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Towards a wireless patient: Chronic illness, scarce care and technological innovation in the United Kingdom
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Social Science & Medicine 61 (2005) 1485–1494 www.elsevier.com/locate/socscimed
Towards a wireless patient: Chronic illness, scarce care and technological innovation in the United Kingdom Carl Maya,, Tracy Fincha, Frances Mairb, Maggie Mortc a
Centre for Health Services Research, University of Newcastle, UK b Department of Primary Care, University of Liverpool, UK c Institute for Health Studies, University of Lancaster, UK Available online 12 May 2005
Abstract ‘Modernization’ is a key health policy objective in the UK. It extends across a range of public service delivery and organizational contexts, and also means there are radical changes in perspective on professional behaviour and practice. New information and communications technologies have been seen as one of the key mechanisms by which these changes can be engendered. In particular, massive investment in information technologies promises the rapid distribution and deployment of patient-centred information across internal organizational boundaries. While the National Health Service (NHS) sits on the edge of a £6billion investment in electronic patient records, other technologies find their status as innovative vehicles for professional behaviour change and service delivery in question. In this paper, we consider the ways that telemedicine and telehealthcare systems have been constructed first as a field of technological innovation, and more recently, as management solutions to problems around the distribution of health care. We use NHS responses to chronic illness as a medium for understanding these shifts. In particular, we draw attention to the shifting definitions of ‘innovation’ and to the ways that these shifts define a move away from notions of technological advance towards management control. r 2005 Elsevier Ltd. All rights reserved. Keywords: Telehealthcare; Chronic illness; United Kingdom; Technologies
1. 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 Corresponding author. Centre for Health Services Research, University of Newcastle upon Tyne, 21 Claremont Place, Newcastle upon Tyne, NE2 4AA, UK. Tel.: +44 0 191 222 7046; fax: +44 0 191 222 6043. E-mail address: [email protected] (C. May).
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
0277-9536/$ - see front matter r 2005 Elsevier Ltd. All rights reserved. doi:10.1016/j.socscimed.2005.03.008
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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 Mode Synchronous (Interactive) Closed-circuit TV/Videoconferencing
Asynchronous (Store-andforward) Email
Synchronous (Noninteractive) Remote monitoring
Asynchronous/ Synchronous (interactive) Mobile (M-Health)
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 ehealth. 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
Mainly Telemedicine: Synchronous systems are used to transmit live sound, images and data, with or without parallel videoconferencing. Here, a range of health professionals including nurses can video-conference with each other or with patients, and by using proxies can undertake and monitor a range of clinical tests or monitor vital signs.
Operational contexts Psychiatry/psychology Cardiology Trauma/emergence Respiratory care
Mainly telemedicine: Asynchronous (storeforward) systems record, store and then forward images and other data for subsequent review. Put simply, clinical data is captured − either by specially modified digital cameras or other medical equipment − and then usually emailed tomedical professionals who use it for diagnostic or management decision-making. Mainly telecare: synchronous systems are used to monitor specific potentials (location, vital signs, syncope, movement) using sensors that communicate with a remote base or call centre. Response to signal may be an automated alarm or telephone call to a carer or family member, or an alert to emergency services.
Dermatology Radiology Pathology
Mainly self-care: localized and personalized systems mounted in mobile phones, personal digital assistants, personal computers. May be wireless or hard wired. Perform personal record keeping and calculations of test results (e.g. blood sugar, cholesterol). Can communicate with remote call centres or home base-stations. Can provide data for professional review.
Personal monitoring of chronic conditions (diabetes, cardiovascular and respiratory disease).
Fig. 1. Modes of telehealthcare.
Home telecare. Monitoring safety of vulnerable older people. Surveillance of nursing home residents.
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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 ‘selfcare’ 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
Study TM1 1997-99
TM2 19992000
TM3 2000-02
TM4 2002-04
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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).
2. 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 fieldwork, semi-structured interviews, citizens’ panels, and documentary analysis. Other data include survey research and semi-structured telephone interviews with users of a teledermatology service, and web-based questionnaires addressed to a
Research Question How is telemedicine Developed and Implemented in clinical Practice? Ethnographic study
Study Group Clinicians, managers and technical experts (n=47) developing three clinical services. Patients (n=20) using a telepsychiatry service.
