caBIG

The cancer Biomedical Informatics Grid (caBIG) is an open source, open access information network with the mission of enabling secure data exchange throughout the cancer community. The initiative was developed by the National Cancer Institute (part of the National Institutes of Health) and is maintained by the Center for Biomedical Informatics and Information Technology (CBIIT).

Contents 1 History 2 Impact 3 Connections to Health Information Technology 4 Collaborations 5 Implementation 5.1 Adopt vs. Adapt 5.2 Programs 6 Open source 7 Criticism 8 See also 9 References 10 Further reading 11 External links

History

The National Cancer Institute (NCI) of the United States funded the cancer Biomedical Informatics Grid (caBIG) initiative in spring 2004, headed by Kenneth Buetow.^[1] It goal was to connect US biomedical cancer researchers using technology known as grid computing. The program, led by the Center for Bioinformatics and Information Technology (CBIIT), began with a 3-year pilot phase. The pilot phase concluded in March 2007, and 56 NCI-designated cancer centers started a trial.^[2]

In addition to caGrid, the underlying infrastructure for data sharing among organizations, caBIG developed software tools, data sharing policies, and common standards and vocabularies to facilitate data sharing. Many cancer researchers (2,000+ participants representing 700 organizations) are currently trialing caBIG.

Software tools targeted:

• Collection, analysis, and management of basic research data
• Clinical trials management, from patient enrollment to adverse event reporting and analysis
• Collection, annotation, sharing, and storage of medical imaging data
• Biospecimen management

Impact

caBIG sought to provide foundational technology that enables a new approach to biomedicine called a “learning healthcare system.”^[3] This model of research and care delivery relies on the rapid exchange of information between all sectors of research and care, so that researchers and clinicians are able to collaboratively review and accurately incorporate the latest findings into their work. The ultimate goal is to speed the biomedical research process, leading to improved patient outcomes and more efficient healthcare delivery. This new approach is often called Personalized Medicine where the right patient is given the right drug, at the right time. caBIG technology is powering novel adaptive clinical trials such as the I-SPY2 TRIAL^[4] (Investigation of Serial studies to Predict Your Therapeutic Response with Imaging and molecular AnaLysis 2), which are designed to use biomarkers to determine the appropriate therapy for women with advanced breast cancer. By collecting and analyzing clinical data in (nearly) real-time, patients' responses to therapy can be rapidly assessed to measure the effectiveness of a particular treatment, and clinical decisions may be refined to achieve optimal outcomes.

Connections to Health Information Technology

Health Information Technology (HIT) enables comprehensive management and secure exchange of medical information between researchers, health care providers, and consumers. When properly applied, HIT can improve the quality of health care; help prevent medical errors; and reduce redundancy, paperwork and administrative inefficiencies, ultimately leading to improved patient outcomes. caBIG supports national HIT initiatives including:

• Electronic Health Records – NCI and the American Society of Clinical Oncology (ASCO) have initiated a collaboration to create an oncology-specific EHR that utilizes caBIG standards for interoperability and that will enable oncologists to manage patient information in an electronic format that accurately captures the specific interventional issues unique to oncology.
• Family Health History Tool^[5] – CBIIT hosts the Family Health History Tool, a web-based application developed by the U.S. Department of Health and Human Services (HHS) to allow users to easily track and share family health information with healthcare providers so that it may be used to inform decisions about prevention, diagnosis and treatment to improve individual patient outcomes.
• Nationwide Health Information Network (NHIN) – An initiative to share patient clinical data across geographically disparate sources and create electronically-linked national health information exchange (HIE).

