Accelerating Innovation in Outcomes and Quality of Care Research Through Integration of Clinical Databases; Pediatric Oncology Experience in Egypt

Alfaar, A. S., Bakry M. S., Kamal M., Ezzat S., Zaky I., Taha H., et al. (2014).  Accelerating Innovation in Outcomes and Quality of Care Research Through Integration of Clinical Databases; Pediatric Oncology Experience in Egypt. American Society of Clinical Oncology.


Background: Children’s Cancer Hospital -Egypt was established to serve as the country major referral center. Within 6 years the hospital has received 13,865 patients with cancer among 19,744 screened ones. With this rapidly growing number the hospital looked for developing a reliable method for examining the quality of care and supporting health services research as an emerging field in the country. The aim of this paper is to describe the role of integrating several databases in providing a 360 view for healthcare picture. Methods: We have developed an online cancer registry database using RedCap data capture system to gather patients data from different sources. This database was integrated with the electronic medical records to share new patients data instantaneously. Two nurses were trained to curate the database daily and act as human quality control gateway. Cancer registry provided data about 19,927 patients were examined between 2007 and 2013. The second aspect was provided by digitizing and Optical Character Recognition of 12,573 pathology paper-based reports. Pathology reports were analysed electronically to extract dates, initial and final diagnoses, gross and microscopic pictures and markers used for diagnosis. A third aspect was added to the model by mining Radiology Information System database to extract 258,632 studies for all patients. Radiological studies were organized to show the type of investigation, time needed and outcome. Results: A unified comprehensive new database was developed showing uncountable number of quality of care indices and correlations between different initial and final timepoints. Those indicators included delay of diagnosis, reporting and difference in outcomes correlated with epidemiological aspects. The time used to develop this database was two weeks in the first time. A standard operating procedures was developed to decrease time during future updates. Conclusions: Accelerated pathway to research can be acquired in any settings including unprivileged low-middle income countries via structured reporting, integration between different databases and using simple information technology skills.