Lessons Learned from a Community-Based Participatory Research Project to Improve American Indian Cancer Surveillance

Abstract

American Indian and Alaska Native cancer incidence data are limited by underreporting and misclassification. These populations also suffer from a history of research abuse. The project's goal was to use community-based participatory research (CBPR) to assess the local burden of cancer in the American Indian communities in Wisconsin and assess the accuracy of Wisconsin American Indian cancer data. Thirteen organizations partnered to conduct a retrospective review of American Indian clinics cancer cases. A match of the clinic identified cases with Wisconsin Cancer Reporting System records was then conducted. Relationship building, mutual education, and local engagement in data interpretation were significant factors in this project achieving its objectives and laying a foundation for future research partnerships. This project demonstrates the successful application of CBPR in a complex multisite project with multiple partners using collective resources to address cancer health disparities.