Standard Pediatric Oncology Data and Information Technology: Necessities for Cancer Care Management

Abstract

Cancer is the second leading cause of death in children and survivors require life time follow-up. There is agrowing recognition of the need to base cancer control policies on accurate, detailed and timely information oncancer management and outcomes. Coordination and central documentation ensure quality of treatment andpermit clinical and scientific investigations. The combined data thus obtained create a comprehensive pictureof disease, leading to more effective prevention and cure. Medical information can be gathered, processed andanalyzed in different ways and the importance of precise language cannot be overestimated. All medical activityarises from the ability to observe and communicate intelligibly and a lack of standardized documentationleads to insufficient integration of clinical work. The Minimal Standard data set is the result of a global effortto establish a common structure and vocabulary for electronic reports. In addition, information technologycombines research aspects of decision support and clinical documentation, allowing formal representation ofgeneral protocols, calculating of a particular therapy for a patient, data acquisition in the clinics. Our aim inthis papers is to stress the need for standard pediatric oncology data and information technology as an approachto cancer care management.