Position statement on the role of healthcare professionals, patient organizations and industry in European Reference Networks
Position statement on the role of healthcare professionals, patient organizations and industry in European Reference Networks
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DOI：
10.1186/s13023-016-0383-5
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发表时间：
2016-01-25
影响因子：
3.7
通讯作者：
Hagendijk, Rob
中科院分区：
文献类型：
--
作者：
Hollak, Carla E. M.;Biegstraaten, Marieke;Hagendijk, Rob
欧盟关于建立欧洲参考网络（ERNs）的呼吁预计将于2016年第一季度启动。除其他事项外，ern旨在通过促进经验和知识的汇集和交流以及制定协议和指南，改善对整个欧盟低流行率或罕见疾病患者的护理。例如，在过去，在涉及昂贵的孤儿药的问题上，工业界在促进协商一致会议和出版指导方针方面发挥了重要作用。急诊室护士应为医护人员和病人提供一个独特的机会，让他们以独立的方式领导这些活动。但是，目前联网活动的费用不由欧盟基金支付，目前正在探索其他资金来源。人们日益关切的是，业界若参与为ern及其核心活动提供资金，可能会产生不当影响的风险。迄今为止，欧盟委员会（European Commission）还没有明确说明工业界将如何参与到ern中来。我们认为，为了维护科学的完整性和独立性，在ern、专家中心（ce）、医疗保健专业人员和患者组织的层面上，需要公共资金和利益冲突政策。需要特别注意的是，它涉及临床实践指南的发展。提出了一项利益冲突政策建议，这可能有助于建立一个框架，以促进合作，维护专业操守，并在患者、其组织和公众之间建立和维持公众的接受度和信任。
A call from the EU for the set-up of European Reference Networks (ERNs) is expected to be launched in the first quarter of 2016. ERNs are intended to improve the care for patients with low prevalent or rare diseases throughout the EU by, among other things, facilitating the pooling and exchange of experience and knowledge and the development of protocols and guidelines. In the past, for example where costly orphan drugs have been concerned, industry has played an important role in facilitating consensus meetings and publication of guidelines. The ERNs should provide a unique opportunity for healthcare professionals and patients to lead these activities in an independent way. However, currently costs for networking activities are not to be covered by EU funds and alternative sources of funding are being explored. There is growing concern that any involvement of the industry in the funding of ERNs and their core activities may create a risk of undue influence. To date, the European Commission has not been explicit in how industry will be engaged in ERNs. We believe that public funding and a conflict of interest policy are needed at the level of the ERNs, Centers of Expertise (CEs), healthcare professionals and patient organizations with the aim of maintaining scientific integrity and independence. Specific attention is needed where it concerns the development of clinical practice guidelines. A proposal for a conflict of interest policy is presented, which may support the development of a framework to facilitate collaboration, safeguard professional integrity and to establish and maintain public acceptability and trust among patients, their organizations and the general public.