Data Transcripts of semistructured interviews; field-notes of meetings and systems in use; archive of correspondence, emails, and other service documentation
How do service users respond to a community teledermatology service?
Patients referred to a primary care teledermatology service (n=141).
Survey data on association between subjective quality of life status and satisfaction with survey; transcripts of semi-structured telephone interviews with subgroup (n=20)
What factors promote or inhibit the effective evaluation of telehealthcare systems?
Researchers, clinicians, managers and technical experts (n=38) evaluating seven telehealthcare services.
How are risk, governance and innovation understood in the context of telehealthcare development?
Policy makers, clinicians, IT professionals, managers and service users (n=70)
Transcripts of semistructured interviews; meetings and presentations; correspondence, emails, and other service documentation Transcripts of semistructured interviews; group interviews (n=30); and citizens’ panel (n=10); free text data derived from webbased questionnaire (n=30); field-notes of meetings, conferences and workshops (n=20).
Archived qualitative data from TM1-3
Fig. 2. Study questions, respondents, and data collected.
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wide constituency of telemedicine clinicians, technical experts and policy makers. In each study, interviews have been audio-taped and transcribed. Transcripts have then been analysed according to the precepts of the constant comparative method set out by Strauss (Strauss, 1987). Other data, including field-notes and documentary material have been similarly treated. Over a period of seven years, a very considerable body of data has been accumulated, based on interviews with NHS policy-makers, managers, clinicians, manufacturers, technical experts, service users and others. Some respondents have been interviewed several times, and a small number have appeared—as key informants—in more than one study. In this paper, we present extracts from qualitative data collected in our four studies to illustrate our account. We have edited interview transcripts to ensure the anonymity of respondents, services and institutional contexts. This sometimes makes for unwieldy transcription, but is a necessary condition of our work. We also draw on field-notes or transcripts of a number of occasions when proponents of telemedicine systems made public presentations, at conferences or other meetings. Where we refer to such occasions, we also name the speaker.
3. 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 of 2003, one of telemedicine’s leading proponents could remark in a private meeting that ‘even the term telemedicine is a turn off, and we need to start calling it modernization’. This reflects a series of shifts in the way that ‘telehealthcare’ is politically and practically understood by its proponents in the NHS. Our point of departure is to address the difficult problem of what has happened to ‘telehealthcare’ as a field of innovation, locating shifts in the conceptualization of telehealthcare services in changing policies around service provision and modernization. Central to our analysis is the way in which telehealthcare has become one of several organizing technologies that are used to define, organize and sustain territories of professional practice, and which are configured in the modernization of the National Health Service. In her contribution to an adjournment debate on telemedicine in the House of Commons in May 2000, Gisela Stuart
MP, then Parliamentary Under-Secretary of State for Health, set out the political problematic of these new systems of practice. Information is the key to the modern age. The new information age offers possibilities for the future limited only by the boundaries of our imaginations. (y) Before I explore the use of telemedicine further, let me explain the wider need for change. The Government is committed to building a new NHS which is faster, fairer and more convenient for patients, and fit to face the challenges of a new millennium. (y) Telemedicine and telecare will play a vital part in modernization. They are not new medical disciplines but tools that allow services to be delivered in a new way. They will provide services for patients, when and where they need them. (y) Telemedicine and telecare have the potential to transform a patient’s experience of the health service by reducing inconvenience, shortening journeys, and avoiding unnecessary referrals. They also present new opportunities to deliver and configure services and, as my Hon. Friend [Dr Howard Stoate MP] has said, new opportunities for professional development. I recognise what he has said about the need for changes in attitude and work practices if telemedicine and telecare are to flourish. If we are to realise their potential, we must be willing to communicate and work across professional and organisational boundaries. (Hansard [Commons], 4 May 2000: columns 392–396). The boundary of the millennium, then, is that of the information age. In Ms Stuart’s account, telehealthcare was not a new clinical discipline, but is transformative of patients’ experiences by subtracting problems of time and space from the organization and delivery of health care. Equally, it promised transformation of the experiences and practices of professionals, by demanding changes in the ways that they understood and organized their work. Each of these territories has formed one of the territories in which innovation in telehealthcare has been worked out. Ms Stuart’s perspective is one that has been echoed systematically by both clinical and policy proponents of telehealthcare. Policy initiatives from government and from NHS managers have laid emphasis on modernization through informatics. The central policy statements—Information for Health (National Health Service Executive, 1998) and Building the Information Core (NHS Information Policy Unit, 2001)—both focus on new technologies being used to provide new kinds of service that are more responsive to public needs, and that subtracts space and adds speed to the provision of health care. In Information for Health removing distance from health care was
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framed in terms of distances within the organizational and professional territories of the health service.
shortfall in dermatologists this wouldn’t matter once teledermatology had got off the ground.
