Recommendation 7 Federal research agencies (e.g., NCI, AHRQ, VA) should expand support for health services research, especially studies based on the linkage of cancer registry to administrative data and special studies of cases sampled from cancer registries. Resources should also be made available through NPCR and SEER to provide technical assistance to states to help them expand the capability of using cancer registry data for quality improvement initiatives. NPCR should also be supported in its efforts to consolidate state data and link them to national data files.

Achieving the Promise: Transforming Mental Health Care in America (New Freedom Commission on Mental Health, 2003)

Recommendation 6.1 Use health technology and telehealth to improve access and coordination of mental health care, especially for Americans in remote areas or in underserved populations.

Recommendation 6.2 Develop and implement integrated electronic health record and personal health information systems.

Quality Improvement

Childhood Cancer Survivorship: Improving Care and Quality of Life (IOM and NRC, 2003)

Recommendation 1 Develop evidence-based clinical practice guidelines for the care of survivors of childhood cancer. The NCI should convene an expert group of consumers, providers, and researchers to review available clinical practice guidelines and agree upon an evidence-based standard for current practice. For areas where bodies of evidence have not been rigorously evaluated, AHRQ Evidence Based Practice Centers should be charged to review the evidence. When evidence upon which to make recommendations is not available, the expert group should identify areas in need of research.

Recommendation 2 Define a minimum set of standards for systems of comprehensive, multidisciplinary follow-up care that link specialty and primary care providers, ensure the presence of such a system within institutions treating children with cancer, and evaluate alternative models of delivery of survivorship care.

  • The NCI should convene an expert group of consumers, providers, and health services researchers to define essential components of a follow-up system and propose alternative ways to deliver care. Consideration could be given to long-term follow-up clinics, collaborative practices between oncology and primary care physicians, and other models that might be dictated by local practices and resources, patient and family preferences, geography, and other considerations. Any system that is developed should assure linkages between specialty and primary care providers.

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