Technological potential for future CPC

As part of our wider conversation to inform the development of our new strategy we will be publishing a series of blogs reflecting on what great children’s palliative care should look like in 2028, what needs to happen to get there and what Together for Short Lives’ role could be in achieving that. 

Today we hear from Andrew W Lewis, Research Associate, University of York, who explores the technological and digital opportunities for enhancing children’s palliative care in the future. 

The potential of technology in improving patient healthcare
I doubt many people who know me will be surprised to learn that I believe the future of children’s palliative care should involve emerging technologies to improve wellbeing. The allure of technological solutions in healthcare is understandable – and the goal of deploying applications and sensors to improve the wellbeing of patients and carers while keeping healthcare professionals informed is a laudable suggestion. The NHS Five Year Forward View places a heavy emphasis on digital inclusion and technology for patients, NHS employees, and the wider healthcare community including carers.

Technology as a tool for support, feedback and monitoring healthcare
At the moment, even those patients and carers dealing with complex needs are likely to spend less than 1% of their time in contact with health professionals. There is a clear opportunity for technology to provide effective monitoring and support, enhancing the data available to the clinician, and providing meaningful biofeedback to patients and carers. In the near future, the appropriate application of existing sensor technologies (like those found in Fitbit devices, other wearables, or smartphones) may be able provide solutions for remote, continuous monitoring of a patient’s condition. Artificial intelligence could be used to find patterns and alert carers and medical professionals to potential problems 24 hours a day. Better methods of telepresence and reporting might be used provide to faster pathways for consultation that benefit both patients and healthcare professionals. 

Tailored technology
However, technology is not a magic bullet for palliative care. For technological solutions to succeed, patients, carers, and healthcare professionals must be able to use them effectively, trust the opportunities for information communication methods that they afford, and understand the significance of the data that they collect. The future is not necessarily built on more powerful technology, but on technology that is tailored to meet the needs of the different users who will access it. This concept of tailoring is not new – from an application development perspective, user centred design techniques (UCD) can be used to ensure that technological solutions will meet the needs of their target audience. These design techniques involve all stakeholders, and need to be applied sympathetically to accommodate the needs of users with motor or cognitive deficits.

Developing pathways to connect experts in these UCD techniques with stakeholders would have a strong, positive impact on the development of effective applications. UCD is an extension of patient based care, analogous with the specialist teams who individualize assistive technologies. Beyond application design, the need to develop individualized pathways for communication and data sharing is a key ethical issue that must be dealt with. What level of sensor information should applications share with different stakeholders? Who initiates contact between stakeholders? Do carers and medical professionals both need the same level of feedback and access to information? 

Together for Short Lives as data-brokers?
Could it be that part of Together for Short Lives’ role in the future is as a facilitator between stakeholders, acting as data-brokers for disparate technologies, managing communications and bringing external skill sets into play as new challenges arise?

Andrew W Lewis
Research Associate, University of York


What do you think? 
Tell us what you think of this vision for Children’s Palliative Care by posting a comment below. You can share more detailed comments by completing this short survey. You can also submit your own blog to support this series by emailing emma.dixon@togetherforshortlives.org.uk

We are keen to hear from as many people as possible, so do share this blog with your stakeholders and networks. You can also engage with the conversation on Twitter, using the hashtag #forthe49000

Add a comment

Your email address will not appear on the site
(Tick to hide your name when this comment appears on the site)
Please wait...