearry, Ph.D.
National Institute of Environmental Health Sciences (NIEHS)
Telephone:  919-541-3068
Email: dearry@niehs.nih.gov