Using Electronic Health Record System to Establish a National Patient's Registry : Lessons learned from the Cancer Registry in Iran

Background: In Iran, the Integrated Electronic Health Record system, called SEPAS, has been established to store all patient encounters of individuals referring to healthcare facilities. Objective: We aimed to develop a model for cleaning SEPAS and applying its data in other databases. Methods: We used cancer data from SEPAS as the sample. We developed a guideline to identify codes for cancerrelated diagnoses and services in the database. Furthermore, we searched the SEPAS database based on ICD-10 and the diagnosis description in English and Farsi in an Excel sheet. We added codes and descriptions of pharmaceuticals and procedures to the list. We applied the above database and linked it to the patient records to identify cancer patients. A dashboard was designed based on this information for every cancer patient. Results: We selected 5,841 diagnostic codes and phrases, 9,300 cancer pharmaceutics codes, and 452 codes from cancer-specific items related to the diagnostic procedures and treatment methods. Linkage of this list to the patient list generated a database of about 197,164 cancer patients for linkage in the registry database. Conclusions: Patient registries are one of the most important sources of information in healthcare systems. Data linkage between Electronic Health Record Systems (EHRs) and registries, despite its challenges, is profitable. EHRs can be used for case finding in any patient registry to reduce the time and cost of case finding.

Automated summary

Iran has established the Integrated Electronic Health Record System (SEPAS) to store patient encounters. This study aims to develop a model for cleaning and utilizing SEPAS data in other databases. The results demonstrate that linking SEPAS with patient records allows the design of a dashboard for cancer patients based on relevant information.