sound analyses (IOM, 1999a). Despite investments by federal, state, and private groups in cancer-related data systems, there are gaps in the availability of data needed to conduct quality-of-care studies, redundancies in data collection, and problems with the completeness, timeliness, and quality of the data that are collected. At the same time, there are tremendous opportunities to improve cancer care data systems through:
movement toward a comprehensive and coordinated national system,
leadership within the cancer care community,
cooperation among groups providing cancer data,
integration with national efforts to further quality of care, and
the application of new information technologies (e.g., computer-based patient records, Internet communications).
The board held a workshop in October 1999 to establish the characteristics of an ideal cancer care data system and to identify financial and other resources needed to help achieve that ideal. This report summarizes the workshop proceedings and board deliberations, then presents the board's recommendations for steps that can be taken to enhance current data systems to improve cancer care. The report addresses three questions:
What would the ideal cancer care data system look like?
How are current cancer data systems meeting the needs of healthcare systems?
What steps can be taken to enhance data systems so that they can be used to monitor and improve the quality of cancer care?
The board concluded that to meet national quality-of-care objectives, an ideal cancer care data system (which could include several distinct databases) would have the following 10 attributes:
A set of well-established quality-of-care measures—a single core set of quality measures must be developed, using the best available evidence for the full spectrum of an individual's care—from early detection to palliative and endof-life care.
Reliance on computer-based patient records for information on patient care and outcomes—adoption of information technology can improve the timeliness and accuracy of information on the quality of cancer care.
Standard reporting of cancer stage, presence of coexisting disease (i.e., comorbidity), and processes of care—national quality assessments depend on the uniform recording of data elements needed to accurately assess care.