European Reference networks for rare diseases: what is the conceptual framework?

European Reference networks for rare diseases: what is the conceptual framework?
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DOI:
10.1186/s13023-017-0676-3
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发表时间:
2017-08-07
影响因子:
3.7
通讯作者:
Héon-Klin V
Héon-Klin V
中科院分区:
医学2区
文献类型:
--
作者:
Héon-Klin V

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《跨境医疗保健指令》(2011/24/EU)建立了一个强制性框架,以促进在欧洲参考网络内自愿开展合作。这些网络由中心和保健提供者组成。知识交流是这方面的一个中心问题。进行了详细的文献调查,以确定影响网络中信息和知识交流以及学习的最重要因素,以及如何支持这些因素。新的通信技术被确定为欧洲参考网络的关键工具。这项研究建议制定一个系统的知识使用和知识生成计划。这项研究的数据表明,未来的ERN将调解通过数字化和网络化的信息社会在医疗实践中。
With the Cross-Border Healthcare Directive (2011/24/EU) a mandatory framework was established to foster cooperation on a voluntary basis, within European Reference Networks (ERNs). These networks are composed of centres and healthcare providers. The exchange of knowledge is a central issue in this context. A detailed literature survey was carried out to determine the most important factors affecting information and knowledge exchange, as well as learning, in networks and how this can be supported. New communication technologies are identified as key tools for the European Reference Networks (ERN). This study recommends the elaboration of a systematic knowledge use and knowledge generation plan. The data of this study suggests that the future ERNs will mediate the adoption of the digitised and networked information society in medical practice.
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