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Improving Palliative Care for Cancer
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 relevant to assessing quality of cancer care;
expanding support for training in health services research and otherdisciplines needed to measure quality of care;
increasing support for health services research aimed toward improved quality of cancer care measures;
developing models for linkage studies and the release of confidential data for research purposes that protect the confidentiality and privacyof health care information; and
funding demonstration projects to assess the impact of quality monitoring 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 NationalInstitutes of Health and other government research agencies with sharedinterests should be invited to collaborate. The meeting should result in ahigh-profile strategic research agenda that can be pursued by NCI and itsresearch partners over the short and long terms.
Recommendation 9: NCI should establish the most appropriate institutional locus (or more than one) for palliative care, symptom control, andend-of-life research, possibly within the Division of Cancer Treatment andDiagnosis.
Recommendation 10: NCI should review the membership of its advisorybodies to ensure representation of experts in cancer pain, symptom management, 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.”