Digital Welfare for the Third Age

Health and social care informatics for older people

Brian D. Loader, Michael Hardey, Leigh Keeble

• Publisher: Routledge
• Year: 2009
• ISBN:
  9781134052257
• Edition: 1
• Topic: Social Sciences
• Subtopic: Gerontology
• Index: Social Sciences

This book is about the ways digital technology can contribute to the welfare of older people. The Internet, mobile phones and other technologies have changed how we live and work. Such technologies also shape how services for older people are organised in ways that potentially place carers and older people at the centre of service provision. Telecare can make homes 'smart' so that they are more comfortable and less risky for people who can take advantage of devices that help make them independent members of their community.

Digital Welfare is part of the broader project in Britain and elsewhere to adopt new information and communications technologies (ICTs) to organise and deliver health and social welfare services. This includes mundane technologies like an alarm to call for help to complex telecare 'smart homes' and electronic patient records. The intended and unintended consequences of such new technologies must be explored if we are to benefit from these innovations. Based on recent research this book seeks to highlight and examine the new opportunities and dilemmas that confront older people and all those concerned with their welfare in the network society.

This edited collection provides original contributions from leading academics and researchers in the field to access the evidence for improved professional integration and user-centred health and social care services for older people arising from health informatics. Digital Welfare for the Third Age will be of interest to all those working with older people.

1 Introduction

Michael Hardey, Brian D. Loader and Leigh Keeble

This book is about older people, their homes, technology and data.

In any area where a range of professions, practitioners, state and voluntary agencies combine with technologies that may include a device connected to the Internet and a switch connected to an alarm to deliver services to users, there is considerable scope for confusion and procrastination. Terminology such as health informatics, telecare, telehealth, assistive technology, tele-medicine, e-health, telepsychiatry, smart homes, intelligent accommodation and so forth can be found scattered across the academic and policy literature. These categories reflect academic, practice and organisational differences as well as a tendency for the resulting specialism to develop a narrow focus around innovation and problem solving. Here, telecare will be used simply to refer to the broad range of devices, software and so forth that may be available to older people. Telemedicine enthusiasts have argued that it has ‘the potential of having a greater impact on the future of medicine than any other modality’ (DeBakey 1995: 3). In the light of medical developments since the 1990s, this claim appears rather exaggerated, but it denotes an underlying tendency to view new technology as central to the improvement of human health and sense of wellness. In addition, shades of technological determination, if not optimism, have left a legacy on the development of digital welfare.

Making connections between people, places and organisation

The delivery of health and social care in the UK has been transformed since the 1980s through a process of neoliberal marketisation with its emphasis upon consumerism, individual choice and responsibility. For older people and those with chronic illnesses, this challenged the tendency to view them as more or less passive recipients of care and medical expertise. Past notions of frailty highlight the construct of age and gender manifest in the label ‘little old lady’ (Arber & Ginn 1995). Social gerontologists remind us that people are ‘aged by culture’ as much as by ageing bodies (Gullette 2004). The publication, Choosing Health: Making Healthy Choices Easier (Department of Health 2004a), highlights a contemporary ideal-type service user in the guise of the informed consumer/citizen. This places information, in terms of both lived experience and abstract medical and other knowledge, at the centre of the delivery of care. In effect, older clients of health and social care are cast in the role of ‘knowing users’ of a coordinated system. This publication (Department of Health 2004a) frames the role of health and social services in terms of enabling individuals to generate their own health and well-being (Hughes 2004). Underlying structures of governance are visible here that reveal the New Labour project to forge a contractual relationship with individualised citizens (Fisher 2007). This has shaped a notion of informatisation that is predicated upon a seamless and systematic connection between different professional groups (e.g. doctors and social workers), different parts of the health and social care system (e.g. housing and social services) and different levels of government (national and local) across different geographical localities. In policy terms, the process also reflects a concern to write responsible users of public services into a pivotal role, so that they are seen as active agents in a health/care process rather than the object of intervention. Manifest in the Expert Patient programme outlined in Saving Lives (Department of Health 1999), those with chronic conditions are encouraged to engage in self-care and management while the state provides a menu of resources. A sense of empowerment can raise the self-esteem and quality of life for individuals as their embodied knowledge and experiences are placed at the centre of decision making that is shared with practitioners (Wilson 2001).This requires, as the NHS Information Authority (2004) puts it, that ‘patient centred care’ is the aim of the informatisation process. Congruent with such policies and practices, the informatisation process had to recognise the place of the service user as a partner with practitioners. Users had also to be recognised as participants within information systems instead of subjects to be represented in digital forms that potentially include x-ray images, patient records and assessments from social workers.