Opportunities in the field of telemedicine will be seized to remove distance from healthcare, to improve the quality of that care, and to help deliver new and integrated services. GP’s will be able to send test readings or images electronically to hospital specialists many miles away and in the same way receive results and advice more quickly (National Health Service Executive, 1998)
Indeed, dermatology seems an ideal clinical discipline to work out an image-based model of medical practice (Eedy & Wootton, 2001). However, developments in the UK have shifted from doctor-led to nurse-led encounters, and this is an important move, because it reflects shifts in the professional authority of those who enter the encounter and because this has consequences for the division of clinical labour and the kinds of work that professionals do. Diagnostic work remains important in teledermatology, and so we see two parallel systems at work. Firstly, the use of emailed digital images between family doctors and hospital based dermatologists. This is low volume work, where advisory decisions about diagnosis, referral or local management can be made. Secondly, nurses have gradually found their remits extended to organize and enact the collection of digital images, and manage the immediate clinical encounter with the patient before transmitting images on to referring doctors. This is protocol driven work, and elsewhere we have discussed in detail how working out protocols in practice was run through with difficulties for a dermatology service because it undermined existing hierarchies and professional roles (Mort et al., 2003). The importance of protocol driven work cannot be underestimated, however, because it reflects wider tendencies to seek ways to standardize and homogenize clinical decisions and practices (Berg, Horstman, Plass, & van Heusden, 2000). The effect of such standardization, of course, is to secure the basis for increased surveillance and control of professional work—a shift that runs through contemporary British debates about the place of ‘clinical governance’ in health policy and about the management of the professions themselves (Davies, 1995; Harrison, 1999). An NHS IT manager’s account makes this clear:
The e-topian vision running through Information for Health and of those who saw in telemedicine the basis for a global clinic and the technological ambitions of Gisela Stuart need to be placed in the context of structural obstacles to a global clinic in which time and space ceased to matter (Sinha, 2000), and where the scarcity of specialist clinicians was overcome by videoconferencing. But even in experimental settings, that was threatened by the difficulties of scheduling encounters and integrating them into ‘real’ NHS services (MacFarlane, Harrison, & Wallace, 2001). Organizational integration has been the principal reported problem for telemedicine in the NHS. But other work has shown how, across systems that provide real-time contact between doctors and patients, normal patterns of interaction in the clinical encounter are threatened or disrupted (May et al., 2001; Miller, 2001). Normalization in the clinic was threatened by the tendency of telemedicine systems to be fragmented experiments running parallel to ‘real’ services, but also by the absence of powerful policy sponsors (May et al., 2003b). If real-time interactivity in electronically mediated doctor–patient encounters has been proved difficult to implement, evaluate and accommodate in the NHS, image based diagnostic services have become possible. Teleradiology and teledermatology are two important areas of ‘store-forward’ development. But in radiology, the notion of teleradiology has long since vanished, since the images that radiologists work with are already often produced in the form of electronic images, and moved around on disk or by email. Teleradiology normalized rapidly, once common technical standards for images agreed (Thowarth et al., 1994). Teledermatology, our second example of mediated medicine, has been more problematic. One consultant dermatologist told us that: I mean, it really was Blair1 and everybody at the NHS (y) and the message came very strongly from government that despite the fact that there was a 1 The Rt Hon Tony Blair MP PC, at that time Prime Minister of the United Kingdom.
