Capturing Demographic, Health-Related, and Psychosocial Variables in a Standardized Manner: Towards Improving Cancer...

Determining factors influencing patient participation in and adherence to cancer screening recommendations is key to successful cancer screening programs. However, the collection of variables necessary to anticipate patient behavior in cancer screening has not been systematically examined. Using lung cancer screening as a representative example, we conducted an exploratory analysis to characterize the current representations of 18 demographic, health-related, and psychosocial variables collected as part of a conceptual model to understand factors for lung cancer screening participation and adherence. Our analysis revealed a lack of standardization in controlled terminologies and common data elements for these variables. For example, only eight (44%) demographic and health-related variables were recorded consistently in the electronic health record. Multiple survey instruments could collect the remaining variables but were highly inconsistent in how variables were represented. This analysis suggests opportunities to establish standardized data formats for psychological, cognitive, social, and environmental variables to improve data collection.