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 with the National Institute of Nursing Research on end-of-life research (the lead NIH institute for this topic), but cannot discharge its major responsibilities in cancer research through that mechanism.
Recommendation 8: NCI should convene a State of the Science Meeting1on palliative care and symptom control. It should invite other National Institutes of Health and other government research agencies with shared interests should be invited to collaborate. The meeting should result in a high-profile strategic research agenda that can be pursued by NCI and its research partners over the short and long terms.
Recommendation 9: NCI should establish the most appropriate institu tional locus (or more than one) for palliative care, symptom control, and end-of-life research, possibly within the Division of Cancer Treatment and Diagnosis.
Recommendation 10: NCI should review the membership of its advisory bodies to ensure representation of experts in cancer pain, symptom man agement, and palliative care.
In 1999, NCI initiated State of the Science Meetings focused on specific types of cancer “to bring together the Nation’s leading multidisciplinary experts, to identify the important research questions for a given disease and help define the scientific research agenda that will assist us in addressing those questions.”