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在个性化医疗时代,患者生成的数据作为多学科和多利益相关者医疗保健系统影响的指标

Patient-Generated Data as Indicators of Impact of Multidisciplinary and Multi-stakeholder Health Care Systems, in the Age of Personalised Medicine.

作者信息

Zaratin Paola, Soelberg Sørensen Per, Fernández Óscar, Comi Giancarlo

机构信息

Scientific Research Department, Italian Multiple Sclerosis Society Foundation, Genoa, Italy.

Danish Multiple Sclerosis Center, Department Of Neurology, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark.

出版信息

Neurol Ther. 2025 Apr;14(2):437-446. doi: 10.1007/s40120-024-00706-6. Epub 2025 Feb 12.

Abstract

Using the case study of the Multiple Sclerosis Care Unit Initiative launched by the European Charcot Foundation, we discuss the need to evaluate the impact of multidisciplinary and multi-stakeholder healthcare systems on patient-reported experience and outcomes for the programming and monitoring of brain and neurodegenerative diseases in Europe and beyond. The multiple sclerosis (MS) case study presented in this paper highlights the role of patient-generated data as indicators of the impact of value-based healthcare (VBHC) for all the different neurological diseases whose prodromal symptoms are the first signs of disease progression and therefore instrumental markers for preventive treatments to preserve brain health. A holistic approach to the treatment of MS plays a crucial role in the inclusion and scientific meaning of the patient's perspective in terms of patient-reported dimension and patient-generated health data (PGHD).

摘要

通过欧洲夏科基金会发起的多发性硬化症护理单元倡议的案例研究,我们讨论了评估多学科、多利益相关者医疗保健系统对患者报告的体验和结果的影响的必要性,以便在欧洲及其他地区对脑部和神经退行性疾病进行规划和监测。本文中呈现的多发性硬化症(MS)案例研究突出了患者生成的数据作为基于价值的医疗保健(VBHC)影响指标的作用,这些数据适用于所有不同的神经系统疾病,其前驱症状是疾病进展的首要迹象,因此是预防治疗以保护脑部健康的重要标志。在患者报告维度和患者生成的健康数据(PGHD)方面,采用整体方法治疗MS对于纳入患者视角及其科学意义起着至关重要的作用。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/296a/11906951/e57a6e6e69b1/40120_2024_706_Fig1_HTML.jpg

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