The national programme of computerising the health care system was initiated in the late 1990s when the NHS Executive set a target of 2005 for what was described as an ‘electronic healthcare record’ to be implemented across all Trusts (NHS Executive 1998). Previously, different parts of the health and social care system had made use of computerised records with varying degrees of complexity and success (e.g. The Wessex Regional Health Authority’s much criticised implementation of IT (Beynon-Davies & Lloyd-Williams 1999)). Past practices in relation to information reflect divides between primary and secondary care as well as different territories that are mapped out in boundaries between national and local accountability and budgets. The Wanless (2002) review of NHS finance, Securing our Future Health, marked the commitment to invest in information technology at increased levels in the light of ‘piece-meal and poorly integrated’ systems that existed at the time. In theory, some £214 million of central government funds were to be spent between 1991 and 2001 on various informatisation projects, but much of this was expended in other areas. A new national programme that would contract out the work was announced in 2002. The English National Programme for IT (NPfIT) was coordinated by a team of consultants and implemented through strategic health authorities.

Large-scale government computer projects have a problematic history. The National Audit Office examined the progress made in delivering the informatisation of health and social care against the original plans and costs of the programme (National Audit Office 2006). While the Audit Office noted that there had been major progress, it also highlighted failure to meet a number of significant milestones. In particular, the local delivery of the first phases of the NHS Care Records Service and the advanced integrated IT systems has experienced a series of serious delays. Deployment of the National Clinical Record anticipated in December 2004 was only available in pilot form by late 2006. While the software for Choose and Book was delivered on time, the take-up of the system to support patient choice was markedly slower than initially planned. In addition, the Audit Office noted that there were concerns voiced by NHS staff as to exactly what the programme was trying to achieve, when systems would be delivered and what they would do. NPfIT has since become Connecting for Health, which has been described as the ‘largest non military IT project attempted in the world’ (Bowers 2007).

Social work practice has assumed the presence of clients in the same way that medical practice has made assumptions about the role of patients. The modernisation of health and social services has brought into being the service user as well as the notion of service providers. Webster (2002) argues that the introduction of technology can shift the ‘medical repertoire’ so that the concept of the ‘patient’ is changed (see Webster 2002: Ch. 5). As noted earlier, at a broader level, there has been a policy transformation that has had an impact on the practice of medicine and social work in terms of service users’ position in the delivery of care. A consequence of this change is the development of interagency teams and the increasing role of partnership across professions (Glendinning et al. 2002). Despite changing terminology, the label ‘client’ or ‘patient’ remains in common currency among practitioners. However, rather than an individual, these categories should be seen as a relationship that is negotiated by all those involved. The 1996 Community Care (Direct Payments) Act was extended to older people in 2000 so that local authorities could provide cash in lieu of services (Glendinning et al. 2000). An older person may therefore become an employer of a care assistant as well as being seen as a patient by a general practitioner (GP) and as a client by a multidisciplinary team (Clark et al. 2004). Their relationships with carers, experts and agencies have apparently been transformed from that envisaged in the initial years of the welfare state as the largely grateful and compliant subjects of state aid. The contemporary service user’s need for information and the information needs of the different professionals that may be involved in facilitating and delivering care also become more complex and demanding of local and national data systems.

The National Service Framework for Older People (Department of Health 2001a) proposed the introduction of a single assessment process (SAP) for older people from April 2002. This timescale proved somewhat optimistic in view of the obstacles that were encountered. SAP is essentially about information, the gathering of it and the sharing of it between professionals working in health and social care, as well as potentially engaging directly with users. In theory, it should overcome patients’/clients’ experiences of giving similar information to any number of people/agencies involved in the delivery of services to them. Frontline professionals such as social workers and community workers who have been trained in the method can undertake the assessments with the expectation that local conditions and established working practices have shaped the form and implementation of SAP. This emphasis on local solutions to the implementation of SAP reflects traditional national/local government divisions that have resulted in different policies, practices and technologies being used in relation to the delivery of services to older people. NHS Connecting for Health and the Electronic Social Care Records Implementation Board are involved in an electronic version of SAP (eSAP), which builds on a number of pilot projects that have used laptop computers in meetings between older people and practitioners. This would allow data to be transferred and accessed while the practitioner and client discuss matters over the apocryphal cup of tea. However, a fully functioning electronic service delivery (ESD) system based around eSAP would appear to demand an information system that could be accessed by health and social care practitioners, patients/clients or carers, engage with the NHS Care Records Service (NHS CRS) and act as a resource for management. The intention to provide a ‘MyHealthspace’ as a ‘personalised point of entry to a patient portal through which a patient may access their own health information’ suggests that such a level of integration and access may be implemented.

