Developing the required data set for the integration of breast cancer registry systems in Iran
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 be...
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| Format: | Article |
| Language: | English |
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Elsevier
2022-01-01
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| Series: | Informatics in Medicine Unlocked |
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| Online Access: | http://www.sciencedirect.com/science/article/pii/S235291482200154X |
| _version_ | 1798003091109314560 |
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| author | Esmat Mirbagheri Mohsen Shafiee Mostafa Shanbezadeh Hadi Kazemi-Arpanahi |
| author_facet | Esmat Mirbagheri Mohsen Shafiee Mostafa Shanbezadeh Hadi Kazemi-Arpanahi |
| author_sort | Esmat Mirbagheri |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-04-11T12:02:27Z |
| format | Article |
| id | doaj.art-f9958f6e950244c5b667e482537d8bbd |
| institution | Directory Open Access Journal |
| issn | 2352-9148 |
| language | English |
| last_indexed | 2024-04-11T12:02:27Z |
| publishDate | 2022-01-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Informatics in Medicine Unlocked |
| spelling | doaj.art-f9958f6e950244c5b667e482537d8bbd2022-12-22T04:24:48ZengElsevierInformatics in Medicine Unlocked2352-91482022-01-0132101011Developing the required data set for the integration of breast cancer registry systems in IranEsmat Mirbagheri0Mohsen Shafiee1Mostafa Shanbezadeh2Hadi Kazemi-Arpanahi3Health Information Management, School of Health Management and Information Sciences, Iran University of Medical Sciences, Tehran, IranDepartment of Nursing, Abadan University of Medical Sciences, Abadan, IranHealth Information Management, Department of Health Information Technology, School of Paramedical, Ilam University of Medical Sciences, Ilam, IranHealth Information Management, Department of Health Information Technology, Abadan University of Medical Sciences, Abadan, Iran; Department of Student Research Committee, Abadan University of Medical Sciences, Abadan, Iran; Corresponding author. Dept. of Health Information Technology, Abadan University of Medical Sciences, Abadan, Iran.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.http://www.sciencedirect.com/science/article/pii/S235291482200154XBreast neoplasmsRegistriesCommon data elementsInformation managementInformation systems |
| spellingShingle | Esmat Mirbagheri Mohsen Shafiee Mostafa Shanbezadeh Hadi Kazemi-Arpanahi Developing the required data set for the integration of breast cancer registry systems in Iran Informatics in Medicine Unlocked Breast neoplasms Registries Common data elements Information management Information systems |
| title | Developing the required data set for the integration of breast cancer registry systems in Iran |
| title_full | Developing the required data set for the integration of breast cancer registry systems in Iran |
| title_fullStr | Developing the required data set for the integration of breast cancer registry systems in Iran |
| title_full_unstemmed | Developing the required data set for the integration of breast cancer registry systems in Iran |
| title_short | Developing the required data set for the integration of breast cancer registry systems in Iran |
| title_sort | developing the required data set for the integration of breast cancer registry systems in iran |
| topic | Breast neoplasms Registries Common data elements Information management Information systems |
| url | http://www.sciencedirect.com/science/article/pii/S235291482200154X |
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