identified major barriers that impede access to quality cancer care;
defined quality cancer care and described its measurement;
provided examples of problems that limit early detection, accurate diagnosis, optimal treatment, and responsive supportive care;
reviewed and critiqued systems of accountability that are in place to help ensure the receipt of quality cancer care;
assessed whether ongoing cancer-related health services research is addressing outstanding questions about the quality of cancer care; and
presented recommendations to enhance cancer care for consideration by Congress, public and private healthcare purchasers, health plans, individual consumers, healthcare providers, and researchers (see report summary in Appendix A).
The board found that it was difficult to judge the quality of contemporary cancer care practice from available sources because of:
a lack of current data (i.e., many published studies rely on the experience of patients diagnosed and treated in the 1980s),
limited information on the care experience across geographic areas and sites of care, and
methodological shortcomings (e.g., a lack of control for important clinical characteristics, such as the presence of diseases other than cancer).
The board concluded that a cancer data system is needed that can provide quality benchmarks for use by systems of care (e.g., hospitals, provider groups, and managed care systems). An ideal data system would include recently diagnosed individuals with cancer in care settings representative of contemporary practice across the country, using information sources with sufficient detail to allow appropriate comparisons. The board, recognizing that current data systems and quality assessments were far from this ideal, held a workshop in October 1999 to:
identify how best to meet the data needs for cancer in light of quality monitoring goals,
identify financial and other resources needed to improve the cancer data system to achieve quality-related goals, and
develop strategies to improve data available on the quality of cancer care.
This report summarizes the workshop proceedings and board deliberations, then presents the board's recommendations for action (see workshop agenda and list of participants in Appendix B). The report addresses three questions:
What would the ideal cancer care data system look like?