FORT LAUDERDALE, Fla--There is a void of outcomes data in cancer that the National Comprehensive Cancer Network (NCCN) hopes to fill, said Jane Weeks, MD, at the NCCN's first annual conference.
Dr. Weeks pointed out that the Agency for Health Care Policy and Research, the federal body responsible for performing outcomes research and developing practice guidelines, did not include a single cancer diagnosis in its original 14 projects.
The NCCN, made up of 15 member institutions (see Table 1), has made a decision to invest in outcomes research, said Dr. Weeks, assistant professor of medicine, Harvard, and director of Dana-Farber's Center for Outcomes and Policy Research.
She called the network "an ideal source of data for outcomes studies" for a number of reasons: the geographic variability of the member institutions and the subsequent variability in patterns of care; the variability of practices within the institutions, even within similar areas; and the innovative as well as standard approaches being used in the NCCN member institutions.
She also cited the willingness of these institutions and their clinicians to invest the resources necessary to collect and analyze outcomes data, and the critical mass of clinical experts and health services researchers within the member institutions.
To accomplish its goals for outcomes research (see Table 2), Dr. Weeks said, the NCCN began by taking an inventory of the existing institutional and national data sources and mechanisms of data collection within the member institutions.
The data inventory project found that an enormous amount of data is currently being collected in the NCCN institutions, "but it was clear that data collection efforts by one person in a given institution were often unfamiliar to other people collecting data in the same institution."