背景:由于所谓的“三赢效应”,在神经退行性疾病的医疗保健中引入信息和通信技术(ICT)有利于延迟对机构护理的需求,降低相关的医疗保健成本,减轻护理负担,提高个人的生活质量。然而,用户期望与实际需求之间的不匹配仍然是降低技术解决方案可用性的主要挑战之一。因此,欧洲项目个性化综合护理促进老年人生活质量(PROCare4Life),旨在为参与神经退行性疾病保健的所有各方开发一个基于ICT的平台,采用了以用户为中心的设计方法,所有用户从一开始就参与平台的开发和实施,以将他们的需求和要求集成到拟议的平台中。
目的:本文介绍了对潜在最终用户(患有神经退行性疾病的老年人,看护者,和医疗保健专业人员)以及PROCare4Life平台开发中的其他关键利益相关者。
方法:采用定性和定量混合的研究设计,包括2个基于网络的调查,40次采访,4个工作坊该研究于2020年4月至9月在5个欧洲国家进行:德国,意大利,葡萄牙,罗马尼亚,和西班牙。两种数据类型分别进行分析,然后合并和解释,更优先考虑定性研究。
结果:共招募了217名参与者;其中157名(72.4%)完成了基于网络的调查(n=85,54.1%的患者,n=72,45.9%的护理人员)。60人(27.6%)参与了定性研究(20/60,33%的卫生保健专业人员;5/60,8%的患者;5/60,8%的护理人员;30/60,50%的主要利益相关者).我们确定了3个主要主题(T):(T1)与疾病相关的经历,(T2)关于平台技术的思考,和(T3)期望的性质。不良事件警报,通信工具,提醒,监控是不断需要的功能,而易用性,个性化,和用户友好性被预见为必要的功能。
结论:本文确定了关键的个人,社会,和影响潜在最终用户日常生活的健康因素,并反映他们对拟议的PROCare4Life平台设计的需求和期望。收集的数据对PROCare4Life平台的开发很有用。尽管不同用户组的功能组合和集合对于集成护理平台是典型的,它导致设计师的指数复杂性,开发者,和用户。在这项研究中,相互矛盾的观点和一些担忧表明,ICT集成的护理平台不应该为太多的人承诺太多。相反,选择,焦点,and,有时,限制必需品是必要的。用户和其他利益相关者应参与这些决策。
UNASSIGNED:RR2-10.2196/22463。
BACKGROUND: With what has been known as the \"triple-win effect\", introducing information and communication technologies (ICTs) in the health care of
neurodegenerative diseases is beneficial in delaying the need for institutional care, reducing the associated health care costs, reducing the caregiving burden, and improving individuals\' quality of life. Nevertheless, the mismatch between the users\' expectations and their actual needs remains one of the main challenges that can reduce the usability of technology solutions. Therefore, the European project Personalized Integrated Care Promoting Quality of Life for Older People (PROCare4Life), which aimed to develop an ICT-based platform for all parties involved in the health care of
neurodegenerative diseases, adopted a user-centered design approach, where all users are involved from the inception and throughout the platform development and implementation to integrate their needs and requirements in the proposed platform.
OBJECTIVE: This paper presents the results of a
study on the needs and requirements of the potential end users (older people with
neurodegenerative diseases, caregivers, and health care professionals) and other key stakeholders in the development of the PROCare4Life platform.
METHODS: A mixed qualitative and quantitative
study design was used, including 2 web-based surveys, 40 interviews, and 4 workshops. The study was conducted between April and September 2020 in 5 European countries: Germany, Italy, Portugal, Romania, and Spain. Both data types were analyzed separately and then merged and interpreted, with greater priority placed on qualitative research.
RESULTS: A total of 217 participants were recruited; 157 (72.4%) of them completed the web-based surveys (n=85, 54.1% patients and n=72, 45.9% caregivers), and 60 (27.6%) individuals participated in the qualitative research (20/60, 33% health care professionals; 5/60, 8% patients; 5/60, 8% caregivers; and 30/60, 50% key stakeholders). We identified 3 main themes (T): (T1) experiences associated with illness, (T2) thoughts about the platform technology, and (T3) desired properties. Alerts for adverse events, communication tools, reminders, and monitoring are constantly needed functionalities, whereas ease of use, personalization, and user-friendliness are foreseen as necessary features.
CONCLUSIONS: This paper identified the key personal, social, and health factors that influence the daily lives of the potential end users and reflected on their needs and expectations regarding the design of the proposed PROCare4Life platform. The collected data were useful for the development of the PROCare4Life platform. Although the combination and collection of features for diverse user groups are typical for integrated care platforms, it results in exponential complexity for designers, developers, and users. Contradicting opinions and several concerns in this study demonstrate that an ICT-integrated care platform should not promise too much for too many. Instead, selection, focus, and, sometimes, restriction to essentials are necessary. Users and other stakeholders should be involved in these decisions.
UNASSIGNED: RR2-10.2196/22463.