如何基于云的解决方案转变为囊性纤维化的人的照顾

几年前,在他的第几个星期的医院坐在他们的儿子旁边,大卫和吉尔斯蒂山在圣诞假期留在圣诞假期,有足够的时间担心和思考。

As 12-year-old George lay in an isolation room, receiving antibiotics to treat a bacterial infection related to his cystic fibrosis, a progressive genetic disease that damages the lungs and digestive system, the couple thought about what managing their younger son’s disease involved — the daily regimen of medications and nebulizers, the yearly stints in the hospital, the frequent interruptions to school and work, the dread and worry each time George developed a cough.

大卫和Kirsty积极参与囊性纤维化众慈善机构,跑半马拉松和乘坐100英里的自行车筹集资金和意识。但他们可以做更多吗?作为Microsoft UK的​​域解决方案架构师,David每天都在bet188手机版app利用他的技术技能来获取客户。如何,他想知道,他可以介绍那些能力,并挖掘他的同事的专业知识,以利用技术来提高乔治和其他人患有这种疾病的生活质量吗?

孤独的医院房间中的那些沉思导致了管理囊性纤维化的突破性方法 - 一种称为项目呼吸的解决方案,即寻求将患者提供更大控制的健康,可能会降低耗时和风险的医院访问的需求,以及甚至可以延长生活。

The smartphone-based solution allows people with cystic fibrosis to monitor their health at home with devices that measure key indicators such as lung function, blood oxygen levels and activity. That data is then stored in the cloud and can be accessed by clinicians on a dashboard using权力BI.,微bet188手机版app软的数据可视化平台,寻找趋势并确定患者何时不适。通过跟踪自己的数据,患者可以介绍,潜在的头关,肺部破坏感染。

解决方案是通过一个财团开发的volving Microsoft, the U.K.-based Cystic Fibrosis Trust, the University of Cambridge, Royal Papworth Hospital in Cambridge, Microsoft Research and Magic Bullet, a social enterprise company Kirsty Hill runs whose purpose is to improve quality of life and outcomes for people with CF.

联盟推出了一个研究项目项目呼吸in 2019 to investigate the viability of home monitoring for cystic fibrosis patients. The project was humming along and showing promising results when the coronavirus pandemic hit, bringing the need for remote health monitoring acutely into focus.

卫生当局建议患有囊性纤维化的患者,患者特别容易受到呼吸道感染,在家中孤立。临床诊所被取消在U.K.中,项目呼吸队转向高速装备,使其应用​​程序更广泛地可供使人们突然发现自己试图在家里管理囊性纤维化。

“我们意识到我们坐在这种解决方案上,该解决方案仅限于100人的研究项目,成千上万的人可以从中受益,”Kirsty Hill说。“突然有机会有更大的影响。”

Cystic fibrosis, or CF, causes the body to develop thick mucus that can clog lungs and lead to infections and respiratory failure. Better screening and treatments have greatly improved life expectancy, but the disease requires time-intensive daily regimens and is often unpredictable, causing frequent disruptions in patients’ lives — including routine clinics every four to six weeks that involve a multidisciplinary team of specialists and take the better part of a day.

一个人坐在膝上型计算机的厨房用桌上
John Winn有囊性纤维化,并说项目呼吸“非常靠近我的心脏。”照片由Jonathan Banks。

Microsoft Research in Cambridge和部分呼吸团bet188手机版app队的主要研究员John Winn理解了CF和任何人的负担。温恩有囊性纤维化,当大流行袭击时,他搬出了他和妻子和两个山桥附近的幼儿分享的房子,还有几分钟路程进入房屋出租。

他单独孤立在那里四个月供应食物,所以他没有不必与其他人接触,每天两次在视频聊天中吃两次吃饭。Winn在夏天搬回了他的家人,但准备在学年期间再次孤立,如果需要。

他说,由于Winn的肺功能减少了大约30%的肺功率约为30%,因此他说,Covid-19会对他带来严重的风险。能够在家管理他的健康,避开医院是至关重要的。

“在过去几年中,我们在可用于治疗CF的药物中看到了巨大的一步,但在诊所管理疾病和管理中的实践中的过程并没有在20年内变化,”Winn说。“项目呼吸是关于革命性的。

“我非常非常兴奋。这个项目令人难以置信的靠近我的心。“

处理CF的伴随着Caroline Powell的挑战,这是一位住在剑桥附近的繁忙的老师。她经常肺和胸部问题,每天大约需要80个药丸,并在她的健康中“总是不得不努力”。每次她有医疗预约或需要住院,鲍威尔都会担心谁将为她提供,并为她的学生安排课程。在她的儿子出生差不多一年半前,那些担忧会加剧。

“当我住院时,我不希望他一直来和我一起去医院或远离我,”鲍威尔说。“这是我最大的激励,让一切更加易于管理。”