Collaborations

• BIG Health Consortium (BIG Health)^[6] – BIG Health was launched as a partnership of previously un-linked healthcare stakeholders who are now connected via caBIG. The Consortium supports personalized medicine by encouraging a collaborative approach to biomedical research and healthcare delivery.
• Health of Women Study – In July 2009, caBIG announced a collaboration with the Dr. Susan Love Research Foundation to build an online cohort of women willing to participate in clinical trials.^[7] Called the Army of Women, it had a goal of one million in its databse; by December 2009 the site was "launched", and about 30,000 women and men signed up by 2010.^[8]
• The Cancer Genome Atlas (TCGA) – caBIG forms the information infrastructure of The Cancer Genome Atlas (TCGA), an integrated database of molecular and clinical data. TCGA is a large-scale collaborative effort supported by the National Cancer Institute (NCI) and the National Human Genome Research Institute (NHGRI) to accelerate our understanding of the genetics of cancer using innovative genome analysis technologies. TCGA aims to characterize more than 10,000 tumors across at least 20 cancers by 2015. caBIG provides connectivity, data standards, and tools to collect, organize, share, and analyze the diverse research data from multiple laboratories and among different institutions that populate this database. Through the TCGA Data Portal,^[9] researchers and clinicians can easily perform complex queries, allowing unprecedented opportunities to discover and develop a new generation of targeted diagnostics, therapies, and preventive interventions for cancer.
• National Cancer Research Institute (NCRI) – Since 2007, NCI has been working with UK cancer research association, NCRI, to foster a partnership that will benefit global cancer research. The two organizations share a variety of technologies developed to enable collaborative research and the secure exchange of research data using caGrid and the NCRI Oncology Information Exchange (ONIX) portal.
• Duke University^[10]- Duke is leveraging several caBIG clinical trials tools in their collaboration with the Beijing Cancer Hospital of Peking University.
• Latin American Breast Cancer Study^[11] – The countries that make up the United States-Latin America Cancer Research Network (US-LA CRN) will link their research efforts through caBIG, to allow data- and knowledge-sharing in a recently launched a breast cancer study.

Implementation

Adopt vs. Adapt

Participating institutions may either “adopt” caBIG tools to share data directly through caGrid, or “adapt” commercial or in-house developed software to be caBIG-compatible. The caBIG program developed software development kits (SDKs) that support the creation of interoperable software tools, and detailed instructions on the process of adapting existing tools or developing new applications to be caBIG-compatible.

Programs

• Cancer Centers Program^[12] – Most of the 65 NCI-designated cancer centers use caBIG technology to report and retrieve data. caBIG was originally developed specifically to connect these centers as a way to enable collaborative research and eliminate data disconnects that slow down the development of personalized medicine.
• NCI Community Cancer Centers Program^[13] – The NCCCP is a program to test the concept of a national network of community-based cancer centers. Many of the 16 centers in the program are implementing caBIG tools in support of their research and care programs.
• Enterprise Support Network (ESN)^[14] – The ESN is a diverse collection of organizations that support the caBIG community by providing services, mentoring and expertise. The ESN program includes Knowledge Centers^[15] that provide domain-specific expertise to assist users about caBIG tools and their applications, and Support Service Providers,^[16] which are third party organizations that provide assistance to end-users and organizations adopting caBIG technology on a contract-for-services basis.

Open source

Since 2004, the caBIG program has established an important new model for open source communities – one that demonstrates a highly successful adaptation of earlier models to a public-private partnership. The caBIG program has produced new software for use in cancer research under contract to software development teams largely within the extramural research community. This has allowed the software to be produced by the teams who know best what the final products should do. Generally, these teams use in-house subject matter experts to define requirements, build functional software, and test the software as part of their own productions in their operations ensuring that it is a good fit across the potential user base. These teams also source the critical software engineering skills in exactly the same way that other government and commercial enterprises do – from the most readily available, best skilled, and most economical sources. The competitive proposal process ensures this engagement of resources and the best value to the American taxpayer for the project dollars expended. It is important to note that sometimes US based sources have not had the capacity or best economic value in these competitive bids.

The above description does apply to virtually any government contracted software development program. In general, the software assets that are produced are the property of the US government and the US taxpayers. Depending on the terms in specific contracts, they might be accessible only by request under the Freedom of Information Act (FOIA). The timeliness of response to such requests might preclude a requester from ever gaining any secondary value from software released under a FOIA request.

The caBIG program placed the all caBIG software in a software repository that is freely accessible to individuals and commercial enterprises for download. Just like any other open source development community, anyone can modify the downloaded software; however, the licensing applied to the downloaded software assets allows far greater flexibility than is typical. An individual or enterprise is allowed to contribute the modified code back to the caBIG program but is not required to do so. Likewise, the modifications can be made available as open source but are not required to be made available as open source. The caBIG licensing even allows the use of the caBIG applications and components, combined with additions and modifications, to be released as commercial products. These aspects of the caBIG program actually encourage commercialization of caBIG technology in a way that is generally atypical of open-source initiatives.

