A structured approach for data collection and visualization of the International Childhood Cancer Core Outcomes

Background: Insight into clinically relevant outcomes for children with cancer is crucial for improving treatment and follow-up strategies. The International Childhood Cancer Core Outcome Project developed a harmonized core outcome set, involving patients and providers across all types of childhood cancer. Objective: This paper highlights the strategy used at the Princess Máxima Center for pediatric oncology for the collection and visualization of the International Childhood Cancer Core Outcomes. Project phases: In phase 1, we created an overview of data elements related to patient data, cancer diagnosis, and outcomes, and mapped them to openEHR archetypes to optimize data processing. To classify cancer diagnosis according to the predefined 17 tumor subgroups, the International Classification of Childhood Cancer, Third Edition (ICCC-3) was used. In phase 2, we defined a data processing plan to extract these data elements from Electronic Health Records (EHR) and additional existing data sources. In phase 3, we designed a reporting dashboard to visualize results for healthcare professionals. Future perspectives and considerations: Local plans include further automation of data processing, unlocking missing data sources, and adding treatment data. Having a dedicated team and using openEHR with other data (coding) standards facilitates the process and future benchmarking opportunities. Conclusion: Developing a structured approach for data collection and visualization of the International Childhood Cancer Core Outcomes is an extensive process involving multiple steps. We describe our strategy to facilitate the monitoring of improvements in quality of care in childhood cancer centers and allow future benchmarking of the quality of care.