OPENING ADDRESS

1A Critical Space for Thinking About Telecare / Maggie Mort: (Institute for Health Research, Lancaster University, UK)

2The central aim of the Utrecht conference was to create a critical space for participants to think about new care technologies, away from the daily pressures of both home and work. Too many conferences on telecare and telemedicine technologies were sponsored by the industry and were consequently less inquiring and less able to scrutinise difficult issues than they might be. It was hoped that Telecare, Dialogue and Debate would be different.

3Another problem with events held to examine new care technologies1 for older, vulnerable or disabled people was that these were the very groups that invariably found it difficult to participate. It had been decided to hold Telecare, Dialogue and Debate, in the Netherlands. This inevitably created some difficulties, while opening up other opportunities for participation. In an attempt to compensate for this the UK researchers held a prior discussion group in a Disability Resource Centre in the city of Leeds, UK. The questions scheduled for debate in Utrecht were discussed with a group of disabled people who had themselves become experts in using telecare systems and services in their homes. These questions, drawn from the State of the Art document, were deliberately framed so as to invite the participants to reflect on their experience and express their feelings about living with new care technologies.

4It was decided that extracts from this discussion group would be a fitting way to begin the conference as a whole, to set the tone for the following debate of the next two days.

5On the theme of personal interaction and telcare:

‘… one thing... technology can never replace human contact of carers. Carers come to Frieda and, I think apart from the practical things that they do for her, I hear laughter going on all the time, you know, the social interaction and the laughter; that is so important and that cannot be replaced by technology.’

6On the relationship with existing care services:

‘Telecare only looks good because of the way the home care service has been operated – it doesn’t have to be done like that, it doesn’t have to be done like piece work2, where people rush from call to call. If the care service was provided and controlled properly and done properly, it would be no substitute for telecare.’

7On the dangers of institutionalisation of the home:

‘One of the down sides of having care is that the carers kind of import their ethos into your home and it does institutionalise your home in the kind of interactions sometimes. If you get an insensitive carer, who is perhaps… I have carers who come occasionally who ask the other carer, ‘Does she take this?’, and those kinds of experiences, or they are answering endless phone calls to do with other calls that, you know, are all agendas you don’t really want in your house when you are trying to fight for attention.’

8On care as a form of intrusion:

‘It’s very, very valid about the intrusion. We have to accept personal care. People coming in. But it’s a fine balance between maintaining your privacy and getting sufficient support that you need. It’s really something that’s troubled us for a long time and, as K has said, not all the carers are courteous.’

9On users as experts with valuable knowledge to share:

‘If they had actually used disabled people to deliver this (new telecare development), who actually had the systems, we could have been selling the worthiness of the system and having an influence in there and helping elderly people see that it could be a good thing for them, if it were offering them something that was useful... ‘Equally, disabled people and elderly people – I’m not drawing a distinction here – they are not stupid and they are wary of people who come and sell things at the door and they’re wary of… so yes, as you say, to have a user come and say how they have found it useful or not, is much more powerful…’

10These excerpts offer a critical platform for examaining the development of telecare. Conference participants were then introduced to the programme themes. This began with concerns about who are the beneficiaries of the development of new care technologies.

• Who is perceived to be the main beneficiary of telecare services – older people, formal carers, informal carers or medical professionals?
• What goals are being set for these new care technologies and systems?
• Whose perceived needs figure in the design and implementation of technologies which shift how and where care is delivered – and by whom?
• Who are the imagined users and beneficiaries of prototypical care technologies?

11The second theme concerned how new care technologies may be shaping both home and work.

• How do new care technologies affect the home lives of older people?
• What kinds of homes do older people and their carers want, and can technological systems can make homes better places to live in?
• Does the introduction of new technologies within the home increase or reduce an older person’s sense of security and identification with their home?
• To what extent are new technologies contributing to a greater ‘institutionalisation of the home’ and shifting power relations within it?
• How technology design takes account of issues of class, ethnicity and culture, and to what extent does it shape modes of care work and gender roles?

12The third theme aimed to investigate the material, social and affective design issues underpinning new care technologies.

• To what extent do new care technologies designed to meet the medical needs of older people in the home impact on their social and affective needs?
• There appears to be a gap between the care technologies that address the material needs of older people and those attempting to address their affective needs. Is this gap inevitable? What could be done to bridge it?
• Is it possible to design care technologies that might meet both kinds of needs, or recognise the blurred boundaries between these categories?
• In what ways do older people adapt the technologies offered to them in ways that better meet their needs and what can designers, practitioners and policy makers learn from this? Can technologies be designed so that they are more open to resistant/ creative use by older people and their carers?

13Finally, a fourth series of questions related to how new care technologies modify care interactions.

• How do new technologies challenge and/or support existing understandings of ‘good’ care?
• How is social contact valued in the design of these technologies and in policy around them?
• Do technologies reduce social contact or change its character?
• How are the new versions of social contact that come with telecare technologies perceived by older people?
• How can new technologies increase older people’s feelings of social connection and reciprocity?
• What new ethical and legal problems arise in relation to new care technologies and the data arising from their implementation?

1. WHO BENEFITS FROM THE DEVELOPMENT OF NEW CARE TECHNOLOGIES?

Plenary session

14Emerging technologies: making them relevant for older people / Andrew Sixsmith (Social Gerontologist, University of Liverpool)

15Emerging information and communication technologies, such as ‘pervasive computing’, ‘ubiquitous computing’ and ‘ambient assistive living’ have considerable potential for enhancing the lives of many older people throughout the world. However, research and development in this area has to deal with a number of challenges, not least being how should we explore, visualize and map out this uncharted area in order to exploit the potential. Important questions include: What are the important directions for research and development? How can we ensure that older people benefit from these technologies? How might these new technologies impact on or transform existing networks of informal and formal care and support? How can we ensure that some people are not excluded from accessing these technologies? What are the potential disbenefits and how can these be avoided? How can we improve the design and development process to ensure that new technologies are ‘user-driven’?3.

16The use of Information and Communication Technology (ICT) to support independent living for older, frail and disabled people / Nigel Barnes (British Telecom)

17Liverpool telecare pilot from a clinician’s point of view / Barbara Frost (Occupational Therapist, Merseycare Nhs Trust, UK)

18The talk provides an overview of the development and deployment of two advanced Telecare trials undertaken in Liverpool, UK. The first a pilot service to 20 Social Services’ service users provided Lifestyle Monitoring coupled with intelligent personalised alarm capabilities. Although a research pilot this has provided a valuable real service to both service users and the City Council for over three years. The second trial has explored more advanced concepts of specific ADL (Activities of Daily Life) monitoring and the creation of knowledge relating to an individual’s ‘wellbeing’. The focus is on longitudinal trend analysis for proactive care management. The talk discuss the design philosophy behind the systems and the development of a wellbeing model by system developers and occupational therapists. Practical use of the systems is also discussed covering differences between design and real-life use; feedback from real-life use; refinements and further developments.

Summary of discussion groups

19The discussion followed the presentations by Nigel Barnes and Barbara Frost which detailed a telecare pilot project undertaken in Liverpool, UK. Critical to understanding how and in what way new care technologies are being developed and distributed is an understanding of the goals being set for these developments. To understand who are the intended and actual beneficiaries of new the care technologies, it is important to consider not only whose perceived needs figure in the design and implementation of technologies that shift how and where that care is delivered, but also who the arbiter of these needs is. This raises the question of how the sometimes conflicting needs of health professionals, family carers and service users are addressed in their design and implementation.

20These issues formed the basis of the first discussion group theme between the participants: academics, service users, technology designers, practitioners and policy makers. The following points summarise the key issues arising from this discussion.

Basic premises

21Participants highlighted five important premises that should underpin any joint thinking around these themes and their meaning for a Europewide audience:

22The need to define what is meant and understood by ‘independence’ – and the role of technology in supporting people across a spectrum of independence from the healthcare system;

23Recognition that there are significant cultural differences across Europe and that this will affect understandings of how, where and by whom care should be delivered;

24Different healthcare systems operating across Europe mean that different opportunities exist for (wealthier) older people to decide whether or not they choose to buy new care technologies (NCTs). These systems also mean that the technologies chosen and rejected will vary. Different health care regimes across Europe will also result in differing levels of access to NCTs in differing places.

25Service users, carers, care/health workers and technologists talk about NCTs in different ways. Any effective discussion around NCTs, their development and policies surrounding their implementation require a common ‘language’ and understanding.

26There is a need to define who the users of these technologies are, i.e. older people, family carers, care and/or health workers?

