Process for determining the cancer burden of the Hopi Tribe

The Hopi Tribe is located in the northeastern part of Arizona on more than one million acres of federally reserved land. Tribally based community research, conducted in collaboration with University of Arizona researchers, has been successfully implemented on Hopi beginning with a cross-sectional community survey in 1993 and continuing with a second survey in 2006. Both surveys identified a strong community interest in cancer. This article reports on the process involved in a third study, in which official Hopi enrollment data were matched with Arizona Cancer Registry data. The process involved bringing in a new partner and obtaining tribal, state, and university approvals, as well as a signed data exchange agreement between the state and the Hopi Tribe. Technical implementation of the data match required computer programming and epidemiologic expertise, as well as an understanding of the community and the culture. Close collaboration among Hopi residents and university epidemiologists was critical.