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."