University researcher (UK): ‘You say telecare per se would support people to live independently, but I have difficulty with this term independence because what you are doing is not making a person independent but supporting a person all kinds of ways… Is this independence indeed? In our research we also see different forms of dependence appearing because people get more reliance on the healthcare system, they know that they are checked, they know that they are cared for. It is a specific kind of independence which is actually very much supported in this case technology.’

Manager of care services (UK): ‘I would like to come back to the term independence and what it means. I live at home, I’m independent, I’m not dependent on care services, but I’ve got a smoke detector in my house and it would be quite useful for that to be linked into a monitoring centre so if it went off someone would come to ensure that my house wasn’t burning down. And I think it’s the same with an older person using these technologies, what exactly the device is and what exactly you’re trying to do.’

Core Issues

27It is critically important to start the process with older people themselves, in order to have a thorough understanding of what needs they have and what sorts of technologies they want to help them in their everyday lives.

28In developing and commissioning NCTs for older people, it is imperative to take into account the environment within which the technology will be located, including housing, family networks, community support and so forth. It is also important to think about what kinds of NCT devices are needed, how we want them to be and what we want them to do. Given many NCTs are designed and based around the home, it is also necessary to consider the potential for developing NCTs that promote the independence of older people outside the home. These issues are all very different and responses will shift according to who is the perceived beneficiary of the NCT.

29Discussion focused around the extent to which older people’s acceptance of new care technologies, particularly surveillance and monitoring technologies, was fear- and safety-driven. On the one hand it was suggested that acceptance of NCTs is based on the belief that any alternative option – such as residential care – would be worse than acceptance of NCTs in the home, however invasive. Thus, it was argued that technologies can produce as well as reduce fear. On the other hand, it was pointed out that older people accept that compromises are necessary to increase their independence. However, in discussing these issues practitioners maintained that, in their experience, it was families who were more likely to express fears than the older people themselves.

Manager of care services (UK): ‘You hear comments like family members say ‘my mother can’t stay at home because I’ll be scared about what’s going to happen to her’

Medical researcher (NL): ‘It’s actually more the families who are benefiting because it’s their reassurance that is provided by the system. But the burdens of the system, like the invasion of your privacy, or being monitored all the time, the burdens fall on the patient. I’m wondering who is benefiting and who, perhaps, the burden is inflicted on.’

30In sum, the above issues point to the need to change the discourse of aging and how frightening it can be, to one that it more positive and supportive.

University researcher (UK): ‘If you actually started to change the discourse of what it is to be older then you’re going to get different solutions. The discourse of what aging is, and how frightening it is, is already leading to technologies as a solution, and if we had a different way of thinking about what it is to become old then we might think of a different set of solutions.’

Power and Control

31A range of issues were raised concerning power and control. Firstly, though telecare can be seen as a proactive rather than a reactive healthcare technology, it was argued that ‘predictive technologies’ seek to monitor and change behaviour.

32This raised further debate about whether the information that technology gives is the same as that which is normally used in care – and if not, what additional benefit we gain from it, if any. Rather than answers, this lead to further discussion about who the real beneficiaries of this information are, where this information goes and who has access to it. While the anticipated beneficiaries would be older people themselves, it could equally be the case that the beneficiaries are, in fact, families, care professionals and/or technology designers. This might not necessarily be to the benefit of the older person themselves. Critically, then, we have little understanding of the extent to which this makes for a safer system of care.

33These issues highlight some of the ways in which cause and effect are masked by the complexity of NCT systems. This needs to be simplified.

34A further issue directly related to issues of power focused around who buys and installs NCTs and thus has the power to make decisions about who will have access to them or alternatively find themselves having to go into residential care. It is important to recognise here, however, that older people’s desire and willingness to see residential care as positive care choice will vary significantly across member states and with individual circumstances. Hence, older people, themselves, need to be closely involved in making these choices.

University researcher (UK): ‘What it seemed to me you were raising there [name] was almost a question of a division between the deserving and the undeserving.’

University researcher (Ireland): ‘If you’ve got the money you can buy one of these systems for yourself now, and we wouldn’t question it, right? You can go and live in a gated ghetto because of our security. It’s only when we’re doing it to somebody else that we have the ethical question.’

Telemedicine researcher (Norway): ‘I think this is also an issue about social control and freedom to choose and who and when is going to assess when an old person can decide whether they want to have these devices or whether somebody else should decide and this is also something that has to be institutionalise. How to decide when do we need to actually go into this situation and when can a person choose.’

35While, theoretically, technology can reconcile the needs of different stakeholders – including policy-makers, clinicians, families and carerecipients, some maintain that NCTs enhance the power of professionals and family care-givers rather than the older person themselves.

36Rather than focusing on NCTs based on supervision, monitoring and safety, perhaps we should focus on technologies that improve contact and communication with relatives and friends. It was argued that only by taking as a starting point the desires of older people, themselves, the things in life they value and appreciate – varying from listening to the radio to interacting with grandchildren – will these technologies become acceptable to people. The focus should be on directly improving life situations that are often marked by boredom and isolation.

Social care and wellbeing services (NL): ‘With the kind of monitoring technologies we’re looking just at the negative things, things going wrong, but there may be potential of using the same technology to do something positive as well, like connect people with friends or connect people with outside, institutions or society.’

37All the above points to the importance of empowering older people themselves by starting with their voices, rather than designing and installing care technologies on the basis of what others judge to be their needs. However, it also needs to be borne in mind that desires and needs are highly individual and will vary according to the particular disabling condition experienced. Hence, we need to be cautious of overgeneralization.

Who benefits?

Health researcher (NL): ‘If you are talking about this fear reduction, what we also see in our project has more to do with carers who are frightened that something will happen than the person with dementia themselves. But if you’re talking about also pleasurable activities they can perform with the aid of technology then the users themselves may benefit from it also.’

Healthcare manager (NL): ‘It seems to me that there’s one aspect we’re just not discussing at the moment, and that is the economic aspect of the whole thing. Because if we say everybody benefits then there’s at least one party, the multinationals which surely will benefit. And I think that the fact that those are the pilots we heard about can take place anyway only because technology improvement and companies that develop technology know that this at the end will be for their benefit. And I think it is not yet proved whether a healthcare system with telecare in place will be cheaper than having some more healthcare people which also would improve the wellbeing, the experience of wellbeing, of people at home.’

38The question of ‘who benefits’ raised debate and counter-debate about who is most likely to benefit from the growth of NCTs. These are summarised below.

39The reduction of fear following the installation of NCTs means that both the patient and the family benefit. The identification of a new market for technical goods within a growing sector of the healthcare population means that multinationals benefit.

40Predicted growth in the population older people across Europe, shortage of personnel in the caring services and growth of NCTs to replace some aspects of care work means that care-workers benefit.

41But a number of counter-debates were also raised in relation to these potential benefits:

42It is questionable whether NCTs are economically cheaper than other interventions. Surveillance and monitoring NCTs are largely designed to trigger some form of alarm for a carer or health professional to go out to the older person so it is possibly not the healthcare system that benefits. However, this needs to be measured against the benefits of helping to reduce the necessity for residential care. To fully understand who benefits in economic terms requires a comprehensive cost/benefit analysis. NCTs effect a re-framing of care tasks, placing more of the focus on nursing staff, therefore nursing staff may not benefit.

43Innovative systems are trialled, but often it is only the ‘cheaper end’ of a trial that is rolled-out more widely. Hence there are raised expectations and lost benefits in trialling NCTs.

Manager of care services (UK:) ‘From my perspective it’s not about replacing care workers because without human interaction a lot of older people are going to get lonely and isolated, and they’re going to go back into some sort of institutional care. It’s about how we make the best use of their time and effectiveness. We have a limited number of care staff available and we have to use them as effectively as possible, and it’s about using systems that recognise that.’

Telecare researcher (Norway): ‘I think we’ve mentioned a couple of parties that can benefit, like patients or people themselves, their families, the costs of the healthcare system could go down, and it’s always represented as if all these beautiful goals are all going in the same direction, as if there’s no tensions between them and I think we should be more aware of the potential tensions between these different goals.’

2. HOW ARE NEW CARE TECHNOLOGIES SHAPING HOME AND WORK?

Plenary session

44Home as in: home care technologies / Dick Willems (Dept of Social Medicine. Academic Medical Centre, University of Amsterdam)

45Home care technologies such as telecare reshape our ideas about what good care is, but they do so just as much to our ideas about what a good home is. Studying the normativity of home care therefore means studying norms of care(s) and of homes. I will develop this rather basic idea in my talk. I will initially focus on forms of home care that are not usually viewed as ‘tele’: high tech respiration support and oxygen delivery at home, and subsequently compare these with telecare proper.

