Informatics and Information Flow
Goal
The Challenge
Progress Toward Meeting the Challenge
2003 Plan and Budget Increase Request
Goal
Create an informatics infrastructure that enhances information and resource exchange among researchers.
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The Challenge
Informatics involves the use of information technology to integrate and make available emerging biomedical information.
An example from human genetics research highlights the breadth of this need. The approximately 30,000 genes within the human genome along with millions of possible variations have been mapped, cataloged, and made available to cancer researchers. Furthermore, a number of genes can be expressed differently among thousands of different cancers. To add to this information, the number of drugs targeted to interact with certain genes and related proteins is multiplying every day. Other areas of cancer research are also generating a comparable avalanche of information.
NCI's challenge is to develop informatics systems to effectively integrate and share this knowledge and to use it to improve the treatment and delivery of care to cancer patients.
We envision meeting this challenge with a Cancer Informatics Infrastructure (CII) composed of three interrelated components.
- A knowledge management core that works to standardize information and data use by all NCI programs. This core provides structure and consistency to the CII.
- Information technology tools that link to the core and allow the capture, analysis, application, and re-use of information.
- Experts from diverse areas of scientific research, including informatics, who apply these tools to problem solving in cancer research and care.
The CII will create electronic interfaces among cancer researchers, reaching and connecting basic, translational, clinical, and population-based research communities.
Achieving this goal will require the involvement of the entire cancer research community, including strategic partnerships with commercial, academic, and other governmental groups to:
- Broaden the base of interoperable tools, data, and infrastructure.
- Broker the application of this infrastructure in all fields of cancer research.
- Ensure that the infrastructure can evolve to reflect the ever-changing research landscape.
- Provide for cross training of scientists who will bridge the gap between the informatics and biomedical research communities.
The efficient, comprehensible, and easy access to varied collections of cancer knowledge will dramatically improve the rapid translation of research observations into clinical and public health interventions.
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Progress Toward Meeting the Challenge
NCI has made much progress in creating and implementing its informatics system. Our progress includes the following important achievements.
Standards-Based Knowledge Management
NCI Cancer Informatics Technology Tools
Informatics for Cancer Research and Care
Standards-Based Knowledge Management
NCI's Center for Bioinformatics (NCICB) was established in 2001 to provide standardized bioinformatics support and integration of NCI's wide-ranging research initiatives.
The center provides for the smooth progression of investigative efforts from the level of molecular biology and molecular genetics, through pre-clinical animal modeling, to the informed design of clinical trials. For example:
- To ensure that the needs of the cancer community are recognized in the standards-setting process, the NCICB has joined several national standards groups.
- We are building a repository to comprehensively store the data used by our programs in adherence with the international standards used by many other Federal organizations. This keystone effort will ensure that all data from NCICB supported programs can be easily shared, whether from clinical trials, animal model programs, basic research, or any other discipline.
- We are collaborating to create a unified national repository of health-related meta-data to describe much of the data held by NCI. The repository will be compliant with international standards and will make finding and using data held by NCI much easier.
- Regular seminars keep NCI and the public up to date on developments in informatics techniques, practices, and standards.
- Through the NCICB, NCI has developed and put into use common data elements - standard ways of referring to scientific phraseology - for breast, prostate, lung, and colon cancer, and for leukemia, and has provided electronic interfaces among our cancer research communities for information exchange.
- The NCI Enterprise Vocabulary Server (EVS) serves our science communities by organizing and translating their respective distinct, but overlapping terminology. The NCI Metathesaurus is used for translating among vocabularies used in different scientific specialties, and the NCI Thesaurus builds a common vocabulary.
- Other services integrate EVS databases and tools with other informatics systems and provide user-friendly access to diverse collections of cancer information.
Four inter-related research initiatives supported by the NCICB represent key areas of knowledge in cancer research. The Center supports and integrates the efforts of these initiatives with one another and with the larger cancer community.
- NCI's new clinical trials infrastructure has increased information sharing among many clinical trials and with other types of research efforts and has helped researchers organize and launch clinical trials faster and run them more efficiently.
For more on clinical trials, see NCI's Challenge: National Clinical Trials Program
- The Cancer Genome Anatomy Project (CGAP) informatics team has made dramatic strides in making genomic data from the broader scientific community easily available to cancer researchers in a format familiar to them, integrating cancer genetics information not easily available elsewhere.
For more on CGAP, see Extraordinary Opportunities for Investment: Defining the Signatures of Cancer Cells
- The Mouse Models of Human Cancer Consortium (MMHCC) informatics effort been instrumental in providing critical information and tools to MMHCC researchers and quickly integrating the results of MMHCC efforts for use by the cancer community.
For more on mouse models, see Spotlight on Research: Modeling Human Cancers in the Mouse
- The Director's Challenge Towards a Molecular Classification of Cancer was issued by the NCI Director in 1998 to stimulate the use of molecular technology for classifying tumors based on distinguishing molecular characteristics. The success of this effort is dependent on NCI's informatics tools and the flow of standardized information to and from other NCI initiatives and the greater research community.
