Leveraging digital phenotyping to monitor and support patients with vision loss beyond the clinic

青光眼是一种慢性进行性眼部疾病，导致不可恢复的视力丧失。年龄是一个主要的风险因素，影响到英国3.3%的70岁以上人群。预计在未来十年，青光眼患者的数量将急剧上升。例如，到2035年，英国75岁以上的人口将达到890万，比2010年增长80%。流行病学模型预测，到2035年，英国青光眼患者数量将增长44%。青光眼病例的增加给医院眼科服务带来了复杂的挑战。国家统计数据表明，眼科一直被认为是NHS最繁忙的门诊服务，2019-2020年英格兰的住院人数超过790万。保护青光眼患者的视觉功能需要一种有针对性的方法，这需要数字创新的支持。如今，技术进步使一些人群可以使用家用或可穿戴设备进行远程监控。由于许多原因，家庭监测是一个有吸引力的前景，特别是如果可以捕获临床有用的数据，以便及早发现疾病进展。这一领域研究的总体重点是创建通常在诊所进行的家庭版本的测试，例如基于笔记本电脑的视野测试。围绕青光眼家庭监测的证据是有希望的，然而这种策略很少能反映青光眼的“现实世界”影响，这种方法的临床实用性仍有待观察。抵消青光眼负担的另一种策略是使用常规收集的患者生成的数据来监测患者的日常活动模式。例如，智能手机设备和可穿戴设备通过为收集有价值的健康信息创造机会，从而实现知情的临床决策和更好的患者结果，从而发挥变革性的力量。数字表型是数字健康领域的一个新兴概念。它被定义为使用个人数字设备对个体水平的人类表型进行实时量化。在这种方法中，患者下载并启动一个智能手机应用程序，该应用程序收集主动数据（例如调查）和被动数据（例如全球定位系统[GPS]数据）。护理提供者可以跟踪参数的变化，以实现监测目的，超越主要的治疗责任，并参与主动、预测和预防行动。迄今为止，数字表型主要应用于精神病学领域，以监测抑郁症状。然而，数字表现型可能是监测视力障碍患者的重要临床应用的来源。数字表型通过利用技术来测量和监测青光眼对现实世界的影响，为创新提供了一条途径。为了促进这种对患者预后评估方式的改变，需要产生证据来确定这种方法的可行性。拟议的项目将是一项可行性和可接受性研究，调查在青光眼护理中使用数字表型的潜力。将使用混合方法方法来帮助澄清哪些参数将对测量有用（例如流动性），以及目标人群对数字表型的接受程度。研究问题将围绕参与者参与数字表型，依从性/依从性，数据的可用性和有用性以及用户体验的定性反馈等方面。

Glaucoma is a chronic progressive ophthalmic disease causing non-recoverable loss of vision. Age is a major risk factor, affecting ~3.3% of those over the age of 70 in the UK. The number of people diagnosed with glaucoma is projected to rise dramatically over the next decade. For example, by 2035 there will be 8.9 million people aged over 75 in the UK, an increase of 80% compared to 2010. Epidemiological modelling predicts the number of people with glaucoma in the UK will grow by 44% by 2035. The rising glaucoma caseload creates a landscape filled with complex challenges for the hospital eye service. The problem is illustrated by national statistics that consistently identify ophthalmology as the busiest outpatient service in the NHS, with over 7.9 million hospital attendances in England in 2019-2020.Preserving visual function in people with glaucoma requires a targeted approach, enabled by digital innovation. Technological advances now allow some populations to be monitored remotely using home-based or wearable equipment. Home monitoring is an attractive prospect for a number of reasons, particularly if clinically useful data can be captured to allow earlier detection of disease progression. The general focus of research in this area has been directed at creating home-based versions of tests that would usually take place in clinic, such as laptop-based visual field testing. Evidence surrounding glaucoma home monitoring is promising, however this strategy does little to reflect the 'real-world' impact of glaucoma, and the clinical practicality of this approach remains to be seen. An alternative strategy for offsetting the glaucoma burden is to monitor patterns in patients' day-to-day activities using routinely gathered patient-generated data. For example, smartphone devices and wearables exert a transformative power by creating opportunity for collection of valuable health information, enabling informed clinical decision-making and better patient outcomes. Digital phenotyping is an emerging concept in the digital health sphere. It is defined as the moment-by-moment quantification of the individual-level human phenotype, using personal digital devices. In this approach, patients download and launch a smartphone application that collects both active data (e.g. surveys) and passive data (e.g. global positioning system [GPS] data). Care providers can track changes in parameters for monitoring purposes, moving beyond predominantly curative responsibilities and engaging in proactive, predictive and preventive action. To date, digital phenotyping has primarily been applied within the psychiatry sector to monitor depressive symptoms. Yet, digital phenotyping could be a source of significant clinical utility for monitoring people with vision impairment.Digital phenotyping offers a route to innovation by leveraging technology to measure and monitor the real-world impact of glaucoma. In order to stimulate this change in how patient outcomes are reviewed, there is a need to generate evidence to determine the viability of this approach. The proposed project will be a feasibility and acceptability study investigating the potential for using digital phenotyping in glaucoma care. A mixed methods approach will be used to help clarify what parameters will be useful to measure (e.g. mobility) and how well digital phenotyping is received by the target population. Research questions will be surrounding aspects such as willingness of participants to engage with digital phenotyping, adherence/compliance, availability and usefulness of the data, and qualitative feedback on user experience.