Voigt Isabel, Benedict Martin, Susky Marcel, Scheplitz Tim, Frankowitz Sophie, Kern Raimar, Müller Olaf, Schlieter Hannes, Ziemssen Tjalf
Department of Neurology, Center of Clinical Neuroscience, University Hospital Carl Gustav Carus, Technical University of Dresden, Dresden, Germany.
Chair of Wirtschaftsinformatik, Especially Systems Development, Faculty of Business and Economics, Technical University of Dresden, Dresden, Germany.
Front Neurol. 2020 May 22;11:400. doi: 10.3389/fneur.2020.00400. eCollection 2020.
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. 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. 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. 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 to personalize treatment strategies.
多发性硬化症是一种中枢神经系统的慢性炎症性疾病，需要复杂、差异化且终身的治疗策略，这涉及高度的监测工作以及大量医学数据的积累。理想的情况是能快速广泛地提供护理，以及与患者相关的数据，并使患者和参与护理的提供者更强有力地融入复杂的治疗过程。由欧洲区域发展基金资助的项目“多发性硬化症综合护理门户”（IBMS）的目标是为多发性硬化症患者和医疗保健专业人员（HCPs）开发一种基于路径的护理模式以及相应的患者门户，作为实施该护理模式的数字工具。患者门户是根据以患者为中心的设计方法创建的，该方法兼顾了患者和专业人员的观点。布尔曼的五个迭代阶段被整合到一个设计科学研究过程中。通过对多发性硬化症患者和HCPs进行调查和举办研讨会，对功能和用户界面进行了问题分析。在此基础上，对患者门户进行了优化，并采用敏捷软件开发策略实现了门户的原型。HCPs和患者已经在使用数字硬件，并且对新技术持开放态度。然而他们希望护理提供者之间能改善（数字化）沟通与协调。两组人员都对患者门户提出了一些功能需求，这些功能在原型中得以实现。计划对患者和HCPs进行可用性测试，以考量该门户是否被认为可用、可接受以及功能完备，从而为任何必要的改进做好准备。在对患者门户的可用性、可接受性和功能进行测试之后，它很可能会成为一个从日间护理到远程康复的患者管理的有用且高质量的电子健康（eHealth）工具。它以患者能够理解的方式实施临床路径。患者门户模块未来的发展可能包括纳入其他疾病、整合质量管理和隐私管理工具，以及使用人工智能来个性化治疗策略。
