Panel discussion. Data needs in cancer.

A prospective, comprehensive outcomes database was recently initiated by the National Comprehensive Cancer Network (NCCN) after a 2-year study to test data collection methods and systems. It started with data on 400 patients with newly diagnosed breast cancer at five NCCN sites, and over the next 3 years is projected to grow to include more than 12,000 patients with common cancers treated at all eligible NCCN sites. Among the goals of the database are: 1) to establish the capability to select, analyze, and report patterns of care and outcomes; 2) to allow NCCN members to assess their compliance with NCCN clinical practice guidelines and benchmark their performance against the rest of the NCCN; 3) to establish a true databased continuous quality improvement program; 4) to support clinical disease-oriented research and methodologic studies; and 5) to provide the NCCN with a vehicle for forging partnerships with others in the health-care field, such as the pharmaceutical industry, regulatory agencies, and accrediting bodies. Many of those potential partners were represented on this panel. Panelists discussed the data needs of their organizations, what they are doing to meet those needs, and how a comprehensive database will ultimately help improve patient care.

Practice guidelines: patients' perspective.

Although practice guidelines are important road maps for the management of patients with specific cancers, numerous ethical questions surrounding their use need to be resolved. Perhaps the most basic of these questions is, what constitutes quality cancer care and who will define it? A survey conducted by the National Coalition of Cancer Survivorship (NCCS) has identified three elements essential to quality cancer care: (1) access to services; (2) appropriate, timely referrals; and (3) access to clinical trials. One of the goals of practice guidelines should be to help empower patients; ie, to educate patients about what questions to ask in order to be informed healthcare consumers. Also, quantitative and qualitative data on the patient experience, elicited by well-developed methodologies, should be used to inform the guideline development process. Finally, guideline developers need to keep in mind that the focus of clinical guidelines is not the disease itself, but rather, the patient with that disease.

Advocacy: the cornerstone of cancer survivorship.

PURPOSE: This article describes a cancer-related advocacy skill set that can be acquired through a learning process. OVERVIEW: Cancer survivorship is a process rather than a stage or time point, and it involves a continuum of events from diagnosis onward. There exists little consensus about what underlying processes explain different levels of long term functioning, but skills necessary for positive adaptation to cancer have been identified from both the professional literature and from the rich experiences of cancer survivors. CLINICAL IMPLICATIONS: Healthcare practitioners need to be more creative and assertive in fostering consumer empowerment and should incorporate advocacy training into care plans. Strategies that emphasize personal competency and increase self-advocacy capabilities enable patients to make the best possible decisions for themselves regarding their cancer care. In addition, oncology practitioners must become informed advocacy partners with their patients in the public debate about healthcare and cancer care delivery.