Telecare in the UK - my summary from the AKTIVE conference

I have just been to the AKTIVE conference in Leeds. It was very insightful since it refreshed my knowledge about Telecare. I have always been careful not to have my research (Teletalker) placed into Telecare since I didn’t want to come directly from the health related angle. When I went to the ISG conference in 2012 in Eindhoven – the message was very clear: the acceptance rate of Telecare was very low, making pilot projects costly and - with a few exception - unsuccessful.

Now 2014 this is still the case, but at least researchers and other (steering parties) involved are coming around to understand that the components to achieve success with Telecare are complex, context dependent, nuanced and subtle. They realized that a truly multidisciplinary approach involving “end users” (patients, health personnel, carers and technicians) is needed to achieve the potential of Telecare.

A bit of back ground to Telecare or Telehealth as it’s also frequently referred to (based on this Eurohealth paper and other sources): 

Since 1998 UK and other European country governments – and later also the EU - have been pushing for ways to introduce technology to assist with the delivery of care. Europe is faced with the first time phenomenon of lots more older people than younger people because of longevity due to healthier living conditions and no wars, combined with a reduction in birth rates. By 2030 about a quarter of the European population will be over 65 years old, leaving Europe with a 'person to care for ratio' (or potential support ratio PSR, Clarkson & Coleman 2013) of 1:4, which has not existed before. Therefore the drive to use technology to assist and manage health care seems to be a logical step, so fewer people can look after more people. Numerous pilot projects have been taking place in the UK and in the EU, all with moderate success. The range of Telecare technologies range from “low tech” such as pill dispensers, to “more service related” such as pendants for fall alarms (if triggered a carer will contact you), to “high tech” devices and integrated systems such as smart houses equipped with sensors and video connectivity. 

The largest technology (and response) provider in the UK and Europe appears to be Tunstall. Difficulties in delivery Telecare successfully lies with several layers such as interoperability of the systems, technological failures, low awareness with professionals and patients, low acceptance rate (stigma), cost and disjointedness of services (Telecare is seen as an ‘bolt-on’ service).

The Technology Strategy Board has commissioned several projects (SALT, MALT, AKTIVE, ATHENE, COMODAL, COBALT), which are due to disseminate their findings in early summer 2014.

For example, COMODAL looked at reaching consumers in the electronic assisted living technology market. Dr Gillian Ward presented a talk about their work at AKTIVE event. They were interested in the 50-70s age group, either as consumer for themselves or for someone for someone they care for. They employed as methods: literature review, market analysis, product reviews, street surveys, industry telephone interview, focus groups and co-creation workshop. From the interviews with consumer and industry they found that there was a large mismatch between expectations on each side. Industry underestimated the concerns consumers have around perceptions of the use of technology. Cost is important but not the most crucial influence in the purchasing decision. People (consumers) were looking for managed solutions, not products. The design of Telecare should address aspirations, not disability.

Other themes of the conference addressed issues around measuring the performance of Telecare  and insight into the patient & carer relationship and the role of Telecare technology in there. The topic of loneliness and the multifold aspects around caring arrangements were brought out in the open. For example a neighbour would not mind being the first point of contact during day time, but not necessarily during night time. Rob Procter and Joe Wherton reviewed people’s adaptions to Telecare devices, which they termed “bricolage”. They called for more “co-production” in the shape of telecare devices i.e. where users can adapt / make the device to their needs. Paul Clitheroe from the MI-Health, Dallas project in Liverpool, suggested not to “talk” about telecare, but to reach people through activities they enjoy and to communicate the message of self-care. In his view, once people took on responsibility for their own health, people will look for solutions offered on the market in order to manage their health.

I thoroughly enjoyed the conference and the people I met. This little summary does not do justice to the full range of great projects and the wealth of knowledge that has been generated through the critical review of Telecare options and impact.

Themes that I felt were missing:

•  The delicate and problematic relationships between (informal) carers and older people in regards to abuse – can Telecare play a role in reducing abuse?
•  The issue of managing unpredictability in the caring circle, it may be that the carer  (the spouse) falls ill too … how quickly can the new carer get introduced to the telecare set-up?
• There was frequently a call to offer more choice to the patient or carer, but I can also see a danger in the “terror of choice”. Particularly when your mind is already occupied with other realizations that you have to come to terms with e.g. cancer, diabetes. In my view it’s not enough to talk about choice, but to consider where it is helpful to offer choice (e.g. it might be useful to offer a fall alarm either as pendant or wrist band) and when to intervene with a set plan based on professional experience.