People with complex care needs, such as those approaching the end of life or with high levels of dependency due to multiple diseases, have a wide range of support requirements, from the need to co-ordinate inputs from multiple agencies through to symptom tracking and timely care intervention as well as a need, wherever possible, to be able to control or influence their own care agenda. Digital tools have the potential to provide significant support to such individuals.
As part of an SBRI funded project undertaken in partnership with the Sue Ryder charity, people who were receiving specialist palliative care support were invited to contribute to the development of new digital services within VitruCare that could address these needs. Following initial focus group and 1:1 work, digital services were developed which allow patients to make carers aware of their biomedical and psychosocial information in near real time, to facilitate the co-ordination of care inputs by sharing information with professional lay and family carers and to provide both patients and their lay carers with relevant information support.
In initial testing, patients were able to use either their own internet connected device or a tablet computer made available to them to access these services through the VitruCare platform. User feedback was key to the subsequent evolution of the approach in order to optimise both functionality and usability. Features such as the provision of multimedia content to help people understand how they could best manage particular symptoms, the ability to complete and share a reflective diary and the visibility to all carers of real time symptom scores were all highly valued by patients, healthcare staff and family members. Analysis of aspects of the work will be presented at an American scientific meeting in July. A number of patients commented on the value of different aspects of the approach:
“I don’t have to continually mull things over; when I worry my problems seem to get bigger and more complicated. I never slept before I used VitruCare, now I can record how I feel, put it [my computer] down, and have a much better chance of getting back to sleep.”
“I have a voice, this is one way I can express my choices”.
“You know, some of the things I have written on VitruCare I have never told anyone before, mostly because nobody asks. Doctors and Consultants don’t realise how draining it is to keep on repeating my story. I feel tired easily, I forget, I simply don’t have the energy.”
“I forget what has happened in the past, even if it was yesterday. I do tend to recall the bad things, so this might help me to see the good things that have happened too.”
And for a relative: “being able to keep an eye on things at a distance [is] really useful. I struggle more than my Sister because I’m a nurse, everyone expects me to know what’s going on. I don’t see Mum often; that makes it difficult.”
Specific digital services for people with complex care needs are now available within VitruCare.