46Not only does high-tech home care introduce new kinds of inhabitants in homes, it also transforms the home. Homes increasingly get wired and otherwise adapted to technology of all kinds, among which high-tech home care. The question about the ontological and moral status of man-machine combinations has a parallel for the home: what is the status of the home-machine combination? This is indeed an ontological (what characteristics does something need to have to be called a home), moral (what is the good with regard to homes), and even a political (where does the hospital-home hybrid stand in the private-public divide) question. The political question may be the most interesting one: what remains of the home as the private area par excellence when it takes on at least some characteristics of the hospital, an almost entirely public space? The aim of this talk is to open up a new space for (technology) ethics, precisely by looking at the way home care technology incites users to invent new ways of making homes good spaces.

47I will first discuss some examples of homes with high tech home care, and try to categorize the ways in which technology becomes an inhabitant of such homes – hiding, showing, and rebuilding. Then, I will discuss some ethical issues, using William Ruddick’s critical work as a starting point, which will take me to Simondon’s analysis of the way in which technology restructures space. At the end I will try to sketch what this means for normative studies of health care.

48Are new technologies shaping home and work? / Jan Thie (Vilans Knowledge Centre For Social Care & Focus Cura Care Technology Centre, Utrecht)

49We are facing an ageing population: the amount of elderly is growing and so is their average age. In general health related problems and disabilities will increase when people get older. Thus we are expecting a rise in demand for care. There already is a tension between needs and demands for care and possibilities for care delivery. There is a growing gap between needs and demands for care and the actual care to deliver.

50In general in The Netherlands expectations are high with regards to the possibilities of technology, especially Information and Communication Technology (ICT) to decrease this gap by diminishing the demands for care and increasing the efficiency of care delivery. ICT is supposed to support the patient, the informal caregiver (spouse, relative or volunteer) and (formal) caregivers. So far these expectations haven’t become everyday reality. In the last two decades in The Netherlands and many other European countries a countless amount of pilots and projects have been carried out in the field of home care technology. Many of them, even when successful, didn’t lead to structural implementation. And still we are convinced that there is a future with and for new care technologies.

51In this presentation I will elaborate upon this subject and examine how that future with new care technologies might look like. Focus will be on new technologies to support care at home delivered by professional and non professional caregivers. How will technology influence tasks and responsibilities of all involved in care at home? Once we have a clear view on this subject we might be better capable of bringing successful projects and pilots to full implementation.

Summary of discussion groups

52Dick Willems and Jan Thie talked about their experiences of entering and getting to know homes which had care technologies installed in them. Dick talked from his perspective as a researcher interested in the ethics of new care technologies, whilst Jan talked about his work as a practitioner, helping to implement new technologies. Both presentations focused on the Dutch context, but the audience found many resonances with situations in other European countries.

53The presentations raised questions about how new care technologies change our experiences of home and of (care) work. In these discussion groups, people focused on the meaning of home and how it is changed by the introduction of technologies. They also talked about care work – both that done by professionals and by family and friends (informal care) – and how new technologies are producing new forms of labour and new kinds of responsibilities.

Home

54It is hard to define what a home is. In the discussion people talked about homes as material places, homes as idealisations or as sites of meaning; and also as sets of practices and/or feelings. Importantly, it was also noted that home is not always a safe place or a happy place. It is easy sometimes to forget that homes can also be very difficult places, where comfort or safety is hard to achieve. This could mean that the goal of keeping older people at home as long as possible might not always be the best one. One participant, a general practitioner from England, discussed how the conference papers had opened his eyes to this issue:

Medical services manager (UK): ‘It seemed very easy to me, keeping people in their home, as a GP or as a doctor, that’s fine. But now we are recognising that the home isn’t quite such an easy concept as I thought it was. We have talked about whether keeping people in the right place might be [a] different [goal]; it might not even be their own home, it might be in their community… Some of the things we might be doing to achieve this independence might be radically changing their environment such that it was never their home [as it was] in the first place.’

55In discussion that developed on this point, people raised the specificity of dementia and the effects this can have on people’s perception of their environment. An English architect argued that:

Architect (UK): ‘I think with dementia it’s not necessarily recognising it as being their home; it’s a familiar [space], they can find their way around, the items are familiar… Most of them don’t think it is their own home after a while, but at least while they’re there they can get from room to room, they can find the bathroom, things like that. So it’s not home in the warm, cosy concept of home, its familiar surroundings, I think, that’s the important thing.’

56In talking about home, participants stressed that home is an historical entity, something that is neither natural nor inevitable. Home is something that has a history, and is culturally specific (although there are significant shared elements across Europe, such as a desire for a certain amount of privacy and autonomy for adults living ‘at home’). One academic participant pointed out that there has been a long history of introductions of technologies into private domestic spaces, and that there might be things to learn from this history. It is always important to note that ideas of home vary across and within cultures, and that telecare services need to take account of the diversity of European populations. This might mean introducing different technologies into a range of homes, or looking at home the service itself copes with diversity (for example, providing a telephone operator who understands local dialect or who speaks more than one language, or who can understand locally-specific issues arising for the client). The systems have to be open to learning about cultural diversity. Participants felt that there was a strong role for social scientists here to provide relevant research on these issues.

57Homes, then, are material spaces, with particular smells, sounds, objects and views. For ethicist and former clinician, Dick Willems, this is a question of aesthetics: what people feel or are sensitive to. An architect suggested that this is partly why introducing technologies in the home may mean the space no longer feels like home for the older person. If technologies are introduced:

Architect (UK): ‘You might cease to recognise it as you own home. It might look as if it’s been invaded. You lose short term memory, so you don’t remember the sign being fitted. You’re in this space and it looks like your own home, but there’s a sign fitted, so it isn’t.’

58Homes are also constituted by people and social relationships, in an ongoing manner over time. Telecare needs to work with this fact. Similarly, technologies are also not just technologies – they are relationships too.

Social care and wellbeing services (NL): ‘Sometimes it [discussion of telecare] makes [it seem that]… the technology is the solution itself, in fact it’s never the solution itself because it always needs a human environment in order to function.’

59People’s identities are therefore closely connected with their homes, literally perhaps ‘wrapped up’ in them, and the introduction of new technology can disrupt or change this (for the client and for others living there, including carers). This can be, for example, when the introduction of technologies change the use of a room substantially (a living room becomes a bedroom). But, as telecare providers from the UK argued, some technologies can be unobtrusive, for example, devices which monitor how many times the refrigerator has been opened. But does this unobtrusiveness mean they are less problematic in terms of changing the nature of home and work?

60This was discussed as an issue of privacy, and the groups questioned what privacy is and how much of it older people want. Another academic participant referred back to data presented by Maggie Mort from the focus group with disabled people in Leeds and talked about this in terms of ‘intrusiveness’:

University researcher (UK): ‘The work that was done with the group of people who are using these care technologies made it quite clear that they feel that some of these technologies, these sensors, can actually be intrusive. They are not large items that you can see but they still can feel them intrusive. And actually if you go onto those transcripts what’s quite interesting I think is they make quite clear that the sorts of technologies that are in the home, that they themselves can control and make decisions about whether or not they use them, are the sorts of technologies they welcome. The sorts of technologies that feed information back to other people that they cannot control are the ones that they feel are intrusive.’

61Participants agreed that ‘home’ is as a socially-constructed entity, and that it has a significant element of abstract or idealised meaning attached to it as a concept. One facilitator (social scientist) put this issue forward:

Social scientist: ‘One of the questions we’re handed for the afternoon is the question whether technology design takes account of issues of ethnicity. I would suggest to widen that question. What kind of ideals of home are being made and whose ideals are they, how do they look like? I mean which you can not just see in the technology but also for instance, if you have nursing homes or hospitals at the moment they all try to look as much like home as possible, so there is this whole ideology of ‘the home’ that also affects the design of places that are not in the conventional sense houses. So what kind of homeliness ideas do we see and what kind of images of home circulate both in technologies, in architecture designs, in other things that are done with houses and with healthcare technologies… and what kind of ideas are those?’

62Home was also seen as a kind of practice (rather than location), which led participants to question whether much is really known about what people actually do in their homes. This was particularly important when thinking about people with dementia, at whom many of these technologies are targeted. What kinds of memories do people with dementia experience? What is most helpful to them in terms of a living environment (a rich, complex one, or a simpler one?) The development of movement and other sensors in telecare will, of course, provide a lot of information about people’s behaviour at home, but this information needs to be well protected. It is sensitive information that could put people at risk of burglary, for example, if their patterns of being absent from the home become known.

