All 10 workshops engaged participants in a lively and creative forum in which they discussed the ethnographic data and generated numerous technology and service design ideas. Analysis revealed four main themes: (a) raising awareness and sharing knowledge; (b) customisation and adaptation; (c) ongoing social support and (d) information sharing and coordination. We consider these in turn below.
Raising awareness and sharing knowledge
The need to increase public awareness about ALTs recurred frequently. Users and their carers were motivated to explore how the technology could support them but felt restricted by lack of information and guidance. Similarly, service providers and industry representatives called for greater efforts to increase public awareness and understanding of ALTs. They identified a need for more training of care staff to improve patient signposting and assistance.
End-user representatives also talked about the value of learning through direct interactions with other people using or supporting the use of ALTs. This was evident during co-design workshops, in which they shared knowledge and strategies related to specific problems. This led them to conclude that social gatherings or ‘forums’ would help them take initiative to resolve problems and innovate solutions:
Word of mouth is the best way, when you’ve met someone, they say there’s this or that. A lot of it is being in the right place at the right time. Finding out little snippets of information, picking people’s brains. [Garry, son and carer for mother, Molly aged 77]
Similarly, service provider and industry workshops identified a need to support ‘shared learning’ across services and sectors about the capabilities and limitations of technology, and workarounds to problems:
Shared learning is needed. With daily living equipment, we’ve been through that over many years, so we know which pieces of equipment work well and we share that as a group. But that hasn’t happened the same way on the technology side. [Service Provider, OT]
For many service providers, their encounters with industry had centred on the promotion or selling of products, rather than mutual learning:
We’d love to speak with industry more. Not from a sales perspective…It’s funny, because if I say, ‘I might want one or two on a trial’, they’re not interested. They only want to know if we want about 300. [Service Provider, OT]
Customisation and adaptation
The ALT users described how they experienced technologies that had not been personalised as disruptive and stressed that, to be acceptable, ALTs must offer sufficient flexibility to fit into everyday life and fluctuations in their capabilities and routines.
The card selection activities provoked discussion among users, who proposed different ways that they would adapt and use the technology. These ideas drew on knowledge of their own capabilities, environments and risks. For example, one user with diabetes was anxious that she would not be able to find her pendant alarm in the dark during the night. Her blood sugar level tended to drop at night, but she often forgot where she put her pendant. She discussed with the workshop group the possibility of mounting a large button by her bedside.
In another example, a participant with visual impairment felt that she would benefit from a series of pull-cord alarms located en route from her bedroom to the bathroom. Her main concern was risk of falling during visits to the bathroom, but (perhaps because of mild cognitive impairment) she rarely remembered to carry her pendant alarm with her at this time. A third telecare user was more concerned about falling outside the home (following a recent fall in a car park), and so wanted her pendant alarm to work outdoors. These examples illustrate how different users proposed different ways to configure and use the same, and most basic, form of telecare—personal trigger alarms. In fact, all three of the configurations proposed by these participants are already possible with existing telecare equipment (wireless large button triggers, pull-cords, mobile telecare with GPS tracking, respectively). However, all three were unaware of the relevant technology and were making do with the standard telecare package that had been supplied to them.
Care professionals whose role was to assess for and implement ALTs discussed the constraints to personalisation. First, they talked about the effortful task of initial assessment, which was considered critical to getting to know the specifics of how the user lives and experiences their illness. Failure to do this effectively could actually worsen, rather than improve, the situation for the older person, and so was seen as an ethical as well as a practical issue:
People think, if you’ve got the technology in, it will at least help. But actually if you don’t get the detail, the crux lies in the details, if you don’t get it right, then it can potentially be detrimental, even small things. [Service provider, OT]
Second, care professionals’ accounts of installing ALTs in users’ homes illustrated that this task requires considerable hands-on, practical reasoning to fit the technology around the individual contexts, material constraints and the particular ends that are to be achieved:
We tend to think ‘I need it quickly’, rather than thinking wider…Sometimes we’ve tried to be really creative. And to be honest, it doesn’t always work, because the kit is designed for a certain function, when you try and adapt it. We have to do it on a trial basis. [Service provider, Telecare Lead]
Care professionals also felt that the importance of material knowledge and practical reasoning was not fully appreciated across the services. Staff often did not have the time or experience to adapt solutions in this way, and patients tended to be passed through distinct care teams, each with specific responsibilities and tasks, along a so-called ‘care pathway’—and installing technology tended to be viewed as a one-off technical procedure in this pathway rather than a more organic customisation process.
