Karni Liran, Jusufi Ilir, Nyholm Dag, Klein Gunnar Oskar, Memedi Mevludin
Centre for Empirical Research on Information Systems, Örebro University School of Business, Örebro, Sweden.
Department of Computer Science and Media Technology, Linnaeus University, Växjö, Sweden.
JMIR Form Res. 2022 Jun 9;6(6):e31485. doi: 10.2196/31485.
Parkinson disease (PD) is a chronic degenerative disorder that causes progressive neurological deterioration with profound effects on the affected individual's quality of life. Therefore, there is an urgent need to improve patient empowerment and clinical decision support in PD care. Home-based disease monitoring is an emerging information technology with the potential to transform the care of patients with chronic illnesses. Its acceptance and role in PD care need to be elucidated both among patients and caregivers.
Our main objective was to develop a novel home-based monitoring system (named EMPARK) with patient and clinician interface to improve patient empowerment and clinical care in PD.
We used elements of design science research and user-centered design for requirement elicitation and subsequent information and communications technology (ICT) development. Functionalities of the interfaces were the subject of user-centric multistep evaluation complemented by semantic analysis of the recorded end-user reactions. The ICT structure of EMPARK was evaluated using the ICT for patient empowerment model.
Software and hardware system architecture for the collection and calculation of relevant parameters of disease management via home monitoring were established. Here, we describe the patient interface and the functional characteristics and evaluation of a novel clinician interface. In accordance with our previous findings with regard to the patient interface, our current results indicate an overall high utility and user acceptance of the clinician interface. Special characteristics of EMPARK in key areas of interest emerged from end-user evaluations, with clear potential for future system development and deployment in daily clinical practice. Evaluation through the principles of ICT for patient empowerment model, along with prior findings from patient interface evaluation, suggests that EMPARK has the potential to empower patients with PD.
The EMPARK system is a novel home monitoring system for providing patients with PD and the care team with feedback on longitudinal disease activities. User-centric development and evaluation of the system indicated high user acceptance and usability. The EMPARK infrastructure would empower patients and could be used for future applications in daily care and research.
帕金森病（PD）是一种慢性退行性疾病，会导致进行性神经功能恶化，对患者的生活质量产生深远影响。因此，迫切需要在帕金森病护理中增强患者自主权并改善临床决策支持。居家疾病监测是一种新兴的信息技术，有可能改变慢性病患者的护理方式。需要在患者和护理人员中阐明其在帕金森病护理中的接受度和作用。
我们的主要目标是开发一种新型的居家监测系统（名为EMPARK），该系统具有患者和临床医生界面，以增强帕金森病患者的自主权并改善临床护理。
我们使用设计科学研究和以用户为中心的设计元素来进行需求获取以及后续的信息通信技术（ICT）开发。界面的功能是以用户为中心的多步骤评估的主题，并辅以对记录的最终用户反应的语义分析。使用ICT增强患者自主权模型对EMPARK的ICT结构进行评估。
建立了通过居家监测收集和计算疾病管理相关参数的软件和硬件系统架构。在此，我们描述了患者界面以及新型临床医生界面的功能特征和评估。根据我们之前关于患者界面的研究结果，我们目前的结果表明临床医生界面总体实用性高且用户接受度高。最终用户评估揭示了EMPARK在关键关注领域的特殊特征，具有未来在日常临床实践中系统开发和部署的明显潜力。通过ICT增强患者自主权模型的原则进行评估，以及患者界面评估的先前结果表明，EMPARK有潜力增强帕金森病患者的自主权。
EMPARK系统是一种新型的居家监测系统，可为帕金森病患者和护理团队提供关于疾病纵向活动的反馈。以用户为中心的系统开发和评估表明用户接受度高且可用性强。EMPARK基础设施将增强患者自主权，并可用于未来的日常护理和研究应用。
