亨廷顿支持应用程序的开发 (HD-eHelp研究):以人为中心和共同设计的方法
Pearl J C van Lonkhuizen1,2,3, Anne-Wil Heemskerk1,3, Eline Meijer1,2
1Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, Netherlands.
Frontiers in neurology
|July 16, 2024
概括
一个新的亨廷顿病支持应用程序,与患者和合作伙伴共同设计,提高了欧洲亨廷顿病 (HD) 护理的eHealth可访问性. 这种以用户为中心的设计确保了应用程序满足需求,改善生活质量和获得专业服务.
科学领域:
- 数字健康数字健康
- 人与计算机的交互
- 神经学 神经学
背景情况:
- 电子健康为改善整个欧洲亨廷顿病 (HD) 护理的可获得性提供了潜在的解决方案.
- 目前针对亨廷顿病的电子健康研究有限,特别是与亨廷顿病基因扩张载体 (HDGEC) 和他们的合作伙伴的共同设计.
- 需要根据患有HD的个体的具体需求和期望量身定制的电子健康服务.
研究的目的:
- 描述亨廷顿支持应用程序原型的以人为中心的设计过程.
- 评估应用程序原型在最终用户的初始接收和可用性.
- 评估应用程序在改善HDGEC及其合作伙伴的生活质量和获得护理方面的潜力.
主要方法:
- 采用了定性,以人为中心的设计方法.
- 来自欧洲各个国家的潜在最终用户 (HDGEC,合作伙伴,医疗人员) 的采访为设计提供了信息.
- 与用户群进行了共同设计研讨会和随后的评估.
主要成果:
- 亨廷顿支持应用程序原型集中了可靠的信息,新闻和与医疗保健提供者 (HCP) 的直接联系.
- 功能包括在线入场时间和预约安排.
- 原型得到了积极的反,被HDGEC和合作伙伴评为有吸引力,愉快,易于使用和有帮助.
结论:
- 在整个开发过程中涉及最终用户,最终产生了一款医疗保健应用程序,该应用程序满足了HD患者的相关需求.
- 由于以用户为中心的设计,该应用程序具有高采用率和保留率的潜力.
- 亨廷顿支持应用程序为欧洲的 Huntington 病患者提供可靠的信息和专业护理的低门访问.
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