Bodies, sensors and technology

Assistive technology has been defined as ‘an umbrella term for any device or system that allows an individual to perform a task that they would otherwise be unable to do or increases the ease and safety with which the task can be performed’ (Cowan & Turner-Smith 1999: 81). This highlights the way in which much of the general population makes use of such physically substitutive technology to some degree. However, as one of the authors notes later, this is rather all-embracing and might include eye glasses and contact lenses (Turner-Smith 2000). According to the Audit Commission (2004a: 12), telecare integrates ‘electronic assistive technologies’ with ‘environmental controls’, thereby enabling virtual visiting, reminder systems, home security and social alarm systems, thus forming a package that promotes the concept of the ‘smart house’. Older people who may benefit from such technology are a heterogeneous group with various degrees of abilities and impairments that do not simply translate into a ‘one-fit-all’ solution for a particular condition or need. As Dewsbury et al. (2004) observe, inclusive and person-centred design and implementation is called for rather than a deficit or ‘special needs’ approach.

Older bodies living with ill-health may, through SAP and other processes, be categorised as suitable for the use of body monitors and other devices. Such devices include ‘WristCare’, which monitors the wearer’s sleep patterns and movements, and more bodily invasive technologies that render the internal workings of the body into digital data. Devices designed for older people have in common a technology that lifts information out of the body, digitises it and makes it available to often remotely located software and experts. The monitoring of ‘vital signs’ represents a significant part of the telecare enterprise (Barlow et al. 2007). These technologies generate an insistent presence of the medical gaze that may liberate the body from risks and confinements and, at the same time, pathologise and impose new behaviours on the individual. Significantly, a new market has grown up around biosensor devices that make simple measurements of blood pressure and other parameters that can be easily interpreted by the wearer as part of a fitness regime. This self-surveillance of the body by those in pursuit of ‘body projects’ suggests that older people may also be keen to engage with a similar degree of self-regulation (Shilling 1993).

Mobile devices that have a global positioning system (GPS) capacity represent a modern take on the old location-dependent bell push alarm. What is essentially a mobile phone is marketed by one company as the ‘SKeeper’ or ‘wearable personal safety phone’ that allows ‘elderly people, children or lone workers to be in close contacts with their relatives or caregivers and get immediate help in case of need from a tele-assistance centre with 24/7 human responses. It enables two-way voice calls and text messages with an advanced alerting system for enhanced personal security. Fully programmable over the air via a user-friendly Web-based interface’ (http://www.medinfonews.com/ar/6y.htm). The European MobilAlarm project integrates GPS, mobile telephony and body-worn sensor devices with service centres and geographical localisation and alerting software to provide a Europe-wide mobile alarm and tele-assistance service (http://www.mobilalarm-eu.org). These and other projects use existing technologies such as the mobile phone and other network systems to create services dedicated to older people and those with chronic conditions in ways that potentially allow them mobility and an escape from the home that they had not previously enjoyed. Such technologies are not without ethical and other problems. For example, people with dementia, who may wander without knowing where they are, can be subject to surveillance through a location-sensitive device such as a radio frequency identity (RFID) tag that promises to enhance their safety and independence. Equally, it can be argued that such strategies infantilise the user and pathologise behaviours that are not predicable and routine, thus narrowing their scope for ‘normal’ modes of social interaction and movement.

Home is where the technology is

In the 1980s, there was much hype around the idea of the ‘telecottage’ that promised to help regenerate rural areas and transform mundane working lives by making it possible to work at a distance. However, smart homes might be capable of far more:

They walked down the hall of their soundproofed Happylife Home, which had cost them thirty thousand dollars installed, this house which clothed and fed and rocked them to sleep and played and sang and was good to them. Their approach sensitized a switch somewhere and the nursery light flicked on when they came within ten feet of it. Similarly, behind them, in the halls, lights went on and off as they left them behind, with a soft automaticity.

