Notice Number: NOT-OD-12-032
Key Dates
Release Date: January 10, 2012
Response Date: March 12, 2012
Issued by
National Institutes of Health (NIH)
Purpose
This Notice is a time-sensitive Request for Information (RFI) soliciting input into the deliberations of the Advisory Committee to the NIH Director Working Group on Data and Informatics.
Background
The Advisory Committee to the NIH Director (ACD) has established a working group to investigate the management, integration, and analysis of large biomedical datasets (see http://acd.od.nih.gov/DIWG.htm for charter and roster). The group will gather information from various sources, including internal and external data and informatics experts, and develop recommendations to present to the ACD and the NIH Director on policies regarding the management, integration, and analysis of research data and administrative data.
In its initial deliberations, the working group identified the following issues as important to consider when developing recommendations:
- Scope of the challenges/issues
- Research information lifecycle
- Challenges/issues faced by the extramural community
- Tractability with current technology
- Unrealized research benefits
- Feasibility of concrete recommendations for NIH action
- Standards development
- Data standards, reference sets, and algorithms to reduce the storage of redundant data
- Data sharing standards according to data type (e.g., phenotypic, molecular profiling, imaging, raw versus derived, etc.)
- Secondary/future use of data
- Ways to improve efficiency of data access requests (e.g., guidelines for Institutional Review Boards)
- Legal and ethical considerations
- Comprehensive patient consent procedures
- Data accessibility
- Central repository of research data appendices linked to PubMed publications and RePORTER project record
- Models and technical solutions for distributed querying
- Comprehensive investigator authentication procedures
- Incentives for data sharing
- Standards and practices for acknowledging the use of data in publications
- Academic royalties for data sharing (e.g., special consideration during grant review)
- Support needs
- Analytical and computational workforce growth
- Funding for tool development, maintenance and support, and algorithm development
Information Requested
To ensure a thorough and comprehensive evaluation of the issues surrounding the management, integration, and analysis of research data and administrative data, input is sought from data and informatics experts and stakeholders, including investigators, administrators, and IT professionals, as well as from the general public. Input is sought on the areas described above, as well as any other items that the working group might consider.
- For any of the areas identified above and any other specific areas you believe are worthy of consideration by NIH, please identify the critical issues(s) and impact(s) on the scientists, institutions, or both.
- Please identify and explain which of the issues you identified are, in your opinion, the most important for NIH to address and why.
- Please comment any specific ways you feel these or other issues would or should affect NIH policies or processes.
Response to this RFI is voluntary. Responders are free to address any or all of the above items. Please note that the Government will not pay for response preparation or for the use of any information contained in the response. All responses will be available, including name of the responder. In addition, NIH will prepare and make available a summary of all input received which is responsive to this RFI.
How to Submit a Response
All comments must be submitted electronically to: https://grants.nih.gov/grants/guide/rfi_files/nih_di/add.cfm
Inquiries
Specific questions about this RFI should be directed to the following e-mail address: [email protected]
and Human Services (HHS)