63These discussions of risk linked to ideas of security. New technologies are supposed to provide older people with a sense of security at home, but some participants argued that this has to be underpinned by a complex system of response technologies. There is no point having a security alarm if the response is not quick and appropriate. Having a house full of alarms will not necessarily lead to an increased sense of security; indeed installing alarms can expose vulnerabilities that then have to be dealt with (e.g. a gas alarm goes off, someone has to deal appropriately with the situation). Technologies also need to monitored, so that any failure (of electricity supply for example) is picked up and acted quickly upon.

64Technologies may also frighten some older people. A participant working in a major telecare technology company described a Dutch telecare pilot for dementia suffers:

Anthropologist (NL): ‘After six months, they switched almost everything off, because a lot of people were very afraid of a voice coming out of the wall, and a camera that’s continually following you… So the people were continuously very disturbed by all the technology that they saw.’

65His suggestion for dealing with this problem was to tailor technologies to individual’s needs. ‘If you do it in a large scale, too standardised, you will have tremendous problems,’ he added.

66Spanish colleagues suggested that through the use of monitoring technologies, the experience of living in a home is broken down into fragments of time and activities that are counted. This changes the meaning of domestic life from one of ‘dwelling’ to one of ‘frequenting’.

Social psychologist (Spain): ‘You are not inhabiting it any more, what you are doing is frequenting, so you’re frequenting the living room or you’re frequenting the kitchen.’

67Ideas about home seem to constantly operate in relation to something that is understood as ‘not home’. In our discussions, institutions often filled this space. In talking more deeply about the impact of telecare on ideas of home, however, it became clear that it is impossible to sustain a dichotomy of home/not home (institution). Home is not necessarily right for everyone and institutions aren’t necessarily bad/ depersonalised. But, there is strong cultural doubt in many places in Europe that institutions can ever be like home:

Architect (UK): ‘I would say here that if institutions could become home then all the ideology of staying home and not building any more nursing homes or hospitals would fade. So I think there is a strong belief that institutions will never and are incapable of being home.’

68There is a substantial difference between institutions which people use for a short time (for example to give birth or to be treated for a condition) and nursing homes, because nursing homes are places from which there is no return. You can feel at home in an institution for a period of time, if you also have another home in another place. But if you only have the institution, you might never make this transition.

University researcher (France): ‘So the idea that there is no possibility of back and forth between some places and other places is the way home is defined, I would say, in western societies. Meaning that if you can go back and forth from home and institutions you can feel at home in institutions. Now if you can’t in some cases, again it really depends on the people, if you can’t and if this is the ultimate place where you really end your life then something different happens.’

69Sometimes technology was figured in opposition to the thing we call ‘home.’ Again, this distinction was challenged. The idea that technologies can change homes was accepted, but participants also argued that there are other significant actors at play in the situation of older people. Conditions like dementia, for example, can seriously change the experience of home for both older people and their carers:

Anthropologist (NL): ‘So, I think it’s interesting that we’re referring to home and technology as two separate entities. House can be a form of technology and home obviously is a subjective interpretation of a space. So I’m just listening to the examples and wondering from whose perspective are we calling a house a home? So I think that kind of confuses the question somewhat. But I have an example of a person who is elderly, I think 79, and she has for some reason lost the motivation or rationale for cleaning, and so entering her home was like being an archaeologist, going in and trying to decipher the layers of filth. And she decided to close off entirely one of the rooms because it had become ratinfested, but she still had objects in that room that she prized, for example her collection of Jung books and an old feather bed that she couldn’t use any more…’

Social scientist (NL): ‘What you bring in there is it’s not just technology changing the home, disease changes the home as wel. I can give an example myself: my mother when she became demented really thought that her house had moved, that it was in another place, it was no longer her house in a way.’

Social scientist (France): ‘Having someone who is changing and eventually disappearing as a person conscious of him/herself is something that might be even more important than the changes introduced by technologies. So I guess that the feeling that the carer might have of what does it mean to be at home’ for a person who is kind of disappearing, is something that is surely very difficult to tackle.’

70Ultimately, some participants felt that defining ‘home’ may be so difficult as to be unhelpful. In some cases, it might be better to think of places where we can live in a way that suits us best, in which our needs can be met. One French social scientist offered an interesting example of this, from her study with a group of autistic adults who were living part-time in an institution that facilitated their musical abilities:

University researcher (France): ‘So I asked [the psychiatrists] what is the rationale of this sort of sheltered institution… what does it mean [for autistic adults] to live there? Is it home for them? And they told me that home is the the place where life is smooth. This means that they [the psychiatrists and the autistic adults] can manage the whole day. These adults have numerous epileptic seizures but carers attend to them. There, they can do music, and that is something very important for these

persons. So of course they’re not at home, but they are neither in a sheltered institution really. They are in a place which fits what they’re able to do in some way, a place where life is made as smooth as possible.’

71She went on to explain that this institution was not considered home by these people, or by their parents, but that they were fulfilled there, which was the main point:

‘None of those actors are really able to name the home. The parents sometimes say we lost our children because they can’t live at home any more, and what I ask them ‘But what is home for your children?’… ‘Well, we can’t say because they are not at home any more when they are at home’, although sometimes, some of the autistic young adults say ‘I want to go home this weekend to see my parents’. So I feel like this idea of home is really something very tricky, and it might be interesting to see the different places where we dwell at different moments of life.’

72In French they say ‘the place where you live’ instead of ‘home’ and in the Dutch language people living in institutions are not defined as ‘patients’ but as ‘people who are at home here’. But a Spanish social psychologist argued that for people going into nursing homes, then is a profound sense of having lost something they call ‘home’.

Social psychologist (Spain): ‘So I think that in some sense it is very clear that people have this sense of having a house or a home and that they have abandoned that. I think that’s a real experience for people that are removed from their house, their home, to a residence or nursing home or whatever you call it. I think that probably we can try to define it here but for them that’s a real experience, a very clear feeling of losing something.’

Care work

73Telecare technologies also have a profound effect on the meaning of care work in the contemporary situation. Participants provided examples of this, arguing, for example, that telecare could mean a loss of the ‘localness’ in provision of care. This loss of locality in care provision could, they argued, lead to care becoming less rich and less relevant. There is, normally, lots of local knowledge that is important in providing quality care. This could be social knowledge about the older person’s usual habits, or knowledge about the local environment. It is important to maintain diversity in care (and this can happen through localness).

Social scientist (UK), summarising the discussion: ‘So there was this thing about understanding diversity and having local knowledge at play in the system actually gave more security, and there was a danger that in rolling out large systems there might be a loss of that local knowledge that actually helps to promote security and understanding and diversity.’

74Information about the home collected through telecare technologies flows into the work space of the professional, who then has to act on this information. The work of professionals is thus changed – rather than seeing the patient themselves and hearing a one-off report, the professional can access daily or even hourly data. This changes both the volume and kind of information on which treatment decisions can be based. Professionals may also become more involved in making detailed suggestions about or prescribing interventions into the home environment.

University researcher (Denmark): ‘My example is asthma monitoring. The possibility of putting medical knowledge into the home and putting self-monitoring into the home is very much put forward. It is assumed that this kind of certified knowledge will travel then back… and only that kind of knowledge which can then be seen on the screen of the professional. But of course what happens is that other things also travel back, making the professional have to deal with stuff that relates to things that go on in the home, for instance dusty basements. Stories about the home become attached to the data, the pure data, so that the work of the professional becomes also work of having to deal with that kind of information.’

One participant: ‘So that implies the technology does not only change the home but the home changes the technology, is that what you’re saying?’

University researcher (Denmark): ‘The home changes the technology but also the home comes into the professional’s space. It’s not just the professional’s space that becomes installed in the living room but also the home becomes installed to some extent in the professional’s space.’

Researcher (France): ‘So that means that they change their role too? They don’t have the same role as a professional.’

University researcher (Denmark): ‘Yes, precisely. Professionals I spoke to in relation to that they point to the fact that they don’t get pure data. Other things got mixed in.’

One participant: ‘There is dust in their data!’

75Technologies introduce new responsibilities for informal carers. As one participant stated, ‘when you take technology home the informal care-givers have a huge responsibility’. Familial roles also change:

Anthropologist (NL): ‘I’ve just returned from some field work so I have spoken to a number of people. The daughter who is having a role as a care giver, primary sort of informal care giver for her grandmother, was really uncomfortable with that role because she felt it was detracting from her identity as a [grand] daughter so she was unable to enjoy the sort of just spending time with her [grand] mother because she was forced into taking care of the more practical issues. So the grandmother actually decided to move into an assisted living situation, partly out of guilt that her [grand] daughter was having to spend too much time taking care of her.’

