Tea, talk and technology: patient and public involvement to improve connected health 'wearables' research in dementia.
Tea, talk and technology: patient and public involvement to improve connected health 'wearables' research in dementia.
复制标题
茶、谈话和技术：患者和公众参与改善痴呆症的互联健康“可穿戴设备”研究。
DOI：
10.1186/s40900-017-0063-1
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发表时间：
2017
影响因子：
--
通讯作者：
Ainsworth J
中科院分区：
文献类型：
--
作者：
Hassan L;Swarbrick C;Sanders C;Parker A;Machin M;Tully MP;Ainsworth J
有越来越多的移动的手机、手表和电子设备可以佩戴在身上，以跟踪健康和福祉的各个方面，如每日步数、睡眠和锻炼。痴呆症研究人员认为，这些设备可能会被用作未来研究项目的一部分，例如帮助发现可能预示痴呆症早期症状的日常活动变化。我们询问了一系列老年人，包括痴呆症患者及其照顾者，参与互动讨论，讨论未来的参与者如何使用这些设备作为研究项目的一部分。我们还邀请志愿者借用一系列设备在家中进行测试，让他们进一步了解。讨论表明，人们普遍支持这种类型的研究，只要他们给予知情同意，并且设备谨慎，舒适和易于使用。他们还重视技术支持和对研究进展的定期反馈，以鼓励持续参与。这些发现被用于为研究人员开发一系列设备，包括计算机软件和书面指导，以帮助计划，设计和支持研究。我们的工作表明，如果有合适的机会，受痴呆症影响的人可以提供有价值的见解，可以提高未来研究的设计，交付和质量。 越来越多的研究人员认识到智能手机和智能手表等互联健康设备的潜力，可以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手段来收集、整理和链接这些设备生成的数据，从而加速痴呆症领域的此类研究。我们的目标是让公众参与讨论不同器械和研究设计的可接受性和可行性，为器械库、软件平台和书面指南的开发提供信息，以支持未来的研究。 方法30多人参加了一系列互动研讨会，在大曼彻斯特下降的会议和会议。这包括患有痴呆症和认知障碍的人，照顾者和没有记忆问题的人。讨论针对不同的受众进行了调整，重点是一系列不同可穿戴设备和研究设计的可行性和可接受性。我们还邀请志愿者借用一台设备在家中进行测试，从而从与设备的实际互动中获得进一步的见解。 结果讨论显示，人们原则上支持相关的健康痴呆症研究，前提是他们给予知情同意，并且设备谨慎，舒适和易于使用。此外，他们建议提供技术支持和定期反馈研究进展，以鼓励持续参与。 结论通过使用一系列基于讨论的实践活动，我们发现让痴呆症患者参与并利用他们的见解来塑造软件平台和设备池的开发是可行的，以支持未来的互联健康痴呆症研究。我们建议未来计划此类研究的研究人员充分注意设计合适的参与者信息，技术支持和提供研究进展更新的机制，以支持参与者的持续参与。
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. Background 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. Methods 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. Results 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. Conclusion 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.