A roadmap for implementation of patient-centered digital outcome measures in Parkinson's disease obtained using mobile health technologies
A roadmap for implementation of patient-centered digital outcome measures in Parkinson's disease obtained using mobile health technologies
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DOI：
10.1002/mds.27671
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发表时间：
2019-05-01
影响因子：
8.6
通讯作者：
Maetzler, Walter
中科院分区：
文献类型：
--
作者：
Espay, Alberto J.;Hausdorff, Jeffrey M.;Maetzler, Walter
从自然环境中帕金森病（PD）患者的日常功能中获得可靠的纵向信息对于临床护理和研究至关重要。尽管移动的卫生技术取得了进步，但数字结局指标的实施受到以下因素的阻碍：缺乏对指标类型和范围的共识、最合适的数据采集方法（例如，在诊所或家中）以及及时提取满足患者、临床医生、护理人员和医疗保健监管机构需求的信息。运动障碍协会技术工作组提出了以下目标，以促进移动的医疗技术的采用：（1）识别以患者为中心的临床相关数字结局;（2）为患者提供可接受的受益负担比并提供可靠的临床相关见解的设备组合的选择标准;（3）开发一个可访问、可扩展和安全的数据集成和数据分析平台;（4）就监管机构批准、电子医疗系统采用和医疗保健组织实施的途径达成协议。我们已经制定了一个初步的路线图，通过提供以下可交付成果来满足这些需求：（1）定义患者相关终点的在线调查的结果和解释，（2）就使用器械组合的选择标准达成一致，（3）集成移动的医疗技术输出的开源平台示例，以及（4）用于评估部署适用于监管批准的有前景的设备和算法的准备的建议。这种具体的实施指南，协调利益相关者之间的合作奋进，可以改善PD患者的评估，定制对症治疗，并提高医疗保健效果。(c)2019国际帕金森和运动障碍协会
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. (c) 2019 International Parkinson and Movement Disorder Society