76Technologies also need maintenance, which is another form of work.

University researcher (Denmark): ‘I’m worried that we miss that they also need maintenance, that they also shape the work and may make more invisible the work of the family and the carers. The idea that they are not there so there won’t be any maintenance there, I think that has to be done, isn’t that kind of an illusion?’

77Issues pertaining to gender were also discussed: when thinking about working with care technologies, it might be important to think about how men and women relate to technologies and their potentially differing degrees of familiarity and enjoyment of technological systems themselves.

3. MATERIAL, SOCIAL AND AFFECTIVE DESIGN ISSUES

Plenary session

78Mediating loving care or vital signs? the sociality of care technologies / Ingunn Moser (Centre for Technology, Innovation & Culture, University of Oslo) and Jeannette Pols (Academic Medical Centre, Amsterdam)

79The state of the art report on telecare for this conference suggests that the design of new care technologies favours ‘hard numbers’ and the measuring of vital signs. This gives these telecare devices the trustworthy aura (and clear financial path) of being ‘medical devices’. When blood pressures, peak flows or weights are measured, this enables health workers to remotely monitor patients with advanced chronic illnesses, such as heart failure, diabetes 2 or COPD.

80The report also points to a growing recognition of the need to focus on the social and affective needs of older people in design of new care technologies. On the one hand, the problems of older people with chronic illnesses cannot be narrowly defined as ‘medical’ problems. They may be lonely or worried as well. And on the other hand, what defines ‘medical’ problems and care has never been reduced to lab-tests and numbers. The social sides of the visit to the doctor have been extensively documented.

81This presentation draws on ethnographic research on the implementation and use of telecare systems, in order to show that such devices are never simply ‘medical’ or functional, and never work on their own. They are always dependent upon on social relations, affective ties, aesthetic preferences and cultural habits.

82We seek to offer a framework and some analytical tools for taking into account the sociality of medical technologies and the ways in which they meet the multifaceted needs of older people. We will give some examples of users’ creative and artful integration of new technologies in their everyday lives.

83The design of environments and technology to support enjoyable activity for people with dementia / Judith Torrington (Architect, Independent Project, University of Sheffield, UK)

84The INDEPENDENT project, supported by the Engineering and Physical Sciences EQUAL programme, was concerned with designing technology and supportive environments to enhance enjoyable activity for people with dementia. Several technologies were developed and tested by users in a range of settings; people’s own homes, sheltered housing and residential care homes. The interactions between the person with dementia, their carer support, the technology and their physical environments have an important impact on the successful implementation and sustainable use of supportive technology. A tool was devised for the project to identify potential barriers to the implementation of new interventions. The tool identified significantly more barriers to people partaking in enjoyable activity in care homes and sheltered housing developments than in private houses; the implications of this for designers and care providers are discussed.

Summary of discussion groups

85The literature review reveals that the majority of these emerging technologies focus on medical, functional and/or technical needs of older people. These technologies, usually involving sensors, alarms and web-based or telephone links, remind older people to take medication, to eat, to exercise, or to close their doors and windows, for example. They alert carers when the older person deviates from his/her daily routine and/or fails to respond to automated reminders to follow this routine. The focus, then, is very much on averting health risks – rather than enhancing the lives of older people.

86There is however a growing recognition that design of new care technologies has tended to focus too narrowly on medically orientated client needs, and that this approach is too limited. There are now a small number of emerging care technologies also addressing social and/or affective needs of older people. But how are these concerns addressed and taken into account in design and development of new products? And what difference does it make, how does it affect the devices, their use and users? What do they enable, and how are they received? And what can we learn from these new emerging technologies with regard to how we critically and constructively evaluate their contributions? These were among the questions explored in the two presentations given on this theme, and the ensuing discussions.

87Judith Torrington focused on architecture, and introduced a theme to do with the design of space, and of care facilities/institutions in particular, but also of how to design for life. Jeannette Pols and Ingunn Moser analysed different new care technologies with an eye to how they, explicitly or implicitly, incorporate users’ social and affective needs, and suggested ways of thinking critically and ethically about them. What the presentations shared was the view that we need a better understanding of how care technologies are involved in, and even entangled with, the everyday lives of their users, affording or denying particular relations, interactions, positions and attachments.

Basic premises

88Participants identified a set of premises that should underpin discussions on this theme:

89There was a plea for considering the alternatives to the telecare developments that we see becoming realised today, rather than starting with developing technologies only. It was claimed that discussions about telecare futures tend to make existing alternatives, including nursing homes and basic home care services, totally absent. They simply don’t figure as real alternatives. Telecare developments are, however, still de-pendent upon these and their continued existence (especially home care services). In considering the role for new technologies in care, therefore, we need to take into account the particular and varying environments of the new technologies – including different formal and informal health care services, family networks, community support, and housing. In addition, we have to take into account that there are differences with regard to access to new care technologies both between and within European countries.

90Further, it was pointed out that discussions on new care technologies need to critically reflect upon the ideals underlying such developments. What norms for what it means to be old, patient, or human, do these technologies embody and express? The pressure is to be self-managed and independent. But even a desire to stay at home does not necessarily imply a desire to be independent. It may also mean a desire for community, to stay in the community that knows one, and cares for one. Such other values and qualities of life among older people are seldom taken into account. There is little awareness of the facts that old age may mean that what is important changes; that there may be significant differences across Europe when it comes to the meaning of old age and its values; and that there may be generational gaps too, for instance between the group of so-called ‘future users’ and elderly people today.

91Along the same lines it was also stressed that one should beware of generalizations, since desires, needs and interests are not general, and can be expressed in many different ways. What elderly people value and appreciate, may vary considerably from cooking to doing intellectual or political work, listening to the radio or interacting with grandchildren. The needs and desires of people with dementia are also different from those of other patient groups and elderly people ‘in the general’. And still, the needs of people with dementia are also individual and idiosyncratic, as well as changing with the disease trajectory.

University researcher (UK): ‘Tele homecare, it was said, was also about people. So where are the people? Not just the person living at home but their families, their networks, their social networks. It is not just buildings and space and surfaces and all those things. It is very easy to talk about those things and forget people are part of these technologies.

‘There was quite a lot of discussion, on different points, around this dichotomy, or trope, about keeping someone independent in their home versus a de-personalised form of care in an institution. But that is not that easy, and this dichotomy doesn’t really work. This is not simple, this is very complex. The home is not necessarily the most appropriate place for everyone and the institution is not necessarily going to provide de-personalised care.’

Avoiding health risk versus enabling and offering value

92In discussing medical, social and affective design issues, discussions about who benefits and whose needs and voices are taken into account in design and development of NCTs were refocused and reframed as question about what kinds of needs that are taken into account. One strong message was that in designing care technologies we need to start from the desires of older people, the things in life they appreciate, and have used to appreciate, rather than health indicators. For people whose life situations are often marked by boredom, isolation and restricted access to people, places and activities they care about, social contact, to be of use and help to others, or have access to a garden, may be more important and relevant than health risks. Only when new care technologies also bring something users value and desire, something that directly improves their life situations, will these technologies become acceptable and useful to people.

93The discussions then turned to the question of how we know what elderly people, and people with dementia in particular, value and appreciate? How do we listen to their voices? Here it was pointed out that in care practice, one has a set of practices and techniques for listening and attending to desires, learning about people’s likes and dislikes, their histories and valued activities, that take people seriously without being relying on rational discretion, informed consent and or verbal competence only. Judith Torrington for instance told about a project she had been involved in where they actually had produced such an inventory, a ‘wish list’, based on people with dementia, using focus groups, and involving carers, family members, and volunteers as people with dementia themselves. It was then suggested that one of the outcomes from this conference and follow-up projects could be to produce a similar list of problems that need attending to for the context of design and development of new care technologies.

Social scientist (Norway): ‘We should start not with needs – needs too easily become articulated as medical or technical. Instead design should start with the desires or wishes of people. What do they really want? What is of value to them? Perhaps it is more important to play, to be on your knees and playing all night with a pet dog, or a robot dog for that matter, and then that gives you exercise as an extra. But what you needed was the play and fun and humour, someone who cheers you up and for whom you have to care as well…’

Social scientist (NL): ‘Shouldn’t we have an explicit discussion about what we want to die from? Personally I don’t mind dying from an infection, but I really mind dying from boredom… It’s very strange, we all think that, but the discussion keeps on evading.’

