Lablans Martin, Bartholomäus Sebastian, Uckert Frank
Institute of Medical Informatics, University of Münster, Germany.
Stud Health Technol Inform. 2011;169:644-8.
Biomedical research requires large numbers of well annotated, quality-assessed samples which often cannot be provided by a single biobank. Connecting biobanks, researchers and service providers raises numerous challenges including trust among partners and towards the infrastructure as well as interoperability problems. Therefore we develop a holistic, open-source and easy-to-use IT infrastructure. Our federated approach allows partners to reflect their organizational structures and protect their data sovereignty. The search service and the contact arrangement processes increase data sovereignty without stigmatizing for rejecting a specific cooperation. The infrastructure supports daily processes with an integrated basic sample manager and user-definable electronic case report forms. Interfaces for existing IT systems avoid re-entering of data. Moreover, resource virtualization is supported to make underutilized resources of some partners accessible to those with insufficient equipment for mutual benefit. The functionality of the resulting infrastructure is outlined in a use-case to demonstrate collaboration within a translational research network. Compared to other existing or upcoming infrastructures, our approach has ultimately the same goals, but relies on gentle incentives rather than top-down imposed progress.
生物医学研究需要大量注释完善、经过质量评估的样本，而单个生物样本库往往无法提供这些样本。连接生物样本库、研究人员和服务提供商带来了诸多挑战，包括合作伙伴之间以及对基础设施的信任问题，还有互操作性问题。因此，我们开发了一个全面、开源且易于使用的信息技术基础设施。我们的联邦方法允许合作伙伴反映其组织结构并保护其数据主权。搜索服务和联系安排流程增强了数据主权，同时不会因拒绝特定合作而受到指责。该基础设施通过集成的基本样本管理器和用户可定义的电子病例报告表来支持日常流程。现有信息技术系统的接口避免了数据的重复录入。此外，支持资源虚拟化，以使设备不足的合作伙伴能够利用某些合作伙伴未充分利用的资源，实现互利共赢。通过一个用例概述了由此产生的基础设施的功能，以展示转化研究网络内的协作。与其他现有或即将出现的基础设施相比，我们 的方法最终目标相同，但依靠温和的激励措施而非自上而下强制推进。