TM4 WBQ17: Using digital communications makes it easy to follow the audit trail. Recording voice, digital images and tracking access to records—and having accurate legible recordings reduces the risk of (y) litigation, instability of infrastructure, lack of interoperability, decision support software taking away decision making from clinicians. (y) Protocols are drawn up, e-ICPs are developed involving a wide range of clinical staff. This is an inclusive and holistic approach that ultimately benefits the patient, it can speed up diagnosis, there needs to be assurances—of a human element in the process. The central feature of teledermatology is that it is employed in relation to ‘non-urgent’ cases, and especially in the management of chronic conditions with recurrent exacerbations, like Psoriasis. While there is a shortage of consultant dermatologists in the UK this is
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not so severe that people presenting with sinister signs cannot be rapidly seen in hospital clinics. Such patients require managing through the health care system in two phases, first by work that defines their point of entry and priority for service (triage) and second by work that moves them along a patient pathway or trajectory. Teledermatology is not alone in moving towards structured, protocol-driven services. Work practices organized around standardized triage protocols are found in nurse-led synchronous services too. For example, a service (Hibbert et al., 2003) that offers people with Chronic Obstructive Pulmonary Disease (COPD) interactive contact with a specialist nursing service to monitor symptom stability was explicitly intended to control hospital admissions and readmissions for exacerbation events. Similarly, in the case of a telepsychiatry service for people with anxiety and depression, the nurse who managed and organized mediated interactivity was equally explicit about the motivations that underpinned the introduction of a telehealthcare system. CRM: You’re going to be doing this with quite a specialized group of patients aren’t you? S2RA2-(TM3): We’re only using this for referrals. The other problem is that people are too keen to admit, so that [S2-consultant1] and [S2-consultant2] can screen for admissions, so it might be that the [professionals on the network] might be happy that they have been spoken to and a joint position maybe has been (reached), and that will stop a lot of admissions. CRM: OK, so it’s going to be about controlling access? S2RA2-(TM3): It’s going to be about controlling access. Yes. Access: because the big problem they have in here is once the patient gets a bed here they don’t want to leave. They want to keep coming back. And discharge planning is another thing because a lot of people don’t travel up for discharge planning, so therefore they don’t know what should be done for discharges education wise, so that’s going to be important. Telehealthcare services can be used to lift patients out of traditional services, perform triage and define their clinical trajectory, before reinserting them in conventionally organized pathways of care. These are means of controlling points of entry into the hospital department, and managing patient waiting times and throughput. Here, existing telehealthcare systems permit expert surveillance of the stability of organic systems and the trajectory of illness, through routine tests and examinations, and by sustaining relationships with patients at a distance.
The move from an e-topian vision of telemedicine delivering electronically mediated diagnostic clinics, in which patients and professionals encounter each other in real-time has been displaced. Hopes that telemedicine would undercut geographical inequalities in resource allocation and service provision, and would subtract the problem of waiting time from service experiences, by efficiently redistributing clinical services across the epidemiological terrain have barely been fulfilled. However, within the shifting development of telehealthcare local technologies of control have been developed, as part of the wider apparatus of demand management in the NHS.
4. 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 shifting some routine work away from primary care clinicians. In the same period, ehealth—using web-based resources—has also become increasingly prominent (Kendall, 2001). But while telephone triage (using an ‘old’ technology) and e-health (using a very new one) seem to have prospered, telehealthcare—systems of the kind that we have discussed above have not been adopted on a significant scale despite considerable political support, and despite the efforts of policy and clinical champions. The comparison between these three systems of practice is in some important ways unfair: telephone triage delivers advice, not care, and e-health delivers information— often undifferentiated and difficult to interpret—while telemedicine systems are oriented towards clinical practice and are intended to deliver diagnosis and disease management. While the potential of telemedicine to secure easier access to health care for service users is not in doubt, in practice it seems to be being used in a variety of ways that are about reconfiguring clinical workload, and particularly about trying to manage and regulate demand for some kinds of service. Many of these interventions are very modest in scope. In part, this is a matter of technological possibilities being realized as ‘hardware’ is developed and organizational structures (like call centres) are invented to accommodate these new possibilities. However, just as the invention of the call centre has reconfigured the distribution of work and costs, and has reconfigured
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social relations between customers and companies, so too do these new systems of organizing clinical practice. Information and communications technologies are bound together in the British context in a program of developments (the NHS National Programme for Information Technology) that is the largest single development and implementation program in the history of Informatics. So the decline of telemedicine and its displacement by telehealthcare needs to be contextualized in a wider field of colossal technological ambitions. Telehealthcare is only one means by which new kinds of operational efficiency can be brought into play, and in which these possibilities are opened up. Now looking at telemedicine and telecare, we include telecare very much in this these days because one of the ways in which services are going to develop is delivery of services in the home, and home care monitoring we see is going to be very much a growth area over the next few years, because it does allow us potentially patients can be discharged early because they can be monitored at home, assuming the home conditions are correct (Preston, 2001). Being ‘much