Recommendation 6: Best available practice guidelines should dictate the standard of care for both physical and psychosocial symptoms. Care sys tems, payers, and standard-setting and accreditation bodies should strongly encourage their expedited development, validation, and use. Pro fessional societies, particularly the American Society of Clinical Oncol ogy, the Oncology Nursing Society, and the Society for Social Work On cology, should encourage their members to facilitate the development and testing of guidelines and their eventual implementation, and should pro vide leadership and training for nonspecialists, who provide most of the care for cancer patients.

Recommendation 7: The recommendations in the NCPB report Enhancing Data Systems to Improve the Quality of Cancer Care (see Appendix B) should be applied equally to palliative and end-of-life care as to other aspects of cancer treatment. These recommendations include

  • developing a core set of cancer care quality measures;

  • increasing public and private support for cancer registries;

  • supporting research and demonstration projects to identify new mechanisms to organize and finance the collection of data for cancer care quality studies;

  • supporting the development of technologies, including computer- based patient record systems and intranet-based communication systems, to improve the availability, quality, and timeliness of clinical data rel evant to assessing quality of cancer care;

  • expanding support for training in health services research and other disciplines needed to measure quality of care;

  • increasing support for health services research aimed toward im proved quality of cancer care measures;

  • developing models for linkage studies and the release of confiden tial data for research purposes that protect the confidentiality and privacy of health care information; and

  • funding demonstration projects to assess the impact of quality moni toring programs within health care systems.

Research on palliative care for cancer patients has had a low priority at NCI, and as a result, few researchers have been attracted to the field and very few relevant studies have been funded over the past decades. NCI should continue to collaborate on end-of-life research with the National Institute of Nursing Research (the lead NIH institute for this topic) but cannot discharge its major responsibilities in cancer research through that mechanism.



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