Pigeot Iris, Bongaerts Brenda, Eberle Andrea, Katalinic Alexander, Kieschke Joachim, Luttmann Sabine, Meyer Martin, Nennecke Alice, Rathmann Wolfgang, Stabenow Roland, Wilsdorf-Köhler Heide, Kollhorst Bianca, Reinders Tammo
Leibniz-Institut für Präventionsforschung und Epidemiologie - BIPS, Achterstr. 30, 28359, Bremen, Deutschland.
Fachbereich Mathematik und Informatik, Universität Bremen, Bremen, Deutschland.
Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2022 May;65(5):615-623. doi: 10.1007/s00103-021-03475-x. Epub 2021 Dec 23.
In recent years, there has been an increasing demand for the reuse of research data in accordance with the so-called FAIR principles. This would allow researchers to conduct projects on a broader data basis and to investigate new research questions by linking different data sources.
We explored if nationwide linking of claims data from statutory health insurances (SHI) with data from population-based cancer registries can be used to obtain additional information on cancer that is missing in claims data and to assess the validity of SHI tumour diagnoses. This paper focuses on describing the specific requirements of German federal states for such data linkage.
The Pharmacoepidemiological Research Database GePaRD at the Leibniz Institute for Prevention Research and Epidemiology - BIPS and six cancer registries were used as data sources. The logistically complex direct linkage was compared with a less complex indirect linkage. For this purpose, permission had to be obtained for GePaRD and for each cancer registry from the respective responsible authority.
Regarding the linkage of cancer registry data with GePaRD, the cancer registries showed profound differences in the modalities for data provision, ranging from a complete rejection to an uncomplicated implementation of linkage procedures.
In Germany, a consistent legal framework is needed to adequately enable the reuse and record linkage of personal health data for research purposes according to the FAIR principles. The new law on the consolidation of cancer registry data could provide a remedy regarding the linkage of cancer registry data with other data sources.
近年来，按照所谓的FAIR原则对研究数据进行再利用的需求日益增加。这将使研究人员能够在更广泛的数据基础上开展项目，并通过链接不同数据源来研究新的研究问题。
我们探讨了将法定健康保险（SHI）的索赔数据与基于人群的癌症登记数据进行全国范围的链接，是否可用于获取索赔数据中缺失的关于癌症的额外信息，并评估SHI肿瘤诊断的有效性。本文重点描述德国联邦州对这种数据链接的具体要求。
使用莱布尼茨预防研究和流行病学研究所 - BIPS的药物流行病学研究数据库GePaRD和六个癌症登记处作为数据源。将逻辑上复杂的直接链接与不太复杂的间接链接进行了比较。为此，必须从各自的负责机构获得GePaRD和每个癌症登记处的许可。
关于癌症登记数据与GePaRD的链接，癌症登记处在数据提供方式上存在很大差异，从完全拒绝到链接程序的简单实施不等。
在德国，需要一个一致的法律框架，以便根据FAIR原则充分实现个人健康数据用于研究目的的再利用和记录链接。关于整合癌症登记数据的新法律可能为癌症登记数据与其他数据源的链接提供补救措施。
