Patient-Held Digital Passport for Home Mechanical Ventilation

近年来，接受家庭机械通气（HMV）的成年人数量显著增加。HMV患者是脆弱的，夹在家里和医院之间。关于其管理的关键信息被保存在医院，社区，卫生和社会护理的多个机构的筒仓中。依赖HMV的人需要这些机构之间的合作和良好沟通，以确保他们在家中的安全并避免再次入院。如果他们被送往医院，他们面临着医院获得性感染的风险，而且，由于他们通常需要在高度依赖或重症监护床上得到照顾，这对这一稀缺资源造成了额外的压力。获得最新的临床信息在家中管理恶化方面发挥着重要作用。社区和医院工作人员都可以实时访问的电子患者记录提供了一个沟通平台，分享专业知识，并使患者和护理人员能够在家中寻求有关干预措施的建议，以避免升级和转移到医院。在COVID-19大流行期间，家庭护理人员短缺意味着HMV患者需要由不熟悉其个人护理计划的机构工作人员管理。患者或家属负责不同医疗保健人员之间的临床交接。查看患者持有的电子记录的许可可以根据患者或其主要照顾者的决定在需要知道的基础上授予。数字护照是创新的，因为它在患者和/或其主要照顾者的控制下保存关键的健康信息。它将作为他们个人HMV和护理计划细节的精益记录。预期的好处是改善结果，避免再入院，并通过解决实践中不必要的变化来实现更有效的护理。通过与其他系统的集成，可以实现更长期的影响。数字护照可以与自动化系统的输出相关联，以开发人工智能算法，指导HMV管理的变化。在为现实世界的问题开发数字解决方案时，重要的是要获得尽可能多的反馈，以确保我们为患者，家庭成员，专业护理人员和临床医生。在我们的项目中，我们确定了一组来自各种背景的感兴趣的个人，他们愿意测试护照并提供我们提供宝贵的意见及建议，以供改善。该小组包括来自英国各地的临床医生（医生、护士和专职医疗人员）、有复杂需求的儿童的父母以及第三部门组织（儿童临终关怀和慈善机构）。影响资金的延长将有助于我们有更长的测试时间，特别是对于那些忙碌应对冬季压力和第二波新冠肺炎疫情的临床医生。它还将允许我们开发一个应用程序界面，用户告诉我们这将有助于移动的工作和通信，并就如何呈现症状跟踪数据进行咨询，使其最有用。在延期期间，我们将招聘一名IG专家，以确保我们进行全面的数据保护影响评估

The number of adults on home mechanical ventilation (HMV) has significantly increased in recent years. HMV patients are vulnerable, caught between home and hospital. Critical information on their management is held in silos across multiple agencies in hospital, community, health and social care.A person dependent upon HMV needs collaboration and good communication between these agencies to keep them safe at home and avoid hospital readmission. If they are admitted to hospital they face exposure to hospital acquired infection, and, as they usually need to be cared for in a high dependency or intensive care bed, this creates additional pressure on this scarce resource.Access to up to date clinical information plays an important role in managing deterioration at home. An electronic patient-held record that can be accessed in real-time by both community and hospital staff provides a platform for communication, sharing of expertise and the ability for patients and carers to seek advice on interventions at home that could avoid escalation and transfer to hospital. It provides a platform for remote or 'virtual' consultations with specialist services.During the COVID-19 pandemic a shortage of home care workers has meant that HMV patients need to be managed by agency staff who are not familiar with their individual care plans. Patients or family members become responsible for the clinical handover between different health and care staff. Permission to view the patient-held electronic record can be granted on a need to know basis, as decided by the patient or their primary carer.The digital passport is innovative because it holds key health information under the control of the patient and/or their primary carer at home. It will serve as a lean record of their individual HMV and care plan details. The benefits are anticipated to be improved outcomes, avoidance of hospital readmissions and more effective care by addressing unwarranted variation in practice.Longer term impacts could be achieved through integration with other systems. The digital passport could be linked to outputs from ventilators to develop AI enabled algorithms that will guide changes in HMV management.When developing a digital solution for real-world problems it is important to get as much feedback as possible to make sure we develop the best possible solution for patients, family members, professional caregivers and clinicians.During our project we identified a group of interested individuals from a wide variety of backgrounds who have been willing to test the passport and give us valuable feedback and suggestions for improvement. The group includes clinicians (doctors, nurses and allied health professionals), parents of children with complex needs, and third sector organisations (children's hospice and charities) from across the UK.The extension for impact funding will help us to have a longer period of testing, especially for clinicians who are busy with winter pressures and the second wave of Covid-19. It will also allow us to develop an App interface, which users have told us would help with mobile working and communication, and to consult on ways to present the symptom tracker data to make it most useful. During the extension we shall recruit an IG specialist to ensure that we have a comprehensive data protection impact assessment