Advancing Medical Informatics
NCI is well positioned to support the President's call for Americans to have electronic health records within the next ten years. Several NCI-supported programs are already contributing to the American Health Information Community efforts to promote common standards and interoperability. Medical information systems will provide access to data important for all aspects of cancer research. Electronic patient health records will streamline and personalize cancer clinical trials.
The cancer Bioinformatics GridTM (caBIGTM) is enabling cancer researchers to locate deidentified data on patients with common diagnoses, conditions, or treatments. Investigators use this information to determine patterns of disease, successful treatments, and outcomes that can complete the cycle of science from the bench to the bedside and back to the bench. The NCI Surveillance, Epidemiology, and End Results (SEER) database contains information on more than six million in situ and invasive cancer cases with approximately 360,000 new cases accessioned each year. The SEER registries routinely collect data on patient demographics, primary tumor site, morphology, histology, extent of disease, stage at diagnosis, first course of treatment, and follow-up.
NCI is actively integrating a range of diverse services and implementing a plan for bioinformatics that will further enhance our capabilities in medical informatics and support the national effort in health information systems. Our overall vision is to deliver patient-centric molecular medicine, drawn from richly diverse data sources, in support of improved prevention and treatment. Our enhanced infrastructure will also support cancer patients and their providers in managing the patient's health as cancer increasingly becomes a disease that people live with, rather than die from. We will continue to work closely with the Office of the National Coordinator for Health Information Technology to integrate the national and regional cancer infrastructure into the emerging national health information network and regional health information organizations and to share electronic platforms for use in the broader context.
Proposed New Investments
With new investments in Fiscal Year 2007, NCI will be able to provide continued technical expertise and models from our experience with cancer to support medical informatics and health information technology for use in both research and medical practice.
- Platforms for Data Exchange
NCI will continue to build upon the caBIGTM foundation for leveraging data, research tools, scientists, and organizations in an open environment with common standards and shared tools. CaBIGTM will be extended to deliver integrated data from diverse sources in support of patient-centric molecular medicine at the point of care. We will build upon the Cancer Research Network and regional networks developed by Cancer Centers to enhance community care. - Care Delivery and Research Coordination
NCI will support research initiatives and innovations to coordinate care delivery through the integration of electronic medical records systems. As the development of standards for these records and efforts to promote the use of electronic health records have become national priorities, it is important to guide information system developers regarding the needs of clinical care in order to ensure that the records facilitate rather than complicate practice. NCI will support work to help patients, providers, and organizations manage movement of information and coordination of care across the often complex set of providers throughout the course of cancer care. We will also support the national agenda for developing a functional and integrated nationwide electronic health record system. - Health Care Delivery Systems as Research Resources
NCI will support research to develop innovative approaches to evaluate and improve cancer care delivery through systems interventions that utilize medical informatics and Web-based systems within healthcare delivery. We will draw from advances in electronic medical records – including the patient/provider encounter, pharmaceutical, laboratory and claims information, and use of innovations in Internet systems for healthcare coordination – to improve communication and care coordination between providers and institutions, between patient and providers, and between communities and healthcare delivery institutions. We will work collaboratively with Federal and public partners engaged in improving healthcare delivery systems.
- Medical Informatics Infrastructure
NCI will develop a medical informatics infrastructure to link to national epidemiologic databases and to coordinate communication among the multiple participants in cancer care, including primary care practitioners. The system will make maximum use of NCI investments in cancer communication, statistical modeling, surveillance, cancer treatment, clinical trials, and health systems research and serve as a cancer-led model for the National Health Information Network.
- Enhanced Surveillance Data
NCI will develop software applications to expand and streamline the use of electronic pathology records to include data on insurance, co-morbidities, risk factors, genetic markers, recurrence, and treatment sequelae. Used in combination with existing SEER data, this information will dramatically improve the national capability to monitor and report population level cancer data and establish a model for possible use with other diseases. The effort will lead to increased knowledge of cancer etiology, more accurate cancer prognosis, expanded availability of information on cancer recurrence, and better estimates of the effects of co-morbidities on cancer outcomes for different population groups.
NCI will need a budget increase of $80 million in Fiscal Year 2007 to support the National health information technology efforts and develop cancer-specific applications in medical informatics for use in biomedical research and clinical practice.
