people at the end of life. Additional studies are needed to identify non financial barriers to appropriate end-of-life care.
For many aspects of cancer care, it is not yet possible to assess quality because the first step in quality assessment has not been taken—the conduct of clinical trials. Consequently, for many types of cancer, answers to the following basic questions are not yet available:
RECOMMENDATION 6: Federal and private research sponsors such as the National Cancer Institute, the Agency for Health Care Policy and Research, and various health plans should invest in clinical trials to address questions about cancer care management.
For some questions regarding cancer management, a health services research component could possibly be integrated into a clinical trial designed to assess the efficacy of a new treatment. For other questions, innovative units of randomization could be used, for example, randomizing providers (instead of patients) to test different clinical management strategies. Such trials have been used to assess educational and service delivery topics (e.g., colorectal screening performed by nurse clinicians, counseling patients to quit smoking).
RECOMMENDATION 7: A cancer data system is needed that can provide quality benchmarks for use by systems of care (such as hospitals, provider groups, and managed care systems).
Toward that end, in 1999, the National Cancer Policy Board will hold workshops to:
The second step of quality assessment involves surveillance—making sure that evidence regarding what works is applied in practice. Ideally, quality assessment studies 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 available evidence on the quality of cancer care is far from this ideal.