多发性硬化症患者数字患者门户数据表

多发性硬化症数字患者门户研究的数据表PDF,涉及患者与医护需求、原型功能及可用性测试计划。

NIAID Data Ecosystem
浏览 13
文本digital technologyeHealthpatient engagementpatient portalsclinical pathwayneurological diseasechronic diseasemultiple sclerosis
Data Sheet 1: A Digital Patient Portal for Patients With Multiple Sclerosis

基本信息

模态
文本
大小
0.000441532 GB
许可
CC BY 4.0
创建/更新时间
2026-10-09
版本
v1

资源简介

多发性硬化症患者数字患者门户数据表

【一句话概览】

本数据集是 figshare 公开的文本数据集,收录 1 个文件、合计 441.53 KB,主题涵盖 digital technology、eHealth、patient engagement、patient portals、clinical pathway,可用于医学自然语言处理(实体识别、信息抽取等),CC BY 4.0 许可开放获取。

【数据集背景】

本数据集源站标题为《Data_Sheet_1_A Digital Patient Portal for Patients With Multiple Sclerosis.PDF》。配套论文《Unmet needs, burden of treatment, and patient engagement in multiple sclerosis: A combined perspective from the MS in the 21st Century Steering Group》发表于 Multiple Sclerosis and Related Disorders(2018),DOI:10.1016/j.msard.2017.11.013。源站首次发布:2020-05-22。

【数据内容】

源站原始描述:Background: Multiple Sclerosis is a chronic inflammatory disease of the central nervous system that requires a complex, differential, and lifelong treatment strategy, which involves high monitoring efforts and the accumulation of numerous medical data. A fast and broad availability of care, as well as patient-relevant data and a stronger integration of patients and participating care providers into the complex treatment process is desirable. The aim of the ERDF-funded project “Integrated Care Po…

【数据结构与技术规格】

文件数 1 个,合计 441.53 KB。Data_Sheet_1_A Digital Patient Portal for Patients With Multiple Sclerosis.PDF:application/pdf,441.53 KB。数据集 DOI:10.3389/fneur.2020.00400.s001。

【主题与分类】

源站学科分类:Neurology and Neuromuscular Diseases、Neurogenetics。主题标签:digital technology、eHealth、patient engagement、patient portals、clinical pathway、neurological disease、chronic disease、multiple sclerosis。

【适用方向】

文本类数据可用于医学自然语言处理,如命名实体识别、信息抽取与文本分类。

【获取与许可】

源站页面:https://frontiersin.figshare.com/articles/dataset/Data_Sheet_1_A_Digital_Patient_Portal_for_Patients_With_Multiple_Sclerosis_PDF/12355742

使用许可:CC BY 4.0(https://creativecommons.org/licenses/by/4.0/)。

规范引用:Voigt, Isabel; Martin, Benedict; Marcel, Susky; Scheplitz, Tim; Frankowitz, Sophie; Kern, Raimar; et al. (2020). Data_Sheet_1_A Digital Patient Portal for Patients With Multiple Sclerosis.PDF. Frontiers. Dataset

【使用注意】

· 源站最后修改于 2023-05-30,引用时请注意版本时效。

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下载信息

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需要注册 Kaggle 账号并登录后下载,适合需要跟踪下载记录和使用 API 的用户。

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当前数据集主要来源为 Kaggle 公开托管,完整影像包建议通过原始链接或 Kaggle API 获取。

使用方式

数据集获取(Figshare)

命令行下载

curl -L -o "Data_Sheet_1_A Digital Patient Portal for Patients With Multiple Sclerosis.PDF" "https://ndownloader.figshare.com/files/22770506"

文件清单

  • Data_Sheet_1_A Digital Patient Portal for Patients With Multiple Sclerosis.PDF(441.53 KB)

文件总体积 441.53 KB(源站 API 实测)。

数据说明

Background: Multiple Sclerosis is a chronic inflammatory disease of the central nervous system that requires a complex, differential, and lifelong treatment strategy, which involves high monitoring efforts and the accumulation of numerous medical data. A fast and broad availability of care, as well as patient-relevant data and a stronger integration of patients and participating care providers into the complex treatment process is desirable. The aim of the ERDF-funded project “Integrated Care Portal Multiple Sclerosis” (IBMS) was to develop a pathway-based care model and a corresponding patient portal for MS patients and health care professionals (HCPs) as a digital tool to deliver the care model.
Methods: The patient portal was created according to a patient-centered design approach which involves both the patients’’ and the professionals’’ view. Buurmann’'s five iterative phases were integrated into a design science research process. A problem analysis focusing on functions and user interfaces was conducted through surveys and workshops with MS patients and HCPs. Based on this, the patient portal was refined and a prototype of the portal was implemented using an agile software development strategy.
Results: HCPs and patients already use digital hardware and are open to new technologies. Nevertheless, they desire improved (digital) communication and coordination between care providers. Both groups require a number of functions for the patient portal, which were implemented in the prototype. Usability tests with patients and HCPs are planned to consider whether the portal is deemed as usable, acceptable as well as functional to prepare for any needed ameliorations.
Discussion: After testing the patient portal for usability, acceptability, and functionality, it will most likely be a useful and high-quality electronic health (eHealth) tool for patient management from day care to telerehabilitation. It implements clinical pathways in a manner which is comprehensible for patients. Future developments of the patient portal modules could include additional diseases, the integration of quality management and privacy management tools, and the use of artificial intelligence

许可

CC BY 4.0

引用

学术使用请引用 DOI 10.3389/fneur.2020.00400.s001(source: https://frontiersin.figshare.com/articles/dataset/Data_Sheet_1_A_Digital_Patient_Portal_for_Patients_With_Multiple_Sclerosis_PDF/12355742)。

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