The Biomedical Informatics Research Network (BIRN) is a national initiative to assist biomedical research through data sharing and online collaboration. BIRN provides data-sharing infrastructure, software tools and techniques, and advisory services from a single source. The effort is funded by the National Center for Research Resources (NCRR), a component of the United States National Institutes of Health (NIH).
BIRN is designed to serve the biomedical research community’s data-intensive sharing and analysis needs, which are particularly evident in fields such as biomedical imaging and genetics. All data transfer is designed to be consistent with Health Insurance Portability and Accountability Act of 1996 (HIPAA) privacy and security guidelines
BIRN's user-driven, software-based framework enables research teams to share significant quantities of data across geographic distance or incompatible computing systems. Participants may transfer data securely and privately. Groups may choose whether to share data with internal or external audiences.
BIRN also offers documented best practices, expert advice, and data-sharing, query and analysis software tools specific to biomedical research. Its researchers develop new data-sharing tools, authorization capability, and engineering tools to help biomedical researchers make sense of information in new ways.
BIRN is a collaborative effort between the NCRR and a nationwide leadership consortium: the Information Sciences Institute (ISI) at the University of Southern California, the University of Chicago, Massachusetts General Hospital, the University of California at Irvine, and the University of California at Los Angeles.
Its interdisciplinary team consists of computer scientists, engineers, physicians, biomedical researchers and other technical experts, including grid computing developers Carl Kesselman of USC ISI, and Ian Foster of Argonne National Laboratories. Co-Principal Investigators are:
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Users range from small research groups to large, national consortia such as the Nonhuman Primate Research Consortium (NHPRC) and the Cardiovascular Research Grid (CVRG), both funded by NIH.
By using BIRN's capabilities both to access data and perform research, groups can can conduct large-scale data analysis while maximizing their existing technical infrastructure and expertise. Users also can participate in BIRN Working Groups, which develop and support operations, data-sharing requirements, security and other key functions.
BIRN offers a website, wiki and mailing lists to help users stay current on news, best practices and topics related directly to their data-sharing considerations. Its experts can help biomedical teams select software, data and metadata community standards; set up security mechanisms and sharing protocols; and create multi-institutional policies from a potentially overwhelming range of options.
BIRN began as an NCRR initiative built around several "testbeds," or select projects, in neurology research. In 2008, its mandate expanded significantly to include data-sharing support across the biomedical research community. The network is now open to all biomedical research groups that BIRN believes will benefit from its services, regardless of a group's specialty, mandate, size or U.S. location.
BIRN's mission also has shifted from a repository of users' data to a means of supporting efficient data transfer. As a result, BIRN no longer provides hardware, offers or maintain servers (previously called “racks”) for storing user information, or uses participants’ computers as network nodes.
The user-driven, software-based approach instead supports data sharing on participants’ existing hardware and software. Each user group retains control over, and responsibility for, its own hardware -- and for the security and privacy of its own information. Data is stored on users' systems rather than in a central repository, making possible storage of, and access to, vastly greater data quantities than was possible with BIRN “racks” alone.
BIRN seeks to aid university- and institute-based researchers with complex, distributed projects -- either technologically or geographically -- such as multi-site clinical trials. Working Groups (WGs) evaluate candidate projects based on their unique characteristics and use cases. There are no specific project criteria or required sizes, although WGs may consider factors such as research goals, potential impact, technical challenges, host institution and sponsor funding.
Among the characteristics of groups likely to get the most out of BIRN: the need to exchange data between multiple sites on an ongoing basis, not just from one site to another or for a one-time-only project, and/or to make data from multiple sites publicly available.
On a social level, BIRN looks for groups that understand users’ data-sharing problems and can articulate how those issues affect them in day-to-day, real-world ways. Groups aren't expected to be technical wizards, but do need to be able to articulate specific data-sharing needs and problems.
BIRN contributes technical expertise, while users provide the knowledge specific to their fields. For instance, BIRN can advise on how to go about defining user needs and requirements, but only users can determine specifically what those factors should be. Because BIRN isn't a plug-and-play, off-the-shelf product, the network seeks prospective users who are committed to conceiving, designing, building and implementing the best solution for their circumstances.
To become members, groups begin by filling out a contact form on the BIRN website. A BIRN team member responds, and if its services appear to be a good match, s/he typically refers questioners to a BIRN member or WG for more in-depth conversations.
WGs typically discuss whether BIRN’s capabilities will address the group's data usage requirements, which BIRN tools and areas of expertise would fit best, and related issues. BIRN strongly encourages inquiries from biomedical research groups nationwide.