Clinical data for paediatric research: the Swiss approach : Proceedings of the National Symposium in Bern, Switzerland, Dec 5-6, 2019.

Q2 Biochemistry, Genetics and Molecular Biology BMC Proceedings Pub Date : 2021-09-20 DOI:10.1186/s12919-021-00226-3
Milenko Rakic, Manon Jaboyedoff, Sara Bachmann, Christoph Berger, Manuel Diezi, Philipp do Canto, Christopher B Forrest, Urs Frey, Oliver Fuchs, Alain Gervaix, Amalia Stefani Gluecksberg, Michael Grotzer, Ulrich Heininger, Christian R Kahlert, Daniela Kaiser, Matthias V Kopp, Roger Lauener, Thomas J Neuhaus, Paolo Paioni, Klara Posfay-Barbe, Gian Paolo Ramelli, Umberto Simeoni, Giacomo Simonetti, Christiane Sokollik, Ben D Spycher, Claudia E Kuehni
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Abstract

Background and purpose: Continuous improvement of health and healthcare system is hampered by inefficient processes of generating new evidence, particularly in the case of rare diseases and paediatrics. Currently, most evidence is generated through specific research projects, which typically require extra encounters with patients, are costly and entail long delays between the recognition of specific needs in healthcare and the generation of necessary evidence to address those needs. The Swiss Personalised Health Network (SPHN) aims to improve the use of data obtained during routine healthcare encounters by harmonizing data across Switzerland and facilitating accessibility for research. The project "Harmonising the collection of health-related data and biospecimens in paediatric hospitals throughout Switzerland (SwissPedData)" was an infrastructure development project funded by the SPHN, which aimed to identify and describe available data on child health in Switzerland and to agree on a standardised core dataset for electronic health records across all paediatric teaching hospitals. Here, we describe the results of a two-day symposium that aimed to summarise what had been achieved in the SwissPedData project, to put it in an international context, and to discuss the next steps for a sustainable future. The target audience included clinicians and researchers who produce and use health-related data on children in Switzerland.

Key highlights: The symposium consisted of state-of-the-art lectures from national and international keynote speakers, workshops and plenary discussions. This manuscript summarises the talks and discussions in four sections: (I) a description of the Swiss Personalized Health Network and the results of the SwissPedData project; (II) examples of similar initiatives from other countries; (III) an overview of existing health-related datasets and projects in Switzerland; and (IV) a summary of the lessons learned and future prospective from workshops and plenary discussions.

Implications: Streamlined processes linking initial collection of information during routine healthcare encounters, standardised recording of this information in electronic health records and fast accessibility for research are essential to accelerate research in child health and make it affordable. Ongoing projects prove that this is feasible in Switzerland and elsewhere. International collaboration is vital to success. The next steps include the implementation of the SwissPedData core dataset in the clinical information systems of Swiss hospitals, the use of this data to address priority research questions, and the acquisition of sustainable funding to support a slim central infrastructure and local support in each hospital. This will lay the foundation for a national paediatric learning health system in Switzerland.

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儿科研究的临床数据:瑞士的方法:2019 年 12 月 5-6 日在瑞士伯尔尼举行的全国研讨会论文集。
背景和目的:由于生成新证据的过程效率低下,阻碍了健康和医疗保健系统的持续改善,尤其是在罕见病和儿科方面。目前,大多数证据都是通过特定的研究项目产生的,这些项目通常需要与患者进行额外的接触,成本高昂,而且从认识到医疗保健的特定需求到产生必要的证据来满足这些需求之间会有很长的延迟。瑞士个性化医疗网络(SPHN)旨在通过统一瑞士各地的数据并促进研究的可及性,改进对日常医疗保健过程中获得的数据的利用。统一全瑞士儿科医院健康相关数据和生物样本的收集(SwissPedData)"项目是一个由瑞士个性化医疗网络资助的基础设施开发项目,旨在识别和描述瑞士现有的儿童健康数据,并为所有儿科教学医院的电子健康记录商定一个标准化的核心数据集。在此,我们将介绍为期两天的研讨会的成果,旨在总结 SwissPedData 项目所取得的成就,将其置于国际背景下,并讨论未来可持续发展的下一步措施。目标受众包括制作和使用瑞士儿童健康相关数据的临床医生和研究人员:研讨会包括国内外主旨发言人的最新演讲、研讨会和全体讨论。本手稿分四个部分对演讲和讨论进行了总结:(I) 瑞士个性化健康网络的介绍和 SwissPedData 项目的成果;(II) 其他国家类似倡议的范例;(III) 瑞士现有健康相关数据集和项目概述;(IV) 研讨会和全体讨论的经验教训和未来展望总结:简化流程,将日常医疗保健过程中的初始信息收集、电子健康记录中的标准化信息记录和研究的快速访问联系起来,对于加快儿童健康研究并使其负担得起至关重要。正在进行的项目证明,这在瑞士和其他地方是可行的。国际合作对取得成功至关重要。接下来的步骤包括在瑞士各医院的临床信息系统中实施 SwissPedData 核心数据集,利用这些数据解决优先研究问题,以及获得可持续的资金以支持薄弱的中央基础设施和各医院的地方支持。这将为瑞士全国儿科学习保健系统奠定基础。
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来源期刊
BMC Proceedings
BMC Proceedings Biochemistry, Genetics and Molecular Biology-Biochemistry, Genetics and Molecular Biology (all)
CiteScore
3.50
自引率
0.00%
发文量
6
审稿时长
10 weeks
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