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Digital innovations that could help transform end of life care

Author: Eleanor McConnell
28 November 2016

Eleanor McConnell from Hospice UK writes about several digital initiatives that could help transform care for patients and families - in the last of our reports from Hospice UK’s annual conference this year.

At Hospice UK’s recent annual conference, two speakers led a session entitled ‘Digital innovations to transform care and spread knowledge to patients, carers and staff’. Attendees heard about new projects that could spell big changes in the way hospices interact with the people they support.

Professor Max Watson, Medical Director at Northern Ireland Hospice, gave attendees at conference an in-depth look at a recent technical innovation that has been used to support doctors and nurses across 16 countries.  Project ECHO (Extension of Community Healthcare Outcomes) is a knowledge-sharing network that uses video conferencing to enable healthcare practitioners to share their knowledge and facilitate high quality care standards in the most remote and hard to reach areas of the country.  With twenty-one networks currently established in Northern Ireland, there is great potential and opportunity for hospices across the UK to access ECHO, which provides an expert curriculum based on the Palliative Care Adult Network Guidelines (PANG) which can support staff to provide specialised end of life care.

ECHO recognises that healthcare is best delivered locally by well-trained and supported staff and uses impact measurement tools to monitor progress and ensure patient and staff needs are being met. The model democratises specialist knowledge by treating patients closer to where they are living, ensuring greater equality of access. It also places a strong emphasis on systems change by giving practitioners the confidence, knowledge and governance required to try new changes and make improvements to care services.

ECHO networks are made up of a central ‘hub’ forming the centre of the network, which connects with various ‘spokes’ at nursing homes, general practice, hospices and hospitals. The curriculum is delivered by the hub, and staff in the spokes can decide on the content, duration and format that they would prefer. The only equipment required to join a network and receive training is a computer with a working microphone, camera and good broadband connections, meaning that the cost for hospices who wish to use the service is minimal.

The introduction of a super-hub in Northern Ireland in 2014 has established an efficient and effective centre for training new ECHO hubs across the UK and Europe, meaning that every hospice could have equal access to specialist training at a minimal cost. ECHO can be joined from any location and at any time. Hospices interested in becoming a spoke or a hub can find out more about the service here.

The second talk of the session was delivered by Hilary Hall, Senior Delivery Manager for Doteveryone, a company that builds prototypes to explore how more people can have equal access to the opportunities provided by the internet. Doteveryone began a project focussing on end of life care, showing that digital technology could improve the experience of older people with life-limiting conditions.

This project spent six months exploring multiple prototypes that could help patients access the support they need. Several models were developed, including a collaborative health information system – an online space accessible by patients, clinicians, physiotherapists and carers- where the patient’s full personal history can be easily collated and digitised. This means that each patient will have up-to-date information capable of listing appointments in a variety of places. The patient is therefore better able to remember how to manage their own care, and carers are able to get a far more accurate picture of which of the patient’s needs are being met by other services, and identify potential gaps in provision before a crisis point is reached.

The system could take a variety of forms, be it in a conventional screen-based app, or even using voice-led technology, similar to Apple’s Siri. This variety recognises that older people may have difficulty accessing certain technologies, and seeks to make the technologies many of us treat as every-day essentials accessible to everyone. Doteveryone uses technology that already exists to build its prototypes, meaning that such a service could be developed very quickly if the hospice or healthcare sectors choose to facilitate it.

Another model used is a community-based entitlement system aimed at making it easier for older people to undertake everyday activities and tasks. This would place people in need of end of life care in a system that lets their community know that they might need special privileges and access. This could be done via digital signals, which might be capable of alerting a bus driver that someone is getting on who might need help or notifying a pharmacy that someone is on their way to collect a prescription. It could also operate via physical signposting, with the use of badges or cards to easily identify particular needs.

The real innovation in the ECHO project and doteveryone’s prototypes is not the development of exciting new technology, but the adaptation of pre-existing technology to meet essential healthcare needs. Both projects offer exciting opportunities for hospices to ensure that the care they provide is person-centred and reaches as many people as possible.

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