Computerized cancer registries solutions - a systematic review (Preprint)

BACKGROUND A cancer registry (CR) is typically a standardized tool to produce population-based data on cancer incidence and survival. Cancer registries aim to retrieve and store information on all cancer cases occurring in a defined population. The main sources of data on cancer cases usually include treatment, diagnostic facilities (oncology centres or hospital departments, pathology laboratories, or imaging facilities etc.) and the official territorial death registry. OBJECTIVE The aim of this study is to assess the actual solutions for cancer registries and determine and understand its main requirements. METHODS To achieve this goal, we have made a systematic review based on a comprehensive qualitative research, following the PRISMA statement framework. Four distinct databases were searched: Medline; ISI Web of Knowledge, IEEE Xplore and Scopus with the query “cancer registries” [All Fields] AND computerized [All Fields]. The inclusion criteria include references from five key-concepts: data collection; standards; quality control, data protection and data exploration. For the process final review, we have involved the participation of three medical informatics professionals. RESULTS From a total of 54 articles, 10 accomplished the inclusion criteria and were included in the analysis. Cancer registries systems had in general problems related to the lack of a fully automatic integration of data from different sources, difficulty in automatize data quality control routines and a lack of harmonization in terms of standards (both communication and terminologies standards). Many tasks are still performed manually implying an extra effort from the human resources team that results in a substantial delay in survival and incidence reports production and more data inconsistencies and errors. CONCLUSIONS It is essential to automatize the data linking integration between different healthcare institutions. However, it is important to consider a balance between the preservation of data integrity and the patient’s privacy, whilst enabling meaningful state of the art continuous research to improve people’s health and the general quality of care. Healthcare institutions must abide and comply with the changes imposed by the much more stringent data privacy protection regulations imposed by the GDPR (General Data Protection Regulation), resulting on new rigorous compliance obligations on privacy and security that all CRs across Europe must be ready to comply.