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Tea talk and technology: patient and public involvement to improve connected health ‘wearables’ research in dementia

机译:茶谈话和技术:耐心和公众参与以改善痴呆症中与健康相关的可穿戴设备的研究

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摘要

Plain English summaryThere are a growing number of mobile phones, watches and electronic devices which can be worn on the body to track aspects of health and well-being, such as daily steps, sleep and exercise. Dementia researchers think that these devices could potentially be used as part of future research projects, for example to help spot changes in daily activity that may signal the early symptoms of dementia. We asked a range of older people, including people living with dementia and their carers, to participate in interactive discussions about how future participants might find using these devices as part of research projects. We also invited volunteers to borrow a range of devices to test at home, giving them further insights. Discussions revealed that people were generally supportive of this type of research, provided they gave informed consent and that devices were discreet, comfortable and easy to use. They also valued technical support and regular feedback on study progress to encourage ongoing participation. These findings were used to develop a pool of devices for researchers, with computer software and written guidance to help plan, design and support studies. Our work shows that when given the right opportunities, people who are affected by dementia can provide valuable insights that can enhance the design, delivery and quality of future research.
机译:简单的英语摘要越来越多的手机,手表和电子设备可以戴在身上,以追踪健康和福祉,例如每天的脚步,睡眠和运动。痴呆症研究人员认为,这些设备有可能被用作未来研究项目的一部分,例如,帮助发现可能表明痴呆症早期症状的日常活动变化。我们邀请了包括老年痴呆症患者及其护理人员在内的一系列老年人参加有关未来参与者如何将这些设备用作研究项目的互动讨论。我们还邀请志愿者借用各种设备在家进行测试,从而为他们提供更多见解。讨论表明,只要得到知情同意并且设备谨慎,舒适且易于使用,人们通常会支持这种类型的研究。他们还重视技术支持和对研究进展的定期反馈,以鼓励持续的参与。这些发现被用于为研究人员开发一系列设备,并使用计算机软件和书面指导来帮助计划,设计和支持研究。我们的工作表明,只要有适当的机会,痴呆症患者可以提供有价值的见解,从而可以提高未来研究的设计,交付和质量。

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