more modern’, as Peter Preston described it, is located in relation to a new kind of citizenship—and elsewhere this is manifest in a notion of the ‘future patient’ (Kendall, 2001), who accesses health care provision by a variety of ‘non-traditional’ means and is empowered by these new forms of access. One interpretation that we can place on these public discourses of technological ambition is that it is not simply the provision of health care that is to be modernized, but also the user of these services. The commissioning brief for an NHS research programme on ICTs and telehealthcare makes this clear. The SDO programme is also interested in the impact new technologies have on the relationships between users and professionals. This may include their role in changing the dynamic between user and professional. Many current concepts such as the ‘‘expert patient’’ and the ‘‘resourceful patient’’ and innovations in decision support techniques are related to technology-enhanced changes in the balance of power between users and professionals (NHS Service Delivery and Organisation Research and Development Programme, 2003) Political statements, whether by clinical champions of new systems of practice or their political supporters, represent some of the surface shifts of telehealthcare technologies. In fact the real shift has been in the territories in which telehealthcare is worked out. Realtime clinical interactivity between doctors and patients, for example, has collapsed in the face of its intrusion into the organizational structures and professional
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arrangements of the hospital outpatients’ clinic, although it remains an important component of telenursing. So, the territorial shifts that we have so far described, from telemedicine through telehealthcare to telecare, have meant that the question of distance and scarcity itself shifts its focus. In telecare, the distances that are bridged are no longer within the formal institutions of the health care system, but between the patient and provider. One senior NHS manager was clear that the burden of responsibility was being moved in that direction. TM4 I23: (y) The other major players are the telecoms companies, BT, Orange and Vodaphone. All three are supporting mobile based applications for individual monitoring and there are some very nice applications around, which I think you know (y) I think it’s a major area, because the telcos—I mean the mobile phone companies—want to support anything that uses mobile phones. And to some extent the NHS agenda is to push care back to the patients, say ‘well, it’s your life, it’s your responsibility’. (y) So, you know, the mobile operators and some of the telemeds companies are starting to look at that sort of application. I’ve been saying to them, ‘fine, and if you can incorporate digital television then you may be able to piggyback onto some [government] funding schemes. TF: When we were talking about innovation before (y) we talked specifically about the technology and people say it’s part of it, but not the only thing. TM4 I23: (y) Companies and organizations which may drive innovation are probably the companies calling for people to provide chronic disease management. (y) It may be that they will be the people who will take up mobile based applications—the sort of BT type call centre care that they’ve piloted in [name of place] and whatever—and so the chronic care providers may drive innovation as contractors to PCTs. The move to reframing the end-user of telehealthcare systems, then, has been accomplished by ‘rebranding’ some telehealthcare systems as chronic disease management solutions. Here, the problem of demand management is embedded in National Service Frameworks for chronic diseases, and in relation to the major burden of chronic illnesses where surveillance of vital signs, blood chemistry and oxygenation is a key part of primary care work. Proponents of new systems claim that this is possible, and are pressing forward with systems design and developments that link these policy objectives. Presenting Doc@HOMEs. In response to positive patient feedback during recent clinical trials of its Doc@Home remote health monitoring service, Docobo has enhanced its service to support the needs of patients suffering from Diabetes, Chronic
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Respiratory Failure (CRF), Chronic Heart Failure (CHF) and Asthma. The development of Doc@HOMEs was made possible with the help of a grant of h1.1 million from the Information Society Technology (IST) Programme of the European Union’s Fifth Framework Programme (FP5). It is now set to improve the quality of life of thousands of people, including the elderly and disabled, freeing up time currently spent with doctors and hospital visits. This in turn will help ease the pressure on the family doctor. The trials have proven that Doc@HOMEs gives the patient a sense of control over their condition and allows their medical carers to stay ahead of the disease. It also provides education about the disease and its risk factors, and supports lifestyle modification strategies that need to be introduced to help manage the condition. In the case of CRF and Asthma, the team caring for the patient can monitor symptoms such as breathlessness, coughing and wheezing, and detect early signs of degradation in order to avoid an acute event. For CHF, crucial symptoms such as night time urination, swelling of the ankles, palpitations, fatigue and breathlessness can be remotely monitored. (Docobo PLC, 2004). The shift here is to monitoring units reading data outputs—at the high end of the spectrum, from wireless devices—but more usually from links using conventional domestic telephony. Once again, these employ protocol driven nursing service working from call centres. Both patients and professionals are reconfigured by these shifts, because both become implicated in collecting and managing the transfers of routine performance data between different end-users. This involves routine and highly determinate patterns of work that extend over lifetime illness careers, and so impact on the configuration of divisions of labour in health care. One important way in which they do this is by incorporating the ‘expert’, ‘resourceful’ or even ‘activated’ patient into the division of health care labour itself. So emergent systems of telecare permit extended divisions of labour in health care, but they do so in ways that are increasingly amenable to external regulation, quality control, and governance. Data outputs about blood chemistry, or about other symptoms, extend across domains of interpretation and analysis. It is important to be clear that the performance to be managed here is that of the chronically ill themselves, and the quality of their selfcare is called into question as these new modes of domestic surveillance become operationalized.