For more on the Director's Challenge, see Extraordinary Opportunities for Investment: Molecular Targets for Prevention and Treatment
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Cancer Informatics Tools
NCI's informatics tools are promoting the efficient and safe delivery of effective cancer agents to the American public. Business support tools have been implemented to streamline procedures and processes in the clinical trial system. This effort has dramatically reduced the administrative burden on researchers and permitted stable staffing requirements in the face of increasing, sometimes doubling, workloads.
NCI has developed informatics tools to ensure clinical trial safety. Our standardization of business rules and toxicity terminology has improved reporting and assessment of previously unknown or severe toxicities from NCI-supplied investigational drugs. Success was such that the oncology community has asked that the improvements be applied to non-NCI cancer agents and to other research areas (e.g., AIDS trials, cardiovascular disease, and drug abuse).
NCI is developing integrated informatics to promote scientific planning. These tools are flexible and scalable to help databases remain current as new therapies and further advances in cancer biology are discovered. These tools are applied in numerous areas of research:
- Refining sophisticated cancer agents based on their mechanisms of action.
- Planning their clinical use.
- Reallocating staff to areas of scientific importance.
- Recruiting minority participants into clinical trials.
NCI is focusing on all aspects of software development for scientific management systems. We have introduced a process to manage all phases of NCI software development from start to finish. This project maximizes the effectiveness of the spectrum of NCI resources, including information flow, human resources, grant management, and space management.
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Informatics for Cancer Research and Care
Net-Trials™ is a Web-based clinical trials information system that supports every aspect of the trial, including information management, data analysis, and secure Internet access allowing real-time collaboration of multiple centers.
Net-Trials™ streamlines operations and improves:
- Data quality
- Patient safety monitoring
- Analysis of much larger groups of data across the entire clinical trials portfolio
Still under development, Net-Trials™ is being used by at least six clinical branches of NCI's Center for Cancer Research and has been piloted at several sites outside NCI's intramural program.
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The Plan - Informatics and Information Flow
Goal
Create a cancer informatics infrastructure that enhances information and resource exchange and integration among researchers working in diverse disciplines to facilitate the full spectrum of cancer investigations.
Fiscal Year 2003 Objectives, Milestones, and Funding Increases Needed
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| Objective 1: Through the NCI Center for Bioinformatics (NCICB), expand NCI's backbone informatics infrastructure to enable support and integration of NCI-supported basic, clinical, translational, and population research initiatives. |
- Expand the NCICB to provide additional support, enhance integration of data and development of tools emanating from NCI's Extraordinary Opportunities. Facilitate information exchange within and between NCI-supported research initiatives. Support the Cancer Molecular Analysis Project's specialized bench-to-bedside information integration and display.
| $29.00 M |
- Establish a toolbox of open-source informatics applications and services based on a common set of operating principles and standards that support NCI's diverse cancer research activities.
| $2.00 M |
- Develop a research infrastructure that uses a "standards stack," assembling common vocabulary, standard data elements, and information models to further the exchange of all types of cancer information and data among the cancer community.
| $5.00 M |
- Expand information technology-based support services to enhance planning, execution, and communication of the wide-ranging research portfolio supported by NCI.
| $10.00 M |
| TOTAL | $49.0 M |
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| Objective 2: Create a community matrix of interoperable data sources, analytic tools, and computational resources that provide an extensible plug- and- play informatics capability for the cancer research community.
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- Expand the informatics capacity of the larger cancer research community with partnerships to develop a standards-compliant infrastructure that can be used readily in conjunction with NCI applications and each partner's information systems. Establish a minimum of five academic, Government, and commercial strategic partnerships in a research park setting where all partners can work together to address bioinformatics questions.
| $15.00 M |
- Use a minimum of 20 investigator-based awards that build on the NCI informatics backbone to:1) Deploy the standards-based resources to the cancer research community to serve as the foundation for additional infrastructure and 2) Facilitate rapid deployment of related new research initiatives.
| $10.00 M |
| TOTAL | $25.0 M |
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| Objective 3: Expand the cancer research community's capacity to perform informatics research on a local institutional basis. |
- Establish a network of bioinformatics research centers to work with and through the NIH Biomedical Informatics Science and Technology Initiative, using a novel interdisciplinary management team to select and coordinate the centers.
| $5.00 M |
- Expand standards-compliant institutional infrastructure by providing infrastructure supplements to NCI-supported research organizations, supporting the growing need of investigator-initiated research to access state-of-the-art biocomputing tools and data.
| $10.00 M |
- Promote informatics training by encouraging recruitment of new scientists and cross training in a variety of life science research domains through 20 development and transition awards.
| $3.00 M |
| TOTAL | $18.0 M |
Learn more about current NCI research at the New Cancer Research Portfolio Web Site, the most comprehensive, easy to use source of information about NCI-supported research.
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