Development and implementation of a distributed integrated data-management system for pediatric hematology/oncology service: A modular approach for a clinical outcome and research information system

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Introduction: The role of a reliable data-management and information system in oncology services is well established. Being a specialized branch of medicine, outcome of the treatment efforts, besides other established risk factors, is also influenced by geographic and genetic makeup of the population being treated. This shapes the need for treatment modalities to be constantly updated in light of the outcome of previous cohorts of cases. Advances in diagnostic tools and identification of new risk factors also require a constant update of the data items being collected in such systems. Commercially available oncology data-management and information-processing systems are not always helpful in fulfilling the information needs of the health-care team and the hospital administrators. This eventually increases the maintenance cost of such systems through modifications and application of patches in some instances. We are reporting our experience of the successful development and implementation of a comprehensive, integrated, scalable, and robust data-management system for a pediatric hematology/oncology service. This can serve as a model for developing countries where cost of development and maintenance of information systems is still a significant factor contributing towards optimum patient care in pediatric hematology/oncology.
Results: The simplicity and scalable nature of the design of the system make it possible for it to be used for other non-hematology/oncology services like pediatrics, cardiology, congenital defects registries, or registries of inborn errors of metabolism for their data-management and retrieval systems.
Conclusion: In-house development of a large-scale data-management system for pediatric hematology/oncology service is efficient and cost effective in terms of development time and resources.


This work was published before the author joined Aga Khan University

Publication (Name of Journal)

Journal of Registry Management