WHAT WOULD THE IDEAL CANCER CARE DATA SYSTEM LOOK LIKE?

There is no national cancer care data system in the United States. Like the U.S. healthcare system, the data systems available to assess the quality of care on a national or regional basis are fragmented (Pollock, 1997). Advancing quality of care involves applying data in at least three ways:

  1. assessing levels and trends in quality of care for whole populations (e.g., the nation, by region, or by state) to identify the magnitude of quality problems and their distribution,

  2. determining correlates of quality cancer care (e.g., characteristics of patients and health systems) to elucidate potential causal factors, and

  3. measuring and monitoring the quality of cancer care within systems of care to promote quality improvement and allow purchasers and the public to hold systems and providers accountable for the care they deliver.

Health services researchers have creatively exploited available databases to meet these objectives, but most sources can be critiqued on one or more important grounds—a lack of geographic representation or the absence of critical data elements needed to adjust results to make comparisons. The board concluded that to meet national quality-of-care objectives, a cancer care data system (which could include several distinct databases) would have the following 10 attributes:

  1. 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 end-of-life care.

  2. 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.

  3. Standard reporting of cancer stage, comorbidity, and processes of care—national quality assessments depend on the uniform recording of data elements needed to accurately assess care.

  4. National, population-based case selection—complete ascertainment of incident cancer cases by cancer registries is a prerequisite for national quality assessments, allowing case selection for studies whose results can be generalized to the total population, as well as assessments of quality for important subgroups, for example, individuals of low socioeconomic status, and individuals enrolled in certain types of health plans or delivery systems.

  5. Repeated cross-sectional studies to monitor national trends—a series of measures is needed to monitor progress over time.



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