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利用移动健康技术实施以患者为中心的帕金森病数字结局测量的路线图。

A roadmap for implementation of patient-centered digital outcome measures in Parkinson's disease obtained using mobile health technologies.

机构信息

James J. and Joan A. Gardner Family Center for Parkinson's Disease and Movement Disorders, University of Cincinnati, Cincinnati, Ohio, USA.

Center for the Study of Movement, Cognition, and Mobility, Department of Neurology, Tel Aviv Sourasky Medical Center, Tel Aviv, Israel.

出版信息

Mov Disord. 2019 May;34(5):657-663. doi: 10.1002/mds.27671. Epub 2019 Mar 22.

Abstract

Obtaining reliable longitudinal information about everyday functioning from individuals with Parkinson's disease (PD) in natural environments is critical for clinical care and research. Despite advances in mobile health technologies, the implementation of digital outcome measures is hindered by a lack of consensus on the type and scope of measures, the most appropriate approach for data capture (eg, in clinic or at home), and the extraction of timely information that meets the needs of patients, clinicians, caregivers, and health care regulators. The Movement Disorder Society Task Force on Technology proposes the following objectives to facilitate the adoption of mobile health technologies: (1) identification of patient-centered and clinically relevant digital outcomes; (2) selection criteria for device combinations that offer an acceptable benefit-to-burden ratio to patients and that deliver reliable, clinically relevant insights; (3) development of an accessible, scalable, and secure platform for data integration and data analytics; and (4) agreement on a pathway for approval by regulators, adoption into e-health systems and implementation by health care organizations. We have developed a tentative roadmap that addresses these needs by providing the following deliverables: (1) results and interpretation of an online survey to define patient-relevant endpoints, (2) agreement on the selection criteria for use of device combinations, (3) an example of an open-source platform for integrating mobile health technology output, and (4) recommendations for assessing readiness for deployment of promising devices and algorithms suitable for regulatory approval. This concrete implementation guidance, harmonizing the collaborative endeavor among stakeholders, can improve assessments of individuals with PD, tailor symptomatic therapy, and enhance health care outcomes. © 2019 International Parkinson and Movement Disorder Society.

摘要

从患有帕金森病 (PD) 的个体的自然环境中获得可靠的日常功能纵向信息对于临床护理和研究至关重要。尽管移动医疗技术取得了进步,但数字结果测量的实施受到缺乏共识的阻碍,包括措施的类型和范围、数据采集最合适的方法(例如在诊所或家中),以及提取及时满足患者、临床医生、护理人员和医疗保健监管机构需求的信息。运动障碍学会技术工作组提出了以下目标,以促进移动医疗技术的采用:(1)确定以患者为中心和具有临床相关性的数字结果;(2)为设备组合选择标准,为患者提供可接受的效益-负担比,并提供可靠的、具有临床相关性的见解;(3)开发一个可访问、可扩展和安全的平台,用于数据集成和数据分析;(4)就监管机构批准、电子健康系统采用和医疗机构实施的途径达成一致。我们制定了一份暂定路线图,通过提供以下交付成果来满足这些需求:(1)在线调查的结果和解释,以定义与患者相关的终点,(2)关于使用设备组合的选择标准的协议,(3)用于集成移动医疗技术输出的开源平台示例,以及(4)评估有前途的设备和适合监管批准的算法的部署准备情况的建议。这种具体的实施指导,协调利益相关者之间的协作努力,可以改善对帕金森病患者的评估,定制对症治疗,并改善医疗保健结果。©2019 国际帕金森病和运动障碍学会。

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