当鲍威尔在2月下旬在常规诊所访问皇家Papworth医院时呼吸呼吸时,她渴望尝试。她希望这种方法可能让她竭尽所在的住院,并避免她每四周出席的一些诊所。对她的健康有更多的洞察也有吸引力。

一名妇女在操场上玩小孩
项目呼吸有助于Caroline Powell在她的健康中获得更好的见解。照片由Jonathan Banks。

该项目呼吸套件,提供用于学习参与者,包括免费智能手机应用程序,一个用于跟踪活动和睡眠的Fitbit,血液表测量血液中的氧气水平和仪表肺功能的肺功能。该数据自动上传到应用程序,患者还进入自我报告的数据,以咳嗽,以及它们的整体感觉如何。通过在几周内通过应用程序收集的数据,鲍威尔意识到她需要从抗生素课程开始治疗肺部感染。After the pandemic lockdown started in the U.K., she had her first virtual clinic with a CF specialist nurse at Royal Papworth who was able to access her data through the Project Breathe dashboard, which provides graphs and other visual information, and get a clearer picture of her condition.

“我们能够进入很多细节,因为她在那里拥有我的所有信息,她会读过我的数据,”鲍威尔说。“与物理诊所不同,他们只使用从该一项预约中的数据,她能够发现我的症状模式的模式。”

鲍威尔希望该项目呼吸方法能够实现早期的干预措施,可以帮助她离开医院,并尽量减少对她生命的干扰。

“让我对自己的健康有所了解并在为时已晚之前发现这些劣化模式真的很有帮助,”她说。“到目前为止,它真的证明是以这种方式有用的。”

珍妮特艾伦是u.k.的战略创新董事,基于囊性纤维化的信托基于囊性纤维化的信托,它跑了一个早期的研究on the feasibility of home monitoring for CF patients. Led by Andres Floto, a University of Cambridge professor of respiratory biology, in collaboration with Winn, theSmartCareCF研究七个地点注册了148名患者,他每天监测他们的健康六个月。

艾伦认为项目呼吸作为未来的方式,一种赋予CF人们来管理他们的医疗保健和挑战的方法的方法。

“SmartCare CF has shown the power of providing health care data to individuals who understand and know their own condition, and initial data from the Project Breathe pilot has shown that technology can be safely harnessed to disrupt health care models,” she says.

“The idea that you have to go to hospital even when stable to have your chronic condition managed, whatever that condition is, in this day and age shouldn’t be required. There is a definite need for (Project Breathe).”

在几年前与他的儿子和他的儿子在一起之后,大卫山于2017年初返回工作,并举办了一些微软同事,Giri Tharmananthar和Tom Chapman的咖啡,并继承了使用技术创建远程监控系统的想法bet188手机版app对于有CF的人

A woman and man sitting on a backyard swing
Kirsty Hill,Left和David Hill是创建项目呼吸的团队的一部分。照片由Jonathan Banks。

希尔有一个机会与Microsoft的Allen会面,并了解到每10名参加诊所的患bet188手机版app者,八个通常不需要在那里,另外两个需要的医疗注意。他的创建自我监测系统的目标是双重 - 如果它们良好并识别健康状况的拒绝,则帮助患者避免耗时的诊所访问,以便他们可以在早些时候对待。

“It was kind of a light-bulb moment, that if we could do something to solve both of those problems, it would improve quality of life,” says Hill, who lives in Reading, west of London. “We built the solution around solving those two problems.”

Tharmananthar是当时在微软数字潜入的小型创新团队的一部分,这一直潜入数字保健解决方案。bet188手机版appTharmananthar表示,使用技术使患者驱动的医疗保健能够超越传统医疗环境的患者驱动的医疗保健的愿景已经存在了15年或更长时间。希尔的想法似乎是一个有希望的机会。

“戴夫想要为囊性纤维化做的一切是我们一直在谈论的那样的实例,这是一个以患者为中心的平台,允许临床医生访问患者数据,”他说。“医疗保健中的治疗途径是一种概念,但通常是关于这种情况,我们想把患者放在它的中心。”

随着该项目向前迈进的,微软员工来自整个公司的志愿服务,Thabet188手机版apprmananthar表示,由项目呼吸后面的个人故事和有可能产生差异的个人故事。

“It really embodies that thing that Satya (Nadella, Microsoft’s CEO) talks about,” he says. “It’s not about what you do for Microsoft. It’s about the impact you can have in the world with what Microsoft can bring. It really does speak to that.”

