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

Area of Science:

• Oncology
• Public Health
• Health Disparities Research

Background:

• Social determinants of health (SDoH) significantly influence head and neck cancer (HNC) outcomes.
• Existing research on HNC disparities often overlooks broader societal factors, focusing mainly on individual and healthcare system influences.

Purpose of the Study:

• To develop a uniform data set (UDS) that integrates multilevel SDoH measures with oncologic healthcare delivery metrics.
• To address the gap in understanding societal influences on HNC disparities.

Main Methods:

• Phase I involved an expert advisory board using an iterative process to achieve consensus on UDS data elements.
• Phase II implemented a multi-institutional pilot study across six academic centers to assess UDS feasibility.

Main Results:

• A consensus was reached on key data elements for the UDS through expert deliberation.
• The pilot study demonstrated the feasibility of collecting integrated SDoH and cancer care data across multiple institutions.

Conclusions:

• The co-developed data collection instrument facilitates the establishment of a UDS for identifying drivers of HNC disparities.
• Collaborative networks and institutional review board (IRB) engagement are crucial for overcoming challenges in multi-institutional healthcare disparity research.