A Consensus-Driven Uniform Data Set for Head and Neck Cancer: Instrument Development and Evaluation Planning

Social determinants of health (SDoH) are key drivers of disparities in head and neck cancer (HNC) outcomes, contributing to late-stage presentation and increased mortality. Current research primarily focuses on individual and healthcare system factors, with insufficient representation of broader societal influences. To address this gap, we developed a uniform data set (UDS) integrating multilevel SDoH measures with oncologic healthcare delivery metrics. In phase I, an expert advisory board used an iterative process to establish consensus on key data elements for the UDS. In phase 2, a multi-institutional pilot study was launched at six academic centers to evaluate its feasibility. We present the outcomes of the expert panel and the implementation of the pilot study. Our co-developed data collection instrument supports the establishment of a UDS for identifying drivers of disparities in HNC. While multi-institutional pilots remain challenging, cultivating networks of institutions and institutional review boards (IRBs) facilitates collaborative evaluation of healthcare disparities.