Research Remix

September 18, 2008

NCRR strategic plan: strategy to “Facilitate information sharing among biomedical researchers”

Filed under: Uncategorized — Heather Piwowar @ 10:22 am

The US NIH National Center for Research Resources (NCRR) has released its strategic plan for 2009-2013.   Available here in various formats.

Of special note to those interested in data sharing, Strategic Initiative IV, Informatics Approaches to Support Research, includes:

Strategy 1:  Facilitate information sharing among biomedical researchers

…Sharing of raw data has become commonplace in some fields, including the human genome sequence, as well as those of many other species. Other genetic and phenotype data are being collected and made available through the National Library of Medicine. Additionally, many NIH ICs, other federal agencies, and private organizations make data available for research. Many tools for data analysis also are broadly and freely available from NIH, investigators, and organizations. However, there are areas for progress in data availability and, in particular, in sharing of metadata associated with the data (i.e., data that increase the usability and quality of the data)….

Sharing of de-identified raw clinical data and clinical research data is also common, including from the Centers for Medicare and Medicaid Services, NIH studies, and foundations. Careful attention is required to assure privacy and confidentiality in sharing and use of human data for research. Differing and conflicting regulations and approaches have made sharing of clinical data more difficult…

Many challenges still exist to facilitate information sharing for biomedical research:

  • Issues related to accessing and querying text data are well advanced; however, approaches and tools for querying other types of data are much less well developed. This includes image, gene, structural, clinical, and digital data.
  • Collection of metadata associated with the data from all sources is critical for semantic and syntactic interoperability….
  • Data models, structures, and formats also are critical for the sharing of data. Lack of industry standards for machine data and lack of agreement, particularly in emerging research areas, make sharing difficult. There are ongoing efforts in many communities related to these issues.
  • Clear and common agreements on policy and technology requirements for sharing of human data would facilitate sharing of these data.
  • Access to tools for management and analysis of the data is necessary. Many tools and computer cycles can be made widely available using a grid-based computational structure.

Action Items: NCRR will:

  • Work to implement policies that encourage or require investigators to share data collected with NIH support and to describe their data-sharing plans in detail in their applications.
  • Work with academic institutions, patient advocacy groups, NIH ICs, and other agencies to develop procedures that facilitate the sharing of human data for research by its centers and programs while protecting confidentiality and privacy.
  • Continue to support and modernize the BIRN and RTRN data-sharing infrastructure and attempt to facilitate the use of that infrastructure in a variety of research communities.
  • Continue to support COBRE and INBRE bioinformatics core facilities, computational resources, and network connectivity upgrades at IDeA-eligible institutions.
  • Explore ways to work with NSF, DOE, other agencies, and industry to develop tools to analyze large amounts of data and to develop tools to query heterogeneous datasets.

Strategy 5:  Develop an online resource knowledge community for biomedical researchers

To establish effective collaborations and partnerships and use the most effective tools, researchers must have access to and knowledge of state-of-the-art resources, technologies, and people in relevant areas. Many online resource and collaboration networks are arising, driven by this need. However, information about many NIH-supported resources is fragmented and difficult to locate, even via Internet searches. NCRR provides many resources in its multiple programs that could be further utilized.

Action Item: NCRR will pursue the development of a Web-based knowledge community of NCRR resources that encourages access by all biomedical researchers. NCRR will explore tools that allow users to interactively query the resources and community, analyze spatial information, and explore relationships.

Great to see these issues highlighted.  I do think it would be valuable to have additional grant opportunities to evaluate data sharing progress, measure cost/benefits, and focus on reuse.  That said, I bet everybody thinks it would be valuable to have more grant opportunities in their research niche ;)

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