通过微软数字,创新英国和囊性纤维化信托的初始资金,由bet188手机版appKirsty Hill领导的小型团队,支持Microsoft员工的支持,并从皇家Papworth医院的医疗保健专业人员和CF患者的投入,开发了项目呼吸应用程序和后面- 安全地在Azure中安全地存储患者数据的解决方案。自完全采用Microsoft技术建立的应用程序和解决方案已被广泛开发,并由Magicbet188手机版app Bullet在U.K的几个卫生组织运营。

在SmartCarecf学习期间,Floto和Winn,博士学位帮助。学生,使用患者数据来开发一种使用机器学习的预测模型来检测可能隐藏在数据中的信号,并且可以指示患者变得不适。该模型现已被测试为当前Papworth目前项目呼吸研究的一部分。

这项研究Floto监督,最初enrolled 95 patients at Royal Papworth and was quickly scaled up after the pandemic hit to include two additional sites in Wales and Scotland, with around 500 patients expected to be enrolled by the end of the year. Plans for the coming year include adding a fourth site in the U.K. and working with Cystic Fibrosis Canada to implement a research study in Toronto.

“Project Breathe is about turning the previous study into a reality, in terms of actually changing clinical practice,” Winn says.

一个男人在建筑入口前面倾斜栏杆
Andres Floto正在领导囊性纤维化患者的家庭监测研究。照片由Jonathan Banks。

研究的第一阶段旨在证明家庭监测安全有效;后期阶段将涉及使用解决方案测试新的新设备和能力,并应用预测模型以确定患者何时生病。Floto说,早期结果表明,该模型可以平均识别患者病症的病症下降,平均每月11天,通常会开始抗生素。这些研究中的几乎所有患者都能够通过使用该应用程序跳过诊所并用临床医生审查他们的数据。

“我们认为项目呼吸可能是实现虚拟诊所的广泛滚动的伟大解决方案,”Floto说。“如果我们能够介入,我们应该能够从长期,持续的损害中保护肺部。”

For Kate Eveling, who enrolled in the study in July 2019, being able to skip clinics has not only reduced the three-hour round trips required to attend them but alleviated her worries about going into hospitals.

“这只是一个可怕的事情。对我来说,它给了我很多焦虑,“她说。“我肯定认为(项目呼吸方法)是CF诊所的未来。这让事情变得更加容易。“

新型冠状病毒已经提出了关于CF患者未来护理标准的新问题 - 是否会在某些时候返回本诊所,更多的依赖远程诊所,或两者的混合。

“Covid-19的影响是,每个人都被迫使用一个完全遥远的模型,以便未知的时间长度,”Kirsty Hill说。“并立即显而易见的是,已经注册了项目呼吸的患者具有巨大的优势,因为医生可以与他们进行数据通知的讨论,而对于其他人,没有数据参考讨论。”

Britain’s National Health Service (NHS) is providing funding to supply spirometers to thousands of cystic fibrosis patients throughout the U.K., giving CF patients at least one of the pieces of equipment needed for the Project Breathe solution. The team hopes to find funding to cover the costs of making the solution’s back-end available to clinics beyond the study, which the NHS currently doesn’t cover. Ultimately, the goal is to enable Project Breathe to collect patient data passively and eliminate the need for self-monitoring, but reaching that point will require additional funding.

与此同时,由于冠状病毒病例再次在英格兰等国家逐步滴答,因此项目呼吸参与者,如Sammie Read,从家中的安全方面欣赏他们的健康。多年来,阅读在医院两周花费大约每三个月治疗抗生素治疗,因为CF引起的感染。她每天服用40多粒,并遵循日常的雾化器,运动和物理治疗。

A woman sits at a table with medical devices
通过在家监测她的健康,Sammie阅读已经能够避免住院和跳过诊所。照片由Jonathan Banks。

About five years ago, Read became so stressed between juggling work and caring for her school-aged son that her health spiraled dangerously downward. On her husband’s urging, she quit her job.

“With CF, it’s quite unpredictable. You can have a perfectly good day and be fine and the next day it’s like bang, you can’t breathe,” says Read, who lives in a rural area near Stowmarket, England. “It’s sort of like you’re just walking on eggshells.”

在皇家Papworth和SmartCarecf学习的参与者的一个长期患者,读到了项目呼吸研究,注册并开始在家里监测她的健康。

通过跟踪她的数据并根据需要进行调整 - 如果她的肺功能下降,在家里开始抗生素时,在感染即将到来的情况下,请在没有住院的情况下开始读取抗生素。即使在冠状病毒停止在诊所,她也能够在用护士审查她的数据后跳过她的一些预定的访问。

这些天,她的儿子走出房子和她的健康更稳定,读书正在考虑回去工作。

“Project Breathe has made a massive impact on my life,” says Read. “It’s definitely made my life easier. You’re in control, rather than CF being in control of you.”

Top image: David Hill, left, looks on while his son George uses a spirometer to gauge his lung function. Photo by Jonathan Banks.