Service provider and industry representatives talked about the restricted range of technology options that may be implemented for a particular user due to contractual limits on what could be provided by whom. Service staff talked of being ‘locked in’ to particular suppliers, determined by commissioning decisions:
The equipment was bought by commissioners, non-clinicians. Had there been more engagement with clinicians who had an understanding of the patients who use it, it might be slightly different. [Service Provider, Commissioner]
Technology developers highlighted current technical barriers to customisation. This includes a lack of interoperability across ALT suppliers, which limits the extent to which devices can be combined in accordance with the user’s needs. A second technical constraint related to the safety and reliability of ALTs that were open to ongoing configuration:
I think the issue of bolting on a device that you’ve picked up in a shop, that’s where it becomes quite tricky. Because you’ve got, what we class as a safety critical device. [Industry, Marketing Lead]
Ongoing social support
Participants talked about the role of informal social support (e.g. family, friends) to help introduce ALTs and overcome technical glitches or limitations. Our data showed that users’ informal resources varied greatly. For users who depended solely on professional services, even minor problems (e.g. replacing batteries on a device) could pose significant disruption:
I heard this beep, beep…It wanted a battery, all it needed was a battery. But I didn’t know where the battery was to go…It took them so long to come and change the battery for me....It was about two weeks before Christmas that I told them, and it went through Christmas and then New Year and then it was January before they came. [Elsie, aged 82]
Workshop participants identified a need for service providers to assess the older person’s informal support and align the ALTs deployed with these resources. In addition, they felt, the service would require capacity to respond to diverse (and sometimes ‘minor’) needs when such resources were not available. Service users emphasised that staff should reach out to users to support them with technology and create a sense of familiarity and presence.
An important part of providing this support, end-users felt, was to build positive personal relationships with the ALT user and their carers. They emphasised that regular contact and on-hand support was particularly important at the early stages of using the technology. They felt that this investment of human effort would ultimately lead to more effective solutions:
If you called in perhaps the next day or a couple of days later, had a cup of tea and talked it over, you’d find where the difficulties are…And that second or third visit to see would make all the difference. [Mrs K, aged 80]
Service providers recognised that relationship formation was important for effective ALT implementation and use. Getting to know individuals over time surfaces the subtle, granular information about their life (e.g. illness, events, anxieties) that have a bearing on the appropriateness and use of the technology. Call centre staff were seen to play a particularly important role in this regard through frequent and opportunistic interactions with clients, which helped them interpret and respond to remote monitoring information in context:
We recently had a patient that’s going through a divorce. She’s quite weepy, she’s stressed. So it’s learning that information. We aren’t just looking at the readings and saying, well, that’s high. [Service Provider, Telehealth monitoring operator]
Workshop participants concluded that services should invest time and effort into maintaining frequent contact with clients who needed this, and exploit opportunities for interaction. In practice, such interactions currently occur on an ad hoc basis and are treated as aberrations of usage (e.g. ‘false’ alarms or clients triggering alarms ‘for a chat’). They felt that services should be designed to facilitate informal and interpersonal interaction as a component of routine practice. Additionally, technical subsystems might even be designed to prompt and encourage interpersonal interaction in order to develop a positive personal relationship with the service when desired. Rather than developing technologies to become more ‘independent’ from the care network, design should focus on the social cohesion required to support the older person alongside ALTs:
We have to be aware that we don’t get in the way of social networks…Maybe the answer isn’t to make technology as simple as possible. Maybe the answer is to make it as socially adaptive as possible. [Industry, Business Analyst]
A recurring theme was the need to support knowledge sharing and coordination within and between services, as well as across formal and informal care networks. Service chains—with several people involved in supporting an individual—are complex and tend to lack effective integration. Aspects of the ALT service (e.g. installation, monitoring) are often outsourced to subcontractors, which adds another level of separation.
The workshops suggested that substantial improvements in intra- and inter-agency coordination and information sharing is needed to provide a holistic view of the older person and track changes in circumstances and needs. Participants identified a potential role of ICT to support information sharing and coordinated activity. Their suggestions included features to increase awareness of other care activities, tracking of technical issues and a directory to seek expertise to resolve problems:
Knowing that a district nurse is planning a review, we could slot in a couple of questions, or catch up with that nurse afterwards, or share that information. I just don’t think we do enough. [Service provider, Community Matron]
These suggestions by participants align closely with findings from the computer supported cooperative work (CSCW) literature that social and technical subsystems should be organised to support collaboration through mutual awareness (the sense of what the other collaborators are doing in order to provide a context for your own activity) [
30] and facilitate sharing of both ‘formal’ knowledge (documented and accessible by people within an organisation) and ‘informal’ knowledge (gained through everyday practice that is not documented) [
31].
However, participants also identified that such a platform would need to accommodate multiple actors across the care network. Different people will hold different roles, knowledge and expertise, and so the design would require multiple representations that are attuned to the particular goals and tasks of each member. In addition, they felt that these representations should include means to access day-to-day knowledge and experience within the informal network:
I think if you gave an opportunity to put something on themselves. When you get it in their own words, you get much more of a flavour of how they actually see it. [Service Provider, Community Matron]