5. 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 deeper structural problem, which was the absence of a ‘suitably substantial transport layer’ (TM4 I23), a set of everyday utilities into which integration work itself could be embedded, and which would act as a venue for both policy-related spending and evidence-production. This may be so, but arguments that one form of technology fails to normalize because another is absent are hard to sustain. Some forms of telehealthcare service delivery have normalized, once simple agreements about technical standards have either been locally or nationally constructed. We can see this is the case of teleradiology, and the case of some teledermatology services. Some services do have transportable standards that permit them to move between organizational destinations for their work. Instead, it may be that the kinds of doctor–patient interactions that the ambitions of telemedicine’s proponents were formed around were the source of the problem. These were aimed at proximal relations, bring doctor and patient closer together. This followed a wider pattern, drawn from developments in the US (Whitten & Collins, 1997) where populations were underserved by health care providers because of spatial inequalities in the distribution of health care, or because populations lacked the financial resources to buy appropriate health care in a market place (Grigsby et al., 2002). Bringing doctors and patients closer together in routine, nonurgent outpatient services was, however, to move in the wrong direction. The ambitions of service providers, clinicians and politicians were united in a technocratic or e-topian vision of possibilities for improved access. But like other interventions intended to improve access, these kinds of services actually increased problems of demand management at a time when an alternative policy stream was identifying the expert patient as one who worked to organize and deliver self-care and so both reduced demands on the formal health care system and was kept at a distance by intervening semiautonomous patient groups and integrated nursing services. The shift from telemedicine to telecare provides a technological framework for the domestic management of chronic illness because monitoring performance data enables quality control over the expert patient’s self-care and illness management, while its in-built parameters—which frames the patient as a minimum data set—govern points of entry into formal care systems. The interactions that are formed through these systems of practice are framed through distal relations.
ARTICLE IN PRESS C. May et al. / Social Science & Medicine 61 (2005) 1485–1494 Interactivity Teletriage: including protocols or decisionmaking rules operationalised by health professionals or call centre staff. These systems determine and control the patient’s point of entry into NHS provision, or offer advice and guidance about self-care practices or alternative provision.
Informatics Information spine: including clinical governance systems, treatment guidelines, protocols, electronic health records, picture archiving and transmission. These organize, store and deliver information about patients’ histories and treatment modalities and about the organization and costs of care.
Telecare: systems that link professionals and patients for the purposes of organizing and delivering clinical information about symptom stability and management trajectories of specific health problems to professionals, and management information and advice to patients.
E-health: including intra and internet resources that permit undifferentiated access to information about health, illness, treatment and care, and to web-based chat or bulletin boards through which they can communicate with others.
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Fig 3. Technologies that construct proximal and distal patients.
