Faculty of Medicine, University Duisburg-Essen, IMIBE, Essen, Germany.
Faculty of Health/School of Medicine, Witten/Herdecke University, Witten, Germany.
BMC Med Inform Decis Mak. 2024 May 27;24(1):136. doi: 10.1186/s12911-024-02535-x.
The selection of data elements is a decisive task within the development of a health registry. Having the right metadata is crucial for answering the particular research questions. Furthermore, the set of data elements determines the registries' readiness of interoperability and data reusability to a major extent. Six health registries shared and published their metadata within a German funding initiative. As one step in the direction of a common set of data elements, a selection of those metadata was evaluated with regard to their appropriateness for a broader usage.
Each registry was asked to contribute a 10%-selection of their data elements to an evaluation sample. The survey was set up with the online survey tool "LimeSurvey Cloud". The registries and an accompanying project participated in the survey with one vote for each project. The data elements were offered in content groups along with the question of whether the data element is appropriate for health registries on a broader scale. The question could be answered using a Likert scale with five options. Furthermore, "no answer" was allowed. The level of agreement was assessed using weighted Cohen's kappa and Kendall's coefficient of concordance.
The evaluation sample consisted of 269 data elements. With a grade of "perhaps recommendable" or higher in the mean, 169 data elements were selected. These data elements belong preferably to groups' demography, education/occupation, medication, and nutrition. Half of the registries lost significance compared with their percentage of data elements in the evaluation sample, one remained stable. The level of concordance was adequate.
The survey revealed a set of 169 data elements recommended for health registries. When developing a registry, this set could be valuable help in selecting the metadata appropriate to answer the registry's research questions. However, due to the high specificity of research questions, data elements beyond this set will be needed to cover the whole range of interests of a register. A broader discussion and subsequent surveys are needed to establish a common set of data elements on an international scale.
在健康登记册的开发过程中，数据元素的选择是一项决定性的任务。拥有正确的元数据对于回答特定的研究问题至关重要。此外，数据集在很大程度上决定了登记册的互操作性和数据可重用性的准备程度。六个健康登记处通过德国资助倡议共享和发布了他们的元数据。作为朝着共同数据集迈出的一步，评估了这些元数据中的一部分，以确定其是否适合更广泛的使用。
每个登记处都被要求从其数据元素中选择 10%作为评估样本。该调查是使用在线调查工具“LimeSurvey Cloud”进行的。各登记处及其配套项目均参与了该调查，每个项目有一票。数据元素按照内容组提供，并询问数据元素是否适合更广泛的健康登记处。该问题可以使用五级李克特量表回答。此外，还允许“无答案”。使用加权 Cohen's kappa 和 Kendall 一致性系数评估一致性程度。
评估样本由 269 个数据元素组成。根据平均值的“可能推荐”或更高等级，选择了 169 个数据元素。这些数据元素主要属于人口统计学、教育/职业、药物和营养组。与评估样本中数据元素的百分比相比，有一半的登记处的重要性降低，一个登记处保持稳定。一致性水平是适当的。
调查显示了一组 169 个推荐用于健康登记处的数据元素。在开发登记册时，该数据集可以为选择适合回答登记册研究问题的元数据提供有价值的帮助。然而，由于研究问题的高度特殊性，需要超出该数据集的数据元素来涵盖登记处的全部利益范围。需要进行更广泛的讨论和随后的调查，以在国际范围内建立一套共同的数据元素。
