Towards a wireless patient: Chronic illness, scarce care and technological innovation in the United Kingdom
Introduction
The second half of the twentieth century saw an unprecedented change in the epidemiological landscape of the advanced economies. Under the combined weight of improvements in understanding microbiology, sanitation, nutrition and public health, programmes of immunization and prevention, along with developments in laboratory medicine and pharmaceuticals, and the organization and delivery of health care, many countries have seen radical reductions in morbidity and mortality from infectious and acute diseases.
In the United Kingdom, there were many who assumed that this epidemiological shift would be reflected in a general reduction of the burden of disease, and after its inception in 1947 that the National Health Service (NHS) would see its role reduced as the health of the population improved (Cox, 1950). However, although the declining prevalence of disabling and often lethal infectious diseases has marked a triumph in public health, these diseases have been replaced by complexes of longstanding and chronic illness that place an increased burden of management and expenditure in the NHS (Topic Working Group, 1999). These are illnesses associated with improved longevity and despite continuing health inequalities, relative affluence. They fall into distinct categories (May, 2004): organic degeneration and systems failures including Type 2 Diabetes, many cardiovascular diseases, some cancers, many chronic respiratory diseases, skin lesions, and some neurodegenerative diseases; biomechanical pain and incapacity, including rheumatic and arthritic diseases of the joints, chronic musculoskeletal pain, and a variety of movement-related disabilities; and personal psychosocial problems including a colossal epidemic of depression and anxiety, and other mental health problems. In recent years, the problem of ‘chronic illness’ has run through policy, and new ways have been sought to reduce the burden of surveillance and management on the National health Service. Indeed, the patient is constructed in the policy through moves to organize ‘expertise’ and ‘resourcefulness’ into healthcare, either through educational initiatives, the formation of new kinds of patient-centred groups (including on-line communities) and by the emergence of health professionals with specific educational remits.
This discursive reconstruction of the ‘chronic’ patient has also been framed by technological changes, not simply in the content of patient-professional encounters, but in their production and mediation. It is the emergence of technologies of chronic disease management at a distance on which this paper focuses: for changes in the epidemiological landscape of the British health care system form the background to the emergence of systems of telemedicine, telehealthcare, and telecare and related domains of m-health and e-health. We, therefore, discuss some of the shifts that this has involved in thinking about telehealthcare systems as an innovation in health care delivery, and the move from seeing them as solutions to problems in interactions between citizens and hospital specialists, towards seeing them as solutions in managing chronic illness in the community. In Fig. 1, we briefly outline some of the different modes of telehealthcare.
The transition from acute disease to chronic illness has framed transitions in both the experiences of citizens who use health care services and the professionals who provide them. Importantly, for the former, it has often been experienced in terms of services under pressure, and constraints on access to scarce resources. Organizational responses to this, in the form of attempts to move some hospital outpatients provision into primary care through the use of nurse-led clinics and outreach services (Blue et al., 2001); or further developing services available in primary care by extending the nursing division of labour (Charles-Jones, Latimer, & May, 2003a) have made some impact. However, a key policy objective has been to shift at least some of the burden of routine illness management out of the formal health care systems altogether. Hence, the state has sponsored major programmes of spending on developing the ‘expert’ (Wilson, 2001), ‘resourceful’ (NHS Service Delivery and Organisation Research and Development Programme, 2003), ‘future’ (Kendall, 2001), or even ‘activated’ (Schrijvers, 2004) patient, who exercises ‘self-care’ and connects with health care resources purposefully and rationally.
In part, the move towards improving patient expertize and promoting ‘self-care’ reflects the chronic burden of monitoring and quality control work that arises from these groups of patients, and the demands and costs of services to accommodate them (Chapple & Rogers, 1999). But it also reflects attempts to mitigate medical paternalism and return control to people who are able to manage their own chronic illnesses, by improving their capacity to understand and monitor their own bodies, and to make ‘evidence-based’ decisions about management and help seeking. Pressure to work in this direction has from several policy directions, notably from organizations that represent people with health problems themselves, but the medical profession itself has also been implicated in this process, as it has sought ways of reducing the burden of routine care, and particularly relieving itself of the perceived problems of ‘inappropriate demand’ (Mark, Pencheon, & Elliot, 2000) and ‘dependent’ patients (Wilson, 2001).
Section snippets
Studies and methods
This paper draws a programme of ethnographic and other studies undertaken since 1997 which have examined the development (May & Ellis, 2001), implementation (May, et al., 2001), evaluation (May, Mort, Williams. Mair, & Gask, 2003a) and experience (Mort, May, & Williams, 2003) of telemedicine systems in clinical practice in the United Kingdom. Individual studies are described in Fig 2. The bulk of these data has been obtained by means of qualitative research techniques, including ethnographic
From the global clinic to controlled admissions
In 1992, a speaker at an NHS seminar on the new field of telemedicine asserted ambitiously that these new systems would ultimately be as important to medicine ‘as the discovery of antibiotics’; in 1998, a doctor attending a Department of Health seminar wryly observed that, ‘if it is called telemedicine, it means it doesn’t work’ the implication being that once a system of practice was fully accepted and integrated into medical work it needed to be called nothing but medicine; and by the summer
The shift to a wireless patient: interactivity, informatics and chronic disease management
To find examples of throughput and trajectory management technologies that can be integrated into clinical practice and that work at a distance, we have to shift our attention away from the narrowly defined field of telehealthcare that the ‘telemedicine’ community has focused on. For example, telephone triage, both on a national scale through NHS Direct (Donaldson, 2000) and through local providers (Charles-Jones, May, Latimer, & Roland, 2003b) has rapidly emerged as a potential means of
Conclusion
One of our respondents argued that the key problem for proponents of telemedicine was not, as others had argued, that fragmented developments had lacked solid support from policy-makers, or that the demand for evidence-based practice had tied down telemedicine systems in long and inappropriate randomized controlled trials, or even that problems of integration within existing services had intervened to prevent telemedicine becoming a practical proposition. Instead, he saw these as symptoms of a
Acknowledgements
The research reported in this paper was supported by the UK Economic and Social Research Council's Innovative Health Technologies Programme (Grant L218 25 2067). We thank participants at a seminar on Healthy Innovation at CRIC, University of Manchester in July 2004 (notably Professors Andrew Webster and Stuart Blume), and at the BSA Medical Sociology Group York Conference in September 2004 (notably Professors Mildred Blaxter, Mary Anne Elston and Anne Rogers) for their helpful comments on
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