Care versus technology, emotion versus function?

94Triggered by the presentations and discussion about how design and development of care technologies could be pushed towards including users’ social and affective needs, concerns were also expressed that we separate out and contrast social versus medical care, care versus technology, and emotion versus function, in ways that forget that function, technology and medicine also always come with certain forms of social relations, values and emotionalities. It is not a matter of adding or bringing together what was previously kept separate. Even the most functional and medically oriented device, aiming for instance at self-management and independent patients, inscribe certain social relations, values, forms of attachment, and networks – whether implicitly or explicitly. In most cases, they remain implicit. They may aim at independence, distance, neutrality, and or fewer points of contact, but they still order social relations and emotions. And, vice versa, social and affective designs also have functional and technical aspects. The crucial question, then, it was emphasized, is what functions technologies enable and support, and what relations and networks they come with. We should therefore avoid mobilizing dichotomies and instead articulate and make explicit these ‘scripts’ that technologies carry, and open them up to public scrutiny and debate.

95The implication of this is that sociality and affection are not characteristics that can just be added to technologies, post hoc, as one adds cream to a cake. The subjective positions, social relations, and affective ties a technology affords, have to be considered from the very start of the process.

University researcher (NL): ‘There is always this question when people imagine uses that are not exactly the one that you were supposed to have with the technology, and especially when they use it to have social interaction. It is somehow… sometimes considered as a kind of unexpected by-product of the thing. But in a way, […] in a way it is maybe because people tend to make a separation between medical care and social care, and, as nurses know, both goes together and so what users tell us is ‘okay, you try to make a separation, I’m not going to play this game, I’m going to bring back the social interaction and it is not something which is outside the picture, but it is something which is central to the relation and I imagine another way to put it back in the system’. So I think we should not see that (social interaction) simply as parasiting the system, but being at the heart of the system.’

‘We had the tension between the machine and emotion, and actually in a way they are very odd words. […] If you contrast functional and emotional, then you pretend that emotion is not functional as well. It may be very functional to be very emotional because everybody will be happy or quiet or whatever it is. So there is always the question of which functions…’

University researcher (UK): ‘What does a (telecare) device do? That’s actually the question, rather than think about the thing and technology itself. Think about what kinds of relations it establishes, what kind of networks it comes with and what kind of relations it makes or opens up for people.’

Flexibility versus structure

96Further, it was also noted that new care technologies vary greatly with regard to how open and flexible they are towards new and hitherto unimagined uses. Some care technologies are very structuring and prescriptive for the activity they enter, and can only be used in certain preimagined and preprogrammed ways. Others are less structured and allow for many forms of use, for negotiation, and for the creativity of their users.

Social care and wellbeing (NL): ‘You made that very interesting point about the middle way: the technology should be supportive but also do other things as well. I think that’s probably the kind of ideal situation. Something flexible.’

Substitution versus enhancing relations and attachments

97Some participants were not comfortable with the idea of electronic care devices and robotic pets because in a paradoxical way they have precisely been designed to substitute or supplement some failure in social interaction – for instance the fact that people feel lonely and isolated. But then it turns out that what was designed and programmed as a substitution for human relations, whether intended or unintended, sometimes enable new positions and rewarding relations. So sometimes projects intended to shift parts of the care – done through direct interactions and visits – to electronically mediated interaction, provide new opportunities. And sometimes technologies are flexible enough to allow users for instance to use computers installed for contact with service providers to make contacts also with friends, relatives and or internet networks of elderly people. The conclusion then was that we cannot make a simple statement about the goodness or otherwise of new care technologies. The value of such shifts cannot be assessed in the abstract, but has to be assessed in real situations. One has to see them in action in particular contexts and situated interactions, and even maybe to adjust the technology when seeing how it is used, in order not to have adverse effects for some people.

University researcher (UK): ‘I guess that’s a question of whether it [the technology] is a substitute or whether it is something that facilitates other forms of contact. I guess our conclusion if we had one would be that we wouldn’t be so happy with it if it was simply a substitute, but if it’s something that builds on your relationships or makes new ones we might feel happier.’

Architect (UK): ‘Well I suppose the robot dog is a safety device, suppose the dog is sensing what the user needs doing with the knowledge that it’s a dog that’s there to look after you. Would it be more acceptable, or have any advantages at all over a sensor in the wall, or a button you press? I don’t know the answer to that, because one of the things she said is that ‘… I can tell secrets to you – and you don’t tell anybody.’… It would have to be a caring dog, wouldn’t it? It’s a dog that is your companion and it would do things for you when you need it, it can’t be a spy.’

University researcher (NL): ‘But the good thing is, these users care for this dog, so they have to put it to sleep and wake it up and do all kinds of things to make it work, so it’s in a different position. So instead of being cared for they are the carer of something, that’s very empowering.’

Telecare technology provider (UK): ‘It obviously does then change the relationship. The big thing is the social contact that everyone’s after, that came out yesterday as well with people learning how to fool the system so they get additional contact. Obviously in most cases that’s still going to be a caring relationship because it’s going to the carers, but perhaps what we really want to do is somehow more to network the individuals themselves. That comes back to your point of having… within the environment you have those informal meeting places… where people will naturally congregate. If we can perhaps also turn that around into the technology so that people with limited capacity can still initiate contact as and when they want it. Much as everyone else would…’

Designing for security versus quality of life?

98A recurring issue in discussions was the focus on security, supervision and monitoring rather than for instance contact and communication. With regard to design of care homes, it was claimed, one of the problems is that they are so hedged with regulations that it makes any sort of innovative design difficult. Each new bit of control and regulation comes as a result of a disaster somewhere, and then it’s an immediate reaction. In this way buildings usually end up much more restrictive than they were intended and designed as. The potential of buildings remains unused. Balconies are not used or closed in with glass, courtyards are closed off, and so on. Studies have shown, however, that there is an inverse relationship between the degree of safety that was imposed in care homes and the freedom that people felt they had to enjoy life.

99With telecare solutions, however, bringing services into people’s private homes, this changes. Yet the focus is still very much on security. In this context, this creates vulnerability as well as false security, it was pointed out.

University researcher (UK): ‘We have talked a lot about security, and this notion of false security or perhaps a vulnerability which comes along with the security. So you have the security of the system and all the sensors and all the Smart Home technology, but underlying that, or coming with that, is also a vulnerability to failure, to power cuts, to downturns… To what Nigel Barnes said this morning: ‘We don’t really like doing gas alarms, because if there is a gas alarm we’ve got to do something about it’, and that’s actually a quite complex thing to think about. And very serious. So then it was also talked about the back up systems that are being worked on but then again what kinds of emergency plans are needed? We didn’t have to have emergency plans before we had telecare so… What is going on here with that sort of vulnerability?’

Social services care commissioner (UK): ‘It’s about learning to risk take again, isn’t it? […] In England everything is about having people living at home longer and not so much institutionalised care, but with that comes that you have to allow some risks. And it’s getting our head around that, indeed not shutting everything off because of the risks or the responsibility of others… and I’m sure that’s something we need to get our head around.’

Design as fix versus design as process and involvement

100The presentation on architecture brought in an approach to design of spaces for elderly care and dementia care as an ongoing process – ‘designing for life’, – but also one in which people living in those spaces are or could get involved. An inventory or ‘wish list’ of people living in care homes resulted from such a process and project. In discussion this was linked to parallel approaches and traditions in design and development of technologies. The question this raised was whether and how you could get people involved also in processes of design and development of new care technologies and services – by bringing for instance designers together with care providers, users, relatives and other relevant actors, not only as a ‘plug-in’ at one moment in the design process but on a more regular basis, with regular revisits.

Social scientist (UK): ‘With certain sorts of dementia as you were talking about the walking business, the compulsion to walk, people go through different physical stages and they need different care at each of those stages. And probably increasing care at each of those stages and so if you have a home that people go into at the beginning of their illness they’re going to need very different facilities by the end of it.’

Social scientist (France): ‘I was wondering if it would be interesting to have a look at technology each time on the ground, of the enabling effect of technology. For example I think that this problem of the safety constraint and things like that, maybe one area to develop would be to think of technology as being able to make these constraints rather invisible or not too invasive. So how is it possible for example to have fire doors but that those doors don’t act as fire doors in the usual way and life of people.’

Critical and ethical questions around new care technologies

101Summing up, then, papers and discussions on this theme resulted in a list of critical and ethical questions that need to be addressed in regard with design and development of new care technologies. Starting out with questions about how to broaden the focus from material to social and affective design, the discussion moved to asking:

102What needs and desires certain care technologies take into account?