Some private companies claimed benefits from caBIG technology.^[17]

Criticism

By 2011, the project had spent an estimated $350 million.^[18] Although the goal was considered laudible, much of the software was unevenly adopted after being developed at great expense to compete with commercial offerings. In March 2011, an NCI working group assessment concluded that caBIG "...expanded far beyond those goals to implement an overly complex and ambitious software enterprise of NCI-branded tools, especially in the Clinical Trial Management System (CTMS) space. These have produced limited traction in the cancer community, compete against established commercial vendors, and create financially untenable long-term maintenance and support commitments for the NCL".^[2]

See also

• caGrid

References

Further reading

• Abernethy AP, Coeytauz R, Rowe K, Wheeler JL, Lyerly HK. Electronic patient-reported data capture as the foundation of a learning health care system. JCO. 2009;27:6522.
• Buetow KH. caBIG: proof of concept for personalized cancer care. JCO. 2009:27 Suppl 15S:e20712.
• Holford ME, Rajeevan H, Zhao H, Kidd KK, Cheung KH (2009). "Semantic web-based integration of cancer pathways and allele frequency data". Cancer Informatics 8: 19–30. PMC 2664696. PMID 19458791. http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pmcentrez&artid=2664696. 
• Huang T, Shenoy PJ, Sinha R, Graiser M, Bumpers KW, Flowers CR (2009). "Development of the Lymphoma Enterprise Architecture Database: A caBIG(tm) Silver level compliant System". Cancer Informatics 8: 45–64. PMC 2675136. PMID 19492074. http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pmcentrez&artid=2675136. 
• Kunz I, Lin MC, Frey L (2009). "Metadata mapping and reuse in caBIG". BMC Bioinformatics 10 Suppl 2: S4. doi:10.1186/1471-2105-10-S2-S4. PMC 2646244. PMID 19208192. http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pmcentrez&artid=2646244. 
• Novik Y, Escalon L, Rolnitzky L. Academic cancer researchers' perspective on a federally mandated centralized comprehensive database of all cancer clinical trial results. JCO. 2009;27:e17576.
• Ohmann C, Kuchinke W (2009). "Future developments of medical informatics from the viewpoint of networked clinical research. Interoperability and integration". Methods of Information in Medicine 48 (1): 45–54. PMID 19151883. http://www.schattauer.de/index.php?id=1268&L=1&pii=me09010045&no_cache=1. 
• Phan JH, Moffitt RA, Stokes TH, et al. (June 2009). "Convergence of biomarkers, bioinformatics and nanotechnology for individualized cancer treatment". Trends in Biotechnology 27 (6): 350–8. doi:10.1016/j.tibtech.2009.02.010. PMID 19409634. 
• Staes CJ, Xu W, LeFevre SD, et al. (2009). "A case for using grid architecture for state public health informatics: the Utah perspective". BMC Medical Informatics and Decision Making 9: 32. doi:10.1186/1472-6947-9-32. PMC 2707374. PMID 19545428. http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pmcentrez&artid=2707374. 
• Tan, Wei; Missier, Paolo; Madduri, Ravi; Foster, Ian (2009). Building Scientific Workflow with Taverna and BPEL: A Comparative Study in caGrid. 5472. pp. 118. doi:10.1007/978-3-642-01247-1_11. 
• Peter A. Covitz, Frank Hartel, Carl Schaefer, Sherri De Coronado, Gilberto Fragoso, Himanso Sahni, Scott Gustafson and Kenneth H. Buetow (April 23, 2003). "caCORE: A common infrastructure for cancer informatics". Bioinformatics 19 (18): 2404–2412. doi:10.1093/bioinformatics/btg335. 
• “Health IT gets personal,” InformationWeek (11/13/09)
• “Health data in the raw,” Government Health IT (11/6/09)
• “NCI to open research grid to cancer patient 'army',” Government Health IT (10/9/09)
• “GridBriefing: The future of Healthcare - eHealth and Grid Computing,” GridTalk (9/09)
• “Collaboration and Sustainability are Front and Center as caBIG Celebrates Fifth Anniversary,” GenomeWeb/BioInform (7/09)
• “Sharing the Wealth of Data,” Scientific American (5/09)
• “Translational Research Drives Demand for 'Virtual' Biobanks Built on caBIG Tools,” GenomeWeb/BioInfom (4/3/09)
• “Connecting the Cancer Community caBIG Time,” Bio-IT World (7/14/08)
• “Heading for the BIG Time,” The Scientist (4/08)
• Cancer research goes open Bit-Tech (6/23/08)

External links

• caBIG Consumer/User Website (non-technical)
• caBIG Community Website (technical)
• NCI Center for Biomedical Informatics and Information Technology (CBIIT)
• BIG Health Consortium
• caCORE