We, therefore, find ‘service users’ framed in four interconnected ways in the rhetoric of policy. They are:
expert (know their illness and its management); resourceful (employ self-care and do not make ‘inappropriate’ demands);
activated (technologically connected), and; future (‘appropriate’, ‘informed’, ‘organized’, distal). As new systems come on stream and become routinely embedded in everyday service delivery, they offer new points at which power and knowledge relations between citizens and service providers can be constituted and contested. Embedded within them are the passage points where expert or resourceful patients might exercise their expertize or resourcefulness in attempts to claim attention or command resources. In this context, telecare systems offer new modes of management control to the NHS, concrete social and clinical definitions of appropriateness of admission to formal care at a time when commanding ‘appropriate’ service use is a political as well as a practical problem, and where primary and secondary care providers are sometimes at odds with each other on what those points of contact are (Rogers, Hassell, & Nicolas, 2001). It is at this point that integration comes to matter very much. The NHS itself is currently manoeuvring towards a very complicated and enormously ambitious programme of informatics development—in which database design and implementation on its own is intended to develop systems ten times larger than those owned and employed by the US Department of Defense in a matter of 5 years. How different Telehealthcare and Telecare practices are integrated into these new structures is the key to their future success. In Fig. 3, we suggest some points of contact between them. Integration is therefore the key to understanding the problem of telemedicine’s (mediated interactivity between doctor and patient) shifts, first to telehealthcare
(triage, management and control by various health professionals), and then into the more diffuse field of telecare (remote data transfers in chronic disease management). Telecare has potential in the current organizational structures of the NHS because it can be provided through systems that are bracketed off from local direct providers of clinical services—the doctors and nurses working on the ground—and provided through call centres and structures that maintain distances. Systems originally intended to perform medicine at a distance may now find their place in practices intended to keep medicine at a distance.
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 earlier drafts of the paper. We are most grateful to the necessarily anonymous participants in our studies for their time and candour; and to Cheryl Wiscombe for secretarial support of this study. The Royal Society of Medicine and the British Association of Dermatologists, amongst others, kindly provided us with audio-recordings of their meetings, for which we are very grateful indeed.
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Social Science & Medicine 61 (2005) 1485–1494 www.elsevier.com/locate/socscimed
Towards a wireless patient: Chronic illness, scarce care and technological innovation in the United Kingdom Carl Maya,, Tracy Fincha, Frances Mairb, Maggie Mortc a
Centre for Health Services Research, University of Newcastle, UK b Department of Primary Care, University of Liverpool, UK c Institute for Health Studies, University of Lancaster, UK Available online 12 May 2005
Abstract ‘Modernization’ is a key health policy objective in the UK. It extends across a range of public service delivery and organizational contexts, and also means there are radical changes in perspective on professional behaviour and practice. New information and communications technologies have been seen as one of the key mechanisms by which these changes can be engendered. In particular, massive investment in information technologies promises the rapid distribution and deployment of patient-centred information across internal organizational boundaries. While the National Health Service (NHS) sits on the edge of a £6billion investment in electronic patient records, other technologies find their status as innovative vehicles for professional behaviour change and service delivery in question. In this paper, we consider the ways that telemedicine and telehealthcare systems have been constructed first as a field of technological innovation, and more recently, as management solutions to problems around the distribution of health care. We use NHS responses to chronic illness as a medium for understanding these shifts. In particular, we draw attention to the shifting definitions of ‘innovation’ and to the ways that these shifts define a move away from notions of technological advance towards management control. r 2005 Elsevier Ltd. All rights reserved. Keywords: Telehealthcare; Chronic illness; United Kingdom; Technologies
1. 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 Corresponding author. Centre for Health Services Research, University of Newcastle upon Tyne, 21 Claremont Place, Newcastle upon Tyne, NE2 4AA, UK. Tel.: +44 0 191 222 7046; fax: +44 0 191 222 6043. E-mail address: [email protected] (C. May).
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
0277-9536/$ - see front matter r 2005 Elsevier Ltd. All rights reserved. doi:10.1016/j.socscimed.2005.03.008
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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 Mode Synchronous (Interactive) Closed-circuit TV/Videoconferencing
Asynchronous (Store-andforward) Email
Synchronous (Noninteractive) Remote monitoring
Asynchronous/ Synchronous (interactive) Mobile (M-Health)
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 ehealth. 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
Mainly Telemedicine: Synchronous systems are used to transmit live sound, images and data, with or without parallel videoconferencing. Here, a range of health professionals including nurses can video-conference with each other or with patients, and by using proxies can undertake and monitor a range of clinical tests or monitor vital signs.
