Developing the required data set for the integration of breast cancer registry systems in Iran

Abstract

Background: Breast cancer is a major public health concern due to its increasing incidence and mortality rates. A large volume of data is generated from different healthcare settings with inconsistent and heterogeneous data frameworks. There is an increasing demand to integrate breast cancer data between various information systems to answer specific research questions and future clinical trials. Thus, this study aimed to develop a minimum data set (MDS) for integrating breast cancer registry systems as a prerequisite for multi-center data exchange and research cooperation. Methods: The proposed MDS was developed using a multi-stage process. First, a systematic search was performed in scientific databases. Available data sets and registries related to breast cancer were also reviewed until data saturation. Then, a two-round Delphi survey was performed to reach an agreement on the primary data items. Finally, an additional Delphi stage was carried out to validate the content of the final MDS by calculating the individual item content validity index (CVI), overall scale CVI (S-CVI), and face validity. Results: After the literature review, the primary data set for breast cancer including 309 data items was identified. After the Delphi phase and calculation of I-CVI, S-CVI, and face validity, the breast cancer MDS was finalized with 14 classes and 205 data items. Conclusions: This agreed-upon MDS enables accurate, consistent, and comparable inter-organizational data collection between breast cancer care centers. This data homogeneity enhances the analytic power and depth of variables, thereby contributing to multicenter, large-scale, and more generalizable epidemiological and predictive studies on breast cancer.

Keywords

• Breast neoplasms
• Registries
• Common data elements
• Information management
• Information systems