Patient-Held Digital Passport for Home Mechanical Ventilation

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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