Bradbury (1995: 56)

Ray Bradbury’s short science fiction story neatly captures the seductive and subversive nature of the technologically rich home. Indeed, the ‘Happylife Home’ has resonances with the technology that it is claimed is used by the founder of Microsoft in his home:

Visitors to Bill Gates House are surveyed and given a microchip upon entrance. This small chip sends signals throughout the house, and a given room’s temperature and other conditions will change according to preset user preferences.

http://labnol.blogspot.com/2005/05/inside-bill-gates-home.html

However, these homes were designed to enhance and extend bodies that did not suffer from any loss of health or capacity. A number of demonstrator smart homes have been constructed in Edinburgh, York and Gloucester to show the potential of technology for different user groups. As Hanson, Osi povič and Percival (Chapter 7) argue, much work needs to be done in order to understand how older people use and interact with such technology. Technological interventions in the homes occupied by ageing or ill bodies have tended to restore previous bodily capacities or to contribute to the ability of an individual to remain independent by moving the site of body monitoring from the clinic to the home. Reductionist definitions of disability that focus upon ambulatory and/or mobility issues have too often shaped technology in the home (Imrie 2003). Indeed, the degree to which such initiatives are effective in terms of organisational costs is largely unclear (Lancet 1995; Roine et al. 2001). The cost to the occupiers of such smart homes may be their sense of privacy as surveillance systems, and especially those that include video devices, stream data to unknown software and human watchers (see Chapter 7). While there appear to be ever increasing amounts of digital information available, it is less clear whether the software and human recipients of the data are capable of making meaningful and nuanced observations and decision based on it. Percival, Hanson and Osipovic (Chapter 4) highlight the need for proper training and support for staff if such innovations are to be implemented effectively.

One of the earliest telecare systems in the UK was an integrated alarm system built into a 1948 sheltered housing scheme in Devon that sounded a bell in the warden’s accommodation (Parry & Thompson 1993). Fisk (1989) argues that this association with housing led to a ‘property rather than person-based perspective’ that resonates across the various shifts in the organisation of housing, social services and health care in the UK. Since then, technology has move on apace and witnessed the revolution led by the microchip so that the simple bell push has evolved into integrated telecare systems. The electro-mechanical devices of what has been seen as the first generation of telecare systems have been superseded by new ‘intelligent’ systems. Acting through sensors, the body and the home can be monitored so that an alarm is issued independently of any conscious effort on the part of the older person. The third generation of technologies includes ‘lifestyle monitoring’ such as devices that monitor when a fridge is used as well as recognising the possibilities that fast Internet connectivity can provide for older people (Doughty et al. 1996; Chapters 6 and 9). The potential of the Internet was highlighted in the Department of Trade and Industry (DTI) expectations for health care in 2020 when ‘… the first point of contact with health care will be through a “virtual” cyber-physician (CP). Accessed through a TV screen, the CP will replace other forms of triage such as the telephone and give access to information about other professionals, hospitals and other aspects of health care’ (Department of Trade and Industry 2000: 18). There is a danger in such expeditions into futurology as there is a temptation to extrapolate social and policy developments from assumptions about technological change.

The apparent virtualisation of care draws attention the to role of the Internet. Those over 55 years of age remain under-represented among Internet users in the UK (Dutton & Helsper 2007). For those for whom digital technology did not form part of their working lives, the computer may be unfamiliar, and there is a need for training and support of a kind provided by various ‘silver surfers’ and other schemes (Pilling et al. 2004). However, when access is utilised to make contact with family and friends as well as working on hobbies, this has encouraged a move to use the Internet for as much as seven hours a day according to one survey undertaken for a financial services group (AXA 2007). Featherstone (1995) suggests that ‘technological modes of interchange’ can transcend bodily limitations to ‘open up new possibilities for intimacy and self-expression’ (ibid.: 612). Indeed, some research has claimed that older people who are Internet users have a greater sense of psychological well-being than non-users and hence a sense of empowerment (Chen & Persons 2002; Chapter 9). Access to the Internet may bring many benefits, but the...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• List of illustrations
• List of contributors
• Acknowledgements
• 1 Introduction
• PART I Towards integrated service provision?
• PART II User-centred assessment and autonomy
• PART III Integrated user design
• Bibliography