The Value of Including People with Dementia in the Co-Design of Personalized eHealth Technologies
The Value of Including People with Dementia in the Co-Design of Personalized eHealth Technologies
复制标题
DOI：
10.1159/000497804
复制
发表时间：
2019-01-01
影响因子：
2.4
通讯作者：
Paggetti, Cristiano
中科院分区：
文献类型：
--
作者：
Leorin, Cristian;Stella, Eloisa;Paggetti, Cristiano
背景：在本文中，我们讨论了在为痴呆症患者设计和开发电子健康和移动健康解决方案的过程中，从以用户为中心转向共同创造方法的好处和影响。为此，我们举例说明了2018年6月在意大利阿蒂米诺举行的“提醒欧盟项目互联健康暑期学校”实施的参与式设计经验的案例研究。目标：该倡议旨在达到两个目标：(1)帮助各个领域（工程、计算机、心理学、护理和痴呆症护理）的研究人员更深入地了解痴呆症患者如何期望得到电子健康和移动健康技术的支持和/或支持；(2)防止人们把注意力集中在痴呆症特征的缺陷上，而忽略了将痴呆症患者视为一个完整的人，努力维持尽可能充实的生活。方法：互联健康暑期学校是一个年度多学科培训项目，与欧盟项目合作组织，专为对开发新的电子健康和移动健康服务和应用程序感兴趣的早期研究人员设计。在2018年的项目版本中，提醒终端用户合作伙伴诺维尼奥邀请了爱尔兰痴呆症工作组的两名成员发表主题演讲，并参与了参与式研讨会，以促进基于他们具体的现实生活需求、价值观和期望的数字技术应用程序的创建。他们作为参与者和专家的参与旨在向早期研究人员传达一个明确的信息：电子健康和移动健康解决方案的真正个性化方法只能来自对人们对其生活经历的主观描述的高度反思和沉浸式欣赏。结果/结论：互联健康暑期学校的早期研究人员基于他们与两位痴呆症专家的讨论和共同创造活动，开发了6个应用程序模型。对这一经验的反思突出了在与痴呆症患者进行电子健康和移动健康研究、共同设计和开发时需要考虑的一些重要问题。设计研究从以用户为中心的方法向共同设计的演变，应该为开发既不会消除也不会加剧耻辱的技术铺平道路，而是为痴呆症诊断后的生活提供可靠的支持，使其尽可能积极和有意义。为此，全球顶级痴呆症患者组织国际痴呆症联盟（dementia Alliance International）的座右铭说明了一切：看的是人，而不是痴呆症。
Background: In this article, we discuss the benefits and implications of the shift from a user-centered to a co-creation approach in the processes of designing and developing eHealth and mHealth solutions for people with dementia. To this end, we illustrate the case study of a participatory design experience, implemented at the REMIND EU Project, Connected Health Summer School, which took place in June 2018 at Artimino (Italy). Objectives: The initiative was intended to reach two objectives: (1) help researchers specializing in a variety of fields (engineering, computing, psychology, nursing, and dementia care) develop a deeper understanding of how individuals living with dementia expect to be supported and/or enabled by eHealth and mHealth technologies and (2) prevent the tendency to focus on the impairments that characterize dementia at the expense of seeing the individual living with this condition as a whole person, striving to maintain a life that is as fulfilling as possible. Method: The Connected Health Summer School is an annual multidisciplinary training program, organized in collaboration with the REMIND EU Project, designed for early-stage researchers interested in the development of new eHealth and mHealth services and apps. For the 2018 program edition, REMIND end user partner Novilunio invited two members of the Irish Dementia Working Group to deliver keynote lectures, and engage in participatory workshops to facilitate the creation of digital technology applications based on their specific real-life needs, values, and expectations. Their involvement as participants and experts was aimed to give a clear message to early-stage researchers: a true personalized approach to eHealth and mHealth solutions can only emerge from a highly reflective and immersive appreciation of people's subjective accounts of their lived experience. Results/Conclusions: The Connected Health Summer School early-stage researchers developed 6 app mock-ups based on their discussions and co-creation activities with the two experts with dementia. The reflections on this experience highlight a number of important issues that demand consideration when undertaking eHealth and mHealth research, co-design, and development with and for people with dementia. The evolution in design research from a user-centered approach to co-designing should pave the way to the development of technologies that neither disempower nor reinforce stigma, but instead provide a reliable support to living a life as active and meaningful as possible after a diagnosis of dementia. To this end, the motto of the peak global organization of people with dementia, Dementia Alliance International, says it all: See the person and not the dementia.