descriptor for human population groups, as it appropriately places emphasis on the range of cultural and behavioral factors, beliefs, lifestyle patterns, diet, environmental living conditions, and other factors that may affect cancer risk.
NCI's Surveillance, Epidemiology, and End Results (SEER) program was established to provide data on the incidence of cancer in selected geographic areas that may be generalized to the total U.S. population. At this time, the SEER program provides high-quality data that are the best approximation of a national cancer database. The SEER program, however, does not fully describe the burden of cancer for many U.S. ethnic minority and medically underserved populations. It lacks the necessary database concerning the disproportionate cancer incidence, mortality, and survival rates among ethnic minorities and medically underserved groups that would permit NCI to develop and evaluate effective cancer control strategies for these populations. These groups include lower-income or poverty-level whites, particularly those living in rural areas such as Appalachia; African Americans living in rural communities, particularly in the South; culturally diverse American-Indian populations; and Hispanics of national origins not currently included.
In addition, the SEER program, as with other NCI programs, fails to consistently collect and report on data for medically underserved populations. These groups, as noted above, suffer from cancer incidence and mortality rates that are disproportionately high and from low cancer survival rates. Medically underserved populations may be defined as low-income individuals, those without medical insurance, those who lack access to quality cancer care, or by other definitions. The committee, however, found no consistent definition of this population in the SEER program or in other NCI programs. A clear, consistent definition of what constitutes the medically underserved population is needed, and cancer surveillance reports should regularly include data on cancer incidence, mortality, and survival rates among the people who make up this population.
The committee finds that NIH, and particularly NCI, has funded an impressive array of research projects and training initiatives that may have a demonstrable impact in addressing the burden of cancer among ethnic minority and medically underserved populations. The committee concludes, however, that no blueprint or strategic plan to direct or coordinate this research activity appears to exist. As a result, model programs in one or more institutes are not replicated by other ICs where indicated, some areas of research emphasis receive greater attention than others, and overall