Development of Information Road map for Personalized Colorectal Cancer Screening in Iran

Abstract

Background A data-driven colorectal cancer screening strategy based on personalized approach can improve health outcomes, facilitate early stratification of at-risk patients and reduce health care costs. This study aims to develop an information road map for personalized colorectal cancer screening in Iran. Methods This study is a Mix-Method Research (MMR) which consisted of three phases: phase I, development of a checklist with 275-items for assessing required data elements of personalized colorectal cancer screening; phase II, situational analysis of colorectal cancer screening dataset according to the checklist; phase III, development of national information road map for personalized colorectal cancer screening with in-depth interview and focus groups. Results Personalized datasets of colorectal cancer screening were defined in four dimensions, including clinical dataset (5 sub-dimensions, 162 items), genetic dataset (2 sub-dimensions, 67 items), demographic dataset (1 sub-dimension, 6 items) and a social determinant dataset (3 sub-dimensions, 40 items). The next step data elements of colorectal cancer screening based on personalized datasets were analyzed. Of the 275-items, only 96 items are recorded. Only 17.8% of clinical dataset of screening program were entered. The highest data elements of clinical dimension were related to pathological datasets (53.6%) in the present screening program. The lowest data elements of the clinical dimensions were related to the clinical history dataset (3.4%). 73% of pedigree data elements and 15.33% of social determinant datasets were entered. In the final step, a national information road map of personalized CRC screening with 6 layers (information leadership, personalized datasets, data integration, data architecture, data descriptor, and screening program layers) was developed. Conclusion Personalized screening based on integration dataset play a key role for the successful implementation of the screening program. Eliminating data deficiencies can improve the quality of documentation and may lead to improved screening performance. Therefore, standard datasets and indicators can help to identify information gaps and facilitate precise decision-making. Entering data was inadequate and poor in this study. Implementation of national road map can assist to improve the quality of data in personalized screening.