MyLifeHub: An interoperability hub for aggregating lifelogging data from heterogeneous sensors and its applications in ophthalmic care

视力障碍是最令人恐惧的医疗残疾形式之一，它给我们的社会带来了巨大的社会和经济负担。在英国，视障人士的数量接近200万，每年的总成本估计超过130亿GB。值得注意的是，与年龄相关的视力障碍增加已有充分的记录，并将由于当今日益老龄化的人口而不断上升。视力损害严重影响患者的生活质量，严重影响患者的日常生活和社会活动，导致患者死亡、骨折、跌倒、抑郁等情绪困扰的风险显著增加。已经开发了各种用于量化与视力相关的功能损害的响应性仪器。此外，也有公认的通用工具来评估一般健康方面的生活质量。这些工具包含涉及身体、社会和心理各方面的问卷，为建立受影响个人的生活质量状况奠定了基础，生活质量状况的任何变化，例如眼科手术前后身体和社会活动水平的增加或下降，都可以作为治疗结果的重要指标。然而，通过书面问卷进行的生活质量评估有几个显著的缺陷。许多答案往往依赖于参与者在很长一段时间内的记忆；人们可能会以不同的方式解读问题，并有自己的解释；往往无法验证许多回答的真实性。这些限制对测量的可靠性和有效性提出了严重的问题。值得注意的是，物联网(IoT)技术的快速发展使我们有机会通过监控由各种物联网资产(即对象、传感器、移动应用程序、网络对象等)捕获的个人生活日志数据，来构建可靠性和有效性更高的个人QOL简档。在无处不在的网络中实现持续的连接和交互。MyLifeHub就是这样一种尝试，专注于物联网资产的互操作性，旨在为个人提供一个共同的、可互操作的、基于互联网的长期生活方式信息环境。该系统将使用户了解他们的日常活动、饮食、睡眠、情绪、血压、脉搏等，提高对健康的自我意识，并鼓励对生活方式的积极态度。不同用户之间的数据共享也将成为可能，以便进行经验交流，并在用户之间建立医疗保健社交网络。特别是，MyLifeHub将采用新技术，在智能眼镜(如谷歌眼镜)的支持下，同步和长期量化与视觉相关的功能损害，这些智能眼镜提供可穿戴传感器，通过RFID、红外、蓝牙或二维码与环境连接，从而实现对人们视觉行为的持续监测。MyLifeHub将作为一个平台，评估视力障碍对眼科患者生活质量的影响，包括一般健康方面和特定视力方面的影响。这项研究将通过直接接触潜在受益者的方式在野外进行。我们的临床合作伙伴Moorfield眼科医院(MEH)是英国最大的眼科医院，享誉全球。MyLifeHub的结果将由最终用户(即MEH及其患者)进行评估，从而能够评估和预测物联网技术在现实世界中的变革影响。

Visual impairment is one of the most feared forms of medical disability, which imposes a great social and economic burden on our society. In the UK, the number of visually impaired people is almost 2 million, with total annual costs estimated over £13,000 million. Notably, age-related increase of visual impairment has been well-documented and is set to be on constant rise owing to the growing ageing population nowadays. Visual impairment has significant impact on quality of life (QoL), as reduced visual acuity seriously affect patients' daily and social activities, with substantial increase of risk of mortality, fracture and falls, depression and other emotional distress. A variety of responsive instruments for quantifying functional impairment related to vision have been developed. Also, there are well-recognised generic instruments for the assessment of QoL in general health terms. These instruments contain questionnaires referring to a broad range of physical, social and psychological aspects, offering the basis for establishing the QoL profiles of the individuals under concern.Any changes in the QoL profile, for instance, the increase or drop of the level of physical and social activities before and after an eye surgery, can be used as important indicators for the outcome of the treatment. However, QoL assessment through written questionnaires has several significant drawbacks. Many answers often rely on participants' memory over a long period of time; people may read differently into the questions with their own interpretations; often there is no way of validating the truthfulness of many responses. These limitations raise serious questions on the reliability and validity of the measurements. Remarkably, the rapid advance of the Internet of Things (IoT) technology grants us opportunities to build QoL profiles of individuals with increased reliability and validity by monitoring their lifelogging data captured by a variety of IoT assets (namely objects, sensors, mobile apps, web-objects, etc.) with constant connectivity and interaction in a pervasive network. MyLifeHub is such an attempt with focus on the interoperability of the IoT assets, aiming at a common, interoperable and internet-based environment for long-term lifestyle information for individuals. The system will keep users well informed about their daily activities, diet, sleep, mood, blood pressure, pulse, etc., enhancing self-awareness in health and encouraging positive attitudes towards lifestyles. Data sharing among different users will also be enabled to allow for experience exchange and to build healthcare social-networks among users. Especially, MyLifeHub will feature new techniques enabling simultaneously and long-term quantifying the functional impairment related to vision underpinned with smart glasses (e.g. Google-Glass), which provide wearable sensors to connect with the environment through RFID, infrared, Bluetooth or QR code, allowing for a constant monitoring of the behaviours of people's vision. MyLifeHub will be utilized as a platform to assess the impact of visual impairment on the QoL of ophthalmic patients both in general health terms and in vision specific terms. The research will be conducted "in the wild" through direct exposure to potential beneficiaries. Our clinical collaborator, Moorfields Eye Hospital (MEH), is the largest eye hospital in the UK and earns a reputation worldwide. The outcome of MyLifeHub will be evaluated by the end users (namely MEH and its patients), allowing for the assessment and forecast of the transformational impact of the IoT technologies in real world terms.