Operational contexts Psychiatry/psychology Cardiology Trauma/emergence Respiratory care
Mainly telemedicine: Asynchronous (storeforward) systems record, store and then forward images and other data for subsequent review. Put simply, clinical data is captured − either by specially modified digital cameras or other medical equipment − and then usually emailed tomedical professionals who use it for diagnostic or management decision-making. Mainly telecare: synchronous systems are used to monitor specific potentials (location, vital signs, syncope, movement) using sensors that communicate with a remote base or call centre. Response to signal may be an automated alarm or telephone call to a carer or family member, or an alert to emergency services.
Dermatology Radiology Pathology
Mainly self-care: localized and personalized systems mounted in mobile phones, personal digital assistants, personal computers. May be wireless or hard wired. Perform personal record keeping and calculations of test results (e.g. blood sugar, cholesterol). Can communicate with remote call centres or home base-stations. Can provide data for professional review.
Personal monitoring of chronic conditions (diabetes, cardiovascular and respiratory disease).
Fig. 1. Modes of telehealthcare.
Home telecare. Monitoring safety of vulnerable older people. Surveillance of nursing home residents.
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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 ‘selfcare’ 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
Study TM1 1997-99
TM2 19992000
TM3 2000-02
TM4 2002-04
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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).
2. 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 fieldwork, semi-structured interviews, citizens’ panels, and documentary analysis. Other data include survey research and semi-structured telephone interviews with users of a teledermatology service, and web-based questionnaires addressed to a
Research Question How is telemedicine Developed and Implemented in clinical Practice? Ethnographic study
Study Group Clinicians, managers and technical experts (n=47) developing three clinical services. Patients (n=20) using a telepsychiatry service.
Data Transcripts of semistructured interviews; field-notes of meetings and systems in use; archive of correspondence, emails, and other service documentation
How do service users respond to a community teledermatology service?
Patients referred to a primary care teledermatology service (n=141).
Survey data on association between subjective quality of life status and satisfaction with survey; transcripts of semi-structured telephone interviews with subgroup (n=20)
What factors promote or inhibit the effective evaluation of telehealthcare systems?
Researchers, clinicians, managers and technical experts (n=38) evaluating seven telehealthcare services.
How are risk, governance and innovation understood in the context of telehealthcare development?
Policy makers, clinicians, IT professionals, managers and service users (n=70)
Transcripts of semistructured interviews; meetings and presentations; correspondence, emails, and other service documentation Transcripts of semistructured interviews; group interviews (n=30); and citizens’ panel (n=10); free text data derived from webbased questionnaire (n=30); field-notes of meetings, conferences and workshops (n=20).
Archived qualitative data from TM1-3
Fig. 2. Study questions, respondents, and data collected.
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wide constituency of telemedicine clinicians, technical experts and policy makers. In each study, interviews have been audio-taped and transcribed. Transcripts have then been analysed according to the precepts of the constant comparative method set out by Strauss (Strauss, 1987). Other data, including field-notes and documentary material have been similarly treated. Over a period of seven years, a very considerable body of data has been accumulated, based on interviews with NHS policy-makers, managers, clinicians, manufacturers, technical experts, service users and others. Some respondents have been interviewed several times, and a small number have appeared—as key informants—in more than one study. In this paper, we present extracts from qualitative data collected in our four studies to illustrate our account. We have edited interview transcripts to ensure the anonymity of respondents, services and institutional contexts. This sometimes makes for unwieldy transcription, but is a necessary condition of our work. We also draw on field-notes or transcripts of a number of occasions when proponents of telemedicine systems made public presentations, at conferences or other meetings. Where we refer to such occasions, we also name the speaker.
3. 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 of 2003, one of telemedicine’s leading proponents could remark in a private meeting that ‘even the term telemedicine is a turn off, and we need to start calling it modernization’. This reflects a series of shifts in the way that ‘telehealthcare’ is politically and practically understood by its proponents in the NHS. Our point of departure is to address the difficult problem of what has happened to ‘telehealthcare’ as a field of innovation, locating shifts in the conceptualization of telehealthcare services in changing policies around service provision and modernization. Central to our analysis is the way in which telehealthcare has become one of several organizing technologies that are used to define, organize and sustain territories of professional practice, and which are configured in the modernization of the National Health Service. In her contribution to an adjournment debate on telemedicine in the House of Commons in May 2000, Gisela Stuart
MP, then Parliamentary Under-Secretary of