Identification of Key Elements in Prostate Cancer for Ontology Building via a Multidisciplinary Consensus Agreement

Simple Summary Prostate cancer (PCa) is one of the most common cancers and the second leading cause of cancer-related deaths in men in the United States. Accurate diagnosis, management, and posttherapy surveillance are critical for optimizing survival and patient quality of life. Sharing information among providers is a challenge due to the use of different health information systems or data capture workflows which can lead to ambiguity and misinterpretation of shared information. The aim of our study was to formulate an expert panel-based consensus on PCa-specific key data elements. Using the Delphi method, PCa experts developed a two-tiered thirty-item list of treatment-related toxicities for standardized clinical data capture. Additionally, four multi-domain symptom questionnaires were ranked, and definitions on disease control metrics were formalized. These findings have been used to develop a comprehensive operational ontology for PCa care that can facilitate knowledge sharing and scalable machine learning approaches. Background: Clinical data collection related to prostate cancer (PCa) care is often unstructured or heterogeneous among providers, resulting in a high risk for ambiguity in its meaning when sharing or analyzing data. Ontologies, which are shareable formal (i.e., computable) representations of knowledge, can address these challenges by enabling machine-readable semantic interoperability. The purpose of this study was to identify PCa-specific key data elements (KDEs) for standardization in clinic and research. Methods: A modified Delphi method using iterative online surveys was performed to report a consensus agreement on KDEs by a multidisciplinary panel of 39 PCa specialists. Data elements were divided into three themes in PCa and included (1) treatment-related toxicities (TRT), (2) patient-reported outcome measures (PROM), and (3) disease control metrics (DCM). Results: The panel reached consensus on a thirty-item, two-tiered list of KDEs focusing mainly on urinary and rectal symptoms. The Expanded Prostate Cancer Index Composite (EPIC-26) questionnaire was considered most robust for PROM multi-domain monitoring, and granular KDEs were defined for DCM. Conclusions: This expert consensus on PCa-specific KDEs has served as a foundation for a professional society-endorsed, publicly available operational ontology developed by the American Association of Physicists in Medicine (AAPM) Big Data Sub Committee (BDSC).