103What positions, identities, and relations they afford?

104What attachments and detachments the technology opens up for?

105What norms for being human, elderly, patient, care receiver and carer the technology enacts?

106What the technology does and enables, what network it comes with, and how it works in practice, at each different stage, in a user and technology’s life?

4. HOW NEW CARE TECHNOLOGIES MODIFY CARE INTERACTIONS

Plenary session

107Ethnographic research in the Catalan Red Cross telecare service. A chance to rethink user-centred telecare services between social scientists and care deliverers / Daniel Lopez & Miquel Domenech (Dept of Social Psychology, Autonomous University of Barcelona)

108Through an ethnographic study about telecare practices and user’s incorporation of telecare devices we are going to display the synergies between social scientists and care delivers that came out from it and its effect into telecare practices. Taking into account this experience, we want to discuss together with Red Cross Home Telecare managers about the role of ethnographic research and social scientists on the design, implementation and use of telecare devices and the relevance of focusing on the specific and actual telecare practices in order to understand how European health systems and policies work. As a result, we want to put forward co-research methodology as a way to produce fruitful synergies between academics and professionals who are working on telecare.

109Spanish Red Cross and the development and implementation of Telecare projects focused on dependent people necessities / Marti Martinez (Home Telecare Service, Catalan Red Cross) & Julian Andujar (Tecsos Foundation)

110The aim of this contribution is to present the background of the Spanish Red Cross on delivering care to vulnerable people and the current development and implementation of telecare technologies carried out with TECSOS (Social Technologies Foundation).

111The Red Cross has spent a number of years establishing partnerships with technology providers (e.g. mobile telephone companies, software companies, universities, government administrations). This has enabled us to test and approve prototypes and support devices for vulnerable people within our programmes and, equally importantly, bring these technological solutions to those sectors of the population that are, traditionally, the last recipients of these kinds of innovation; that is to say, turning society’s most vulnerable into the primary beneficiaries of technological advances. It is a ‘win-win’ situation where the providers also benefit from contact with an institution such as the Spanish Red Cross that provides them with knowledge about the real needs and feelings of vulnerable people, as well as those of people in their own environment. This background is essential for design care technologies for all: simple and friendly for the people that they are addressed to.

112Because of this, the Home Telecare Service is a project that has been developed and implemented successfully. And this context is what enables us to be aware and face emerging problems that are constantly coming up with the technology. For example, situations of resistance to use the telecare such as reluctance to wearing the alarm pendant, or situations where some groups may be excluded because of the technological designs, (e.g. people with severe hearing impairment).

113As a consequence of this aim to develop care technologies specially addressed for vulnerable people, TECSOS (Social Technologies Foundation) was formed in 2002 between the Spanish Red Cross and the Vodafone foundation. The activities carried out by TECSOS can be divided into three main blocks: Innovation, Dissemination and Training. Innovation, which dominates the Foundation’s work, consists of carrying out theoretical and practical work that serves as a base for the improvement and search for new services, principally in Home Telecare, Mobile Telecare and Telemedicine services. Innovation is a four-stage process where the Spanish Red Cross connection is essential from the first stage, where the need is identified, through development, technical testing, and social testing, to the implementation of the pilot test.

Summary of discussion groups

114New care technologies inevitably challenge existing definitions of ‘good’ care. Their use highlights concerns about conflicts between their potential benefits and declining social contact, raising issues of social isolation and mental well-being. There is a potential for care technologies to be seen as a shift towards surveillance and monitoring of older people and the removal of risk, rather than enhancement of care. Those implementing new systems need to take seriously older peoples’ ongoing and ever-changing needs for meaningful human interactions.

115The presentations in this session from Daniel Lopez and Miquel Domenech, and also Marti Martinez, looked at the development and operation of home telecare and the relationships emerging and forming around the system. The presentation from Julian Andujar explored the newly developed mobile telecare which moves ‘care’ outside the home and therefore implies a different set of social relations.

Existing understandings of ‘good’ care

116There was much discussion about the relationship between developing new care technologies and the giving of ‘care’, and more fundamentally, what is meant by care.

Anthropologist (NL): ‘I think care as a phenomenon is quite interesting because it’s so multi-faceted. The medical definition of what care is sort f the accepted norm, it involves certain kinds of physical functions and aspects and dimensions. But there’s so much else to it I think it’s important to get on the table, especially when you’re talking about self-care or certain sorts of care-related things in the home. So I just put that on the table again perhaps, I’m already distinguishing between the professional care that you might have in a hospital as opposed to the more TLC kind of things, tender loving care or just the presence of people being there. I think that’s a very fundamental, that kind ambient care or tele-hub care, because so much I’ve found the elderly appreciated was the presence of another human being.’

117The multi-faceted and changing nature of care needs had to be recognized, as did different models of telecare across the spectrum of need, ranging between complex medical issues and loneliness. This led to discussion about whether new care technologies could be thought of as ‘care and company’. In the case of home alarm systems where the older person can wear a pendant to contact the centre, to call for help, it needed to be understood that ‘calling for help’ was itself problematic and changed the relationships involved.

Social psychologist (Spain): ‘The person in charge of the service told us that if people contracting, hiring the service, push the button too much, then it is a problem because it means that they don’t need care but something else, company, or they have a social problem. I think that’s interesting because it revelas that behind this was a conceptualisation of what is care. Care is not company people, care is not being there all the time, care is to give you something when you need it but not all the time, because you are not supposed to need it all the time.’

University researcher (Spain): ‘This is a change in care interaction, because the traditional familiy care is: you care for someone and you don’t need that your relative ask for help, ask for. It’s something that is always there.’

Evaluation of telecare

118There was considerable discussion on the ways telecare technologies get evaluated using pilot projects which then serve as evidence of their effectiveness. This was seen as highly problematic because of the differences between trials/ pilot projects and the ‘real world’. Interactions and relationships shift considerably between what takes place in well-funded pilots and the everyday situation when systems get ‘rolled out’.

University researcher (Portugal): ‘When we are talking about the pilots there is a lot of evaluation and people are asked to answer in terms of what was working well, what was not working so well. But is there any opportunity for users or citizens who are involved in these processes to introduce changes?

119It was felt that there were very few opportunities for users of the systems to bring forward any collective knowledge or response to them. This is because individuals were targets as recipients of care, rather than groups. Older people as individuals were unlikely to be able to organise themselves into a user group with a view to influencing policy or practice. Patient organisations and users groups were seen as very important in the shaping of health services, but such organisations were unlikely to be formed by groups of older people united by one particular condition or identity.

Social scientist (UK): ‘If it’s a more medical type service it’s usually subjected to very rigid forms of evaluation which are tightly drawn along control trial lines, randomised control trials even of dynamic technologies which are impossible to do, and there is absolutely no way there’s going to be any influence on those because those have to make everything stand still, you can’t have people changing things. And then the pilot maybe a success or may not be, but then the service is rolled out and there the opportunity to influence the system is then lost.’

Telecare professional (NL): ‘The problem is when there’s no central financial governance anymore them the incentives of all the different stakeholders change and it just fades away, it’s gone. Also I think that during pilot projects the project structure is very horizontal and well if you would adopt the pilot in real life, continuous phase, that’s also not often the case, most often there are work parties involved, different companies, so already there is some fragmentation because of the different institutions, and fragmentation because of the functional structure of the companies. So there’s all… the translation from the pilot to reality.’

120But it was felt that evaluating the telecare technology was somehow missing the point: if it is the technology that becomes central, then care itself might become invisible:

Anthropologist (NL): ‘When I design my research field work, I consciously decide not to focus on technology. I focus on use of technology in relation to other kind of social practices. So it’s more robust in the sense that I’m achieving insights about the meanings of experiences of people in real everyday situations as opposed to a particular type of technology. So in relation to the discussion about pilots, it seems to me that if you could somehow achieve that kind of level in addition to any kind of specific and logical use, that maybe helps give some guidance in how this might apply in everyday life, or a version of it. Maybe it’s a question of setting up a pre-trial and post-trial or something, I don’t know. But you’d want to establish some kind of base line I suppose, then you’d want to see how the technology impacts that.’

