Paydar Somayeh, Pahlevanynejad Shahrbanoo, Asadi Farkhondeh, Ehtesham Hamideh, Sabahi Azam
Assistant Professor of Health Information Management, Department of Health Information Technology, School of Allied Medical Sciences, Kermanshah University of Medical Sciences, Kermanshah, Iran.
Assistant Professor of Health Information Management, Department of Health Information Technology, School of Allied Medical Sciences, Semnan University of Medical Sciences, Semnan, Iran.
PLoS One. 2025 Jan 7;20(1):e0316791. doi: 10.1371/journal.pone.0316791. eCollection 2025.
Minimum Data Set (MDS) enables integration in data collection, uniform data reporting, and data exchange across clinical and research information systems. The current study was conducted to determine a comprehensive national MDS for the Epidermolysis Bullosa (EB) information management system in Iran. This cross-sectional descriptive study consists of three steps: systematic review, focus group discussion, and the Delphi technique. A systematic review was conducted using relevant databases. Then, a focus group discussion was held to determine the extracted data elements with the help of contributing multidisciplinary experts. Finally, MDSs were selected through the Delphi technique in two rounds. The collected data were analyzed using Microsoft Excel 2019. In total, 103 data elements were included in the Delphi survey. The data elements, based on the experts' opinions, were classified into two main categories: administrative data and clinical data. The final categories of data elements consisted of 11 administrative items and 92 clinical items. The national MDS, as the core of the EB surveillance program, is essential for enabling appropriate and informed decisions by healthcare policymakers, physicians, and healthcare providers. In this study, a MDS was developed and internally validated for EB. This research generated new knowledge to enable healthcare professionals to collect relevant and meaningful data for use. The use of this standardized approach can help benchmark clinical practice and target improvements worldwide.
最小数据集（MDS）有助于在数据收集、统一数据报告以及跨临床和研究信息系统的数据交换方面实现整合。当前的研究旨在为伊朗的大疱性表皮松解症（EB）信息管理系统确定一个全面的国家MDS。这项横断面描述性研究包括三个步骤：系统评价、焦点小组讨论和德尔菲法。使用相关数据库进行系统评价。然后，在多学科专家的帮助下，举行焦点小组讨论以确定提取的数据元素。最后，通过两轮德尔菲法选择MDS。使用Microsoft Excel 2019对收集的数据进行分析。德尔菲调查总共纳入了103个数据元素。根据专家意见，这些数据元素分为两大类：管理数据和临床数据。数据元素的最终类别包括11个管理项目和92个临床项目。国家MDS作为EB监测计划的核心，对于使医疗保健政策制定者、医生和医疗保健提供者能够做出适当和明智的决策至关重要。在本研究中，为EB开发并内部验证了一个MDS。这项研究产生了新知识，使医疗保健专业人员能够收集相关且有意义的数据以供使用。使用这种标准化方法有助于在全球范围内对临床实践进行基准测试并确定改进目标。
