Disaggregated data and beyond: future queries in cancer control research

Abstract

The goal of health equity requires the collection and reporting of disaggregated data in underrepresented populations such as Asian American (AA) and Native Hawaiian and Other Pacific Islander (NHOPI) communities. A recent Department of Health and Human Services report outlines the necessity for disaggregated data, which would offer communities, providers, and planners better tools to address health problems. In a recent collaboration, the National Cancer Institute (NCI) and several registries published a series of articles tracking cancer incidence data on AA and NHOPI communities using data from the NCI's Surveillance, Epidemiology, and End Results (SEER) program. The findings indicate a need for concentrated focus and planning for the next stages of cancer prevention and control for AA and NHOPI subpopulations. In this article, we provide (i) the context for the perpetuation of the model minority myth as well as historical and sociocultural factors that have shaped health and disease for AA and NHOPI subgroups; (ii) potential strategies for research and public health policy for AA and NHOPI groups using subpopulation-based approaches while addressing challenges and limitations; and (iii) a portfolio analysis of currently funded projects within the NCI/DCCPS to identify gaps and areas of potential research.