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一种用于生物医学研究中分布式数据源可行性分析的隐私保护方法。

A Privacy Preserving Approach to Feasibility Analyses on Distributed Data Sources in Biomedical Research.

作者信息

Scheel Heiko, Dathe Henning, Franke Thomas, Scharfe Tabea, Rottmann Thorsten

机构信息

Department of Medical Informatics, University Medical Center Göttingen.

DZHK (German Center for Cardiovascular Research).

出版信息

Stud Health Technol Inform. 2019 Sep 3;267:254-261. doi: 10.3233/SHTI190835.

Abstract

Funding agencies and field experts promote reuse of scientific data and biomaterial beyond the scope of the original project. The availability of research data, however, is limited by the interest of original authors as well as the privacy rights of the study participants, especially in the biomedical sciences. On the other hand, for an available data set to be a useful contribution to the scientific community, it has to be findable and accessible with reasonable effort. Therefore, using the R Shiny library, we designed and implemented a software for data discovery and feasibility analyses with compliance to regulatory and contractual regulations. Due to its genericity, it was successfully tested with heterogeneous data sets and ultimately applied to the data and biomaterial of the German Center for Cardiovascular Research (DZHK). The resulting tool - named the Feasibility Explorer - is publicly available and can be used by researchers to get an overview of data and biomaterial available in the DZHK and to select collectives in the process of submitting a usage application. To implement the rights of participants and original authors, data is integrated by querying the informed consent and not persistently stored. All calculations on the data are performed server-sided and only aggregated information is send to a client, whereas the extent of information was strictly limited to a necessary minimum that allows an applicant to assess whether an application is worthwhile.

摘要

资助机构和领域专家推动超出原始项目范围的科学数据和生物材料的再利用。然而,研究数据的可用性受到原始作者的意愿以及研究参与者的隐私权的限制,尤其是在生物医学领域。另一方面,要使一个可用的数据集对科学界做出有益贡献,它必须能够通过合理的努力被找到并获取。因此,我们使用R Shiny库设计并实现了一款用于数据发现和可行性分析的软件,该软件符合监管和合同规定。由于其通用性,它已成功地在异构数据集上进行了测试,并最终应用于德国心血管研究中心(DZHK)的数据和生物材料。由此产生的工具——名为可行性浏览器(Feasibility Explorer)——是公开可用的,研究人员可以使用它来了解DZHK中可用的数据和生物材料概况,并在提交使用申请的过程中选择样本集。为了落实参与者和原始作者的权利,数据是通过查询知情同意书来整合的,而不是永久存储。对数据的所有计算都在服务器端进行,只有汇总信息会发送给客户端,而信息的范围被严格限制在必要的最低限度,以便申请人能够评估申请是否值得。

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