Cancer Burden of the Hopi Tribe: A Model for Collaboration

During the implementation of an NCI pilot grant to examine knowledge, attitudes and beliefs about cancer among Hopi women, a strong collaborative relationship was developed between the Hopi Women's Health Program and researchers from the University of Arizona (UA) College of Public Health. While completing the pilot project, Hopi Health Department officials and community members expressed a strong interest in quantifying the burden of cancer among their people. This information is critical to the development of a Hopi cancer prevention and control program; however, obtaining tribal-specific incidence data is challenged by the absence of tribal affiliation in the Arizona Cancer Registry (ACR). To address this need, the Hopi:UA relationship was expanded to include officials from the ACR. This relationship was developed through numerous in-person meetings, phone calls and email communications. Together, the partnership identified a three step process to help Hopi achieve their goal: 1) Hopi Tribal enrollment data will be matched to the ACR data to extract Hopi enrollees diagnosed with cancer since 1995, 2) data will be transferred to the UA for analysis of cancer incidence among Hopi living both off and on reservation and 3) technical assistance will be provided to a member of the Hopi tribe to enable a Hopi to perform future analyses on their own data. Implementation of this process will require a Tribal resolution, inter-government agreements, memorandum of understanding/data use agreements and IRB approvals.