121The issue of everyday practices was seen as essential to the take up or use of alarm devices, for example. If the client needed to change their normal routines within their home in order to access the alarm system, they were less likely to use it. This might explain why many older people did not like to wear their alarms, or did not want to use them: they did not want to ‘bother’ the service, or might use it only to please a relative or caregiver. Relatives however, could often gain freedom from anxiety if the older person would agree to use the device. This was seen as delegating the anxiety to the device. In some ways the alarm device could be seen as a mediator of family relationships:

University researcher (UK): ‘It’s not just the daughter using it to not feel guilty or worry it’s the mother using it to keep the connection going when she wants to. Or I guess use the opposite – ‘Go away, go away, I’ve got this nice thing on, you don’t have to worry’ – you know, the child that you don’t want with you, you’re sick of them and they’re bothering you, ‘I’ll put my thing on now, will you go? Go on holiday!’

122Neighbours could also be relived of anxiety if certain devices, such as gas shut-off systems, were installed in a user’s home.

123There was an interesting discussion about the differences in acceptability between the pendant alarm and the mobile telecare phone. However it was noted from Julian Andujar’s presentation, that there was far less reluctance to use the mobile outdoor device.

Architect (UK): ‘If I don’t want to wear that pendant it’s because a kind of internal stigmatisation. I don’t want to wear it because you might think that I’m not very capable of doing my things. But using that mobile device outside, that’s another sense of urgency. Within my home I feel at home, I feel at ease, not being in danger. My 85 year old mother… she’s getting a little bit frail so I discussed the use of a tele-alarm, social alarms. But she says ‘That’s magnificent device, but not for me, but the neighbour, she has fallen twice’. But when she goes outside, I think that she might be interested in using that because the sense of urgency for her outside her home is I think bigger, because outside that’s the outside world and she doesn’t feel at ease, not as she feels inside the home, and perhaps that might be the reason for interest in using that mobile alarm while not using the pendant.’

Responsive or Preventive?

124Alarms systems can be responsive – the older person actively has to decide to press the alarm and call for help. But environmental sensor based systems (smart homes) are largely preventive. This involved differences in the perception of risk. The BT example presented on Day 1 of the conference took the model of telecare into a different realm of risk:

Social psychologist (Spain): ‘I was touched by a point, he said that all the system was to prevent accidents, so we have moved from what would be a quick answer, a quick response to accidents, to prevent that accident and that makes a difference, a big difference, about what the system means and what are the effects on people, very important difference… The first generation (responsive) assumes that you could be in (at) risk, but it was part of the idea of being at home, you assume that because you want to be at home you have to assume that you are at risk. But now the message seems to be you can be at home with no risk because we are going to prevent any accident.’

125There was much discussion of the pendant alarm device in comparison with the smart home approach. The former was seen as active while the latter was viewed as passive. The smart home approach was seen as aimed at a new category of user, called the ‘predependent’. This involved a complex shift in the meaning of ‘autonomy’:

Social psychologist (Spain): ‘But I think it has a conflict in this kind of shift because telecare promotes autonomy and autonomy entails taking decisions, and that’s why one of the main features that you have the decision to press the button or not, but in this new sort of technologies of environmental control your decision is useless, it’s not necessary. And how can you justify this kind of services? Because this is not a question of autonomy, it doesn’t matter if you are autonomous or not. So it’s a shift also in the value of autonomy as something important for a human being.’

Social scientist (UK): ‘So what we’re saying is they are re-defining autonomy, independence, it’s not about autonomy or independence as we have understood them, it’s about a new form of independence. if you could even call it that.’

126The question of whether telecare enables or restricts older people was linked to whether systems are designed to enable clients to initiate contact, either with the call/care centre or indeed other users or groups. For example in discussing screen to screen systems, if the user could initiate contact then this meant that the range of social interactions possible could be widened.

Dangers of replacing human/physical contact

127As in discussions from other themes, participants were concerned that telecare technologies might be used to replace face to face care workers with the resulting lost of human contact. This was discussed from the perspective of the healthcare provider who was rained to rely on sensory messages when calling to see the client. Touch and smell were considered particularly important here.

Telemedicine researcher (Norway): ‘I think it’s a very important question to ask ourselves, whether or not the quality of the effect of care is changed by the fact that you’re not actually in the physical space. Because communicating is built up on different parts, it’s not just the words that you share it’s also what you see, smell and feel when you’re around somebody else. And the actual fact of being in somebody else’s space does something to the communication and the dependency that you have if you need to get care.’

128There was also the question of the instincts of the care professional, which had been built up over time, drawn from experience of working closely with patients and clients.

Telecare researcher (Norway): ‘I think good care to people with early stage dementia is based on the fact that we have a sense of what’s going on. And that’s not just for care, that’s an important part of how we interact with each other. How do you make contact with somebody? You look at them you smell him, you feel his presence and that does something to you.’

129Certainly in dementia it was important to build trust between clients and caregivers and this was seen as more difficult by means of a telecare. Contact was more than ‘just talk’. It was said that in telecare, there was no such thing as a ‘false alarm’.

130It was noted that in some telemedicine examples practitioners and users acquired tele-skills through using systems and finding ways to make them work. They were particularly likely to do this if they realized that they could save time and travel costs in this way. In some cases, e.g. tele-psychiatry it had been reported that certain users found they gained great control over the consultation, in the sense of being about to turn off the device if they didn’t want any more contact!

131Social contact could sometimes be an unforeseen outcome of a system designed to be ‘efficient’. Older people could sometimes find ways to use the system for social contact, rather than personal care. Community alarm services could be enhanced to link in with wider social networks:

Social care manager (UK): ‘In Walsall what we aim to do is to link our service users into the wider social networks that already exist. So the whole idea is to say to older people okay you… take for example community meals, meals on wheels, you know okay why do you need a meal at your home? Why can’t you go to that pub there which produces a meal? Would you like to go and have your meal there? Because we can purchase a meal for you, and you get some social interaction at the same time.’

132It was considered that care of technology, such as replacements of batteries or maintenance of equipment, could also involve social interaction with users. Just as with cleaners in hospitals, technicians would get to know clients and notice when they might need additional care or help.

133It is important to judge telecare systems in action, rather than in the abstract, and be able to make adjustments according to the needs and situations which people encountered in their everyday life. Telecare, it was felt, tried to make a separation between medical and social care, but it was well known by practitioners and patients that these were in fact interlinked. Users and practitioners would find a way to bring the social back into the technical, and not ‘play the game of separation’. Social interaction should not be seen as something which rides on the back of telecare systems and ‘solutions’ but as something which is at the heart of them.

Social scientist (France): ‘Can we imagine a setting within which the question of social needs are at the core of the design, the conception and the dissemination of the technology? What sort of things might be put together?’

FINAL SESSION OF THE CONFERENCE

134To bring the conference to a close, we facilitated a plenary discussion. All participants were asked to write down three things that had surprised them over the past two days’ discussions, and also three things they had learnt which they would like to take forward into their own practice (whether that was clinical, policy-oriented or research and development). These were then collected by the facilitator, summarised on screen, and discussed.

135Some key points of learning reported by participants were:

1361. – ‘Home’ is something to be taken seriously:

‘I learnt that the home of elderly people or person, is very important in what technology does. I’m busy with technology and I forgot that the home of a person, where you place the technology, is important to recognise and take with you in the development of technology. So that was something I learnt on these days.’

1372. – Home is always in process:

‘Home is something that changes and becomes different; maybe something you don’t even recognise as home any more. Neither the technology nor the person nor the building ever stay still, they are always moving, all the time.’

1383. – Sometimes too much attention is paid to devices:

139Everyone involved in telecare (studying it, designing it, implementing it) needs to think carefully about the complex social, emotional and physical environment of which the technology will be part.

1404. – The specificities of dementia need to be taken in account:

141Participants raised the point that we had spent quite a lot of time talking about technologies for people with dementia. This raised serious questions about risk and safety that are specific to people with cognitive decline. In responding to this point, the facilitator stated:

‘It comes back to what we talking about in one of our groups about people being allowed to take risks and live dangerously if they want to. If these technologies are in your home, do you still have the space to turn them off, to live in a way that’s considered dangerous?’

142Clearly, we need to think carefully about the balance between autonomy and risk/safety. Some participants felt that telecare sometimes concentrates too much on safety and the expense of other important issues.

1435. – We need to challenge normative ideas of care:

144We discovered in the workshop that there are problems discussing care in Europe because we lack a common vocabulary and a common understanding of what constitutes good care for older people.

1456. – The distinction between the corporate or organisational side of telecare and ‘care’ itself is not absolute:

‘I used to think that one was the dirty corporate side and the other was the nice, ethical, clean side, about caring, and what could be wrong with caring for people? But I think that actually they’re much [more joined up] and actually technology mediates that join… What it does is mediates, it doesn’t do anything in its own right. And it’s about process.’