Hassan Lamiece, Swarbrick Caroline, Sanders Caroline, Parker Angela, Machin Matt, Tully Mary P, Ainsworth John
Farr Institute of Health Informatics Research, School of Health Sciences, Faculty for Biology, Medicine and Health, The University of Manchester, Oxford Road, Manchester, M13 9PL UK.
NIHR School for Primary Care Research, The University of Manchester, Oxford Road, Manchester, M13 9PL UK.
Res Involv Engagem. 2017 Aug 1;3:12. doi: 10.1186/s40900-017-0063-1. eCollection 2017.
PLAIN ENGLISH SUMMARY: There 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. ABSTRACT: Increasingly, researchers are recognising the potential for connected health devices, including smartphones and smartwatches, to generate high resolution data about patterns of daily activity and health outcomes. One aim of the Dementias Platform UK (DPUK) project is to provide researchers with a secure means to collect, collate and link data generated by such devices, thereby accelerating this type of research in the field of dementia. We aimed to involve members of the public in discussions about the acceptability and feasibility of different devices and research designs to inform the development of a device pool, software platform and written guidance to support future studies. Over 30 people attended a series of interactive workshops, drop-in sessions and meetings in Greater Manchester. This included people living with dementia and cognitive impairments, carers and people without memory problems. Discussions were tailored to suit different audiences and focused on the feasibility and acceptability of a range of different wearable devices and research designs. We also invited volunteers to borrow a device to test at home, enabling further insights from hands-on interactions with devices. Discussions revealed that people were supportive of connected health dementia research in principle, provided they gave informed consent and that devices were discreet, comfortable and easy to use. Moreover, they recommended technical support and regular feedback on study progress to encourage ongoing participation. By using a range of discussion-based and practical activities, we found it was feasible to involve people affected by dementia and use their insights to shape the development of a software platform and device pool to support future connected health dementia research. We recommend that researchers planning such studies in future pay adequate attention to designing suitable participant information, technical support and mechanisms of providing study progress updates to support sustained engagement from participants.
通俗易懂的总结:可穿戴在身上的手机、手表及电子设备数量日益增多,这些设备能够追踪健康和幸福的多个方面,比如每日步数、睡眠及运动情况。痴呆症研究人员认为,这些设备有潜力在未来研究项目中发挥作用,例如帮助发现日常活动中的变化,这些变化可能预示着痴呆症的早期症状。我们邀请了一系列老年人,包括痴呆症患者及其护理人员,参与关于未来参与者如何看待在研究项目中使用这些设备的互动讨论。我们还邀请志愿者借走一系列设备在家中进行测试,以便他们能有更深入的了解。讨论结果显示,只要能获得充分知情同意,且设备不显眼、佩戴舒适且易于使用,人们总体上支持这类研究。他们还重视技术支持以及关于研究进展的定期反馈,以鼓励持续参与。这些研究结果被用于为研究人员开发一批设备,并配备计算机软件和书面指南,以帮助规划、设计和支持相关研究。我们的工作表明,只要给予合适的机会,受痴呆症影响的人群能够提供宝贵的见解,从而提升未来研究的设计、实施和质量。 摘要:研究人员越来越认识到,包括智能手机和智能手表在内的可联网健康设备有潜力生成有关日常活动模式和健康结果的高分辨率数据。英国痴呆症平台(DPUK)项目的一个目标是为研究人员提供一种安全的方式,用以收集、整理和关联此类设备生成的数据,从而加速痴呆症领域的这类研究。我们旨在让公众参与关于不同设备和研究设计的可接受性及可行性的讨论,为开发一个设备库、软件平台和书面指南提供参考,以支持未来的研究。30 多人参加了在大曼彻斯特举行的一系列互动研讨会、临时会议和正式会议。其中包括痴呆症患者、有认知障碍的人、护理人员以及没有记忆问题的人。讨论内容根据不同受众进行了调整,重点关注一系列不同可穿戴设备和研究设计的可行性及可接受性。我们还邀请志愿者借走一台设备在家中进行测试,以便通过与设备的实际操作互动获得更深入的见解。讨论结果显示,只要能获得充分知情同意,且设备不显眼、佩戴舒适且易于使用,人们原则上支持可联网健康痴呆症研究。此外,他们建议提供技术支持以及关于研究进展的定期反馈,以鼓励持续参与。通过开展一系列基于讨论和实践的活动,我们发现让受痴呆症影响的人群参与进来,并利用他们的见解来塑造软件平台和设备库的开发,以支持未来的可联网健康痴呆症研究是可行的。我们建议,未来计划开展此类研究的人员应充分重视设计合适的参与者信息、技术支持以及提供研究进展更新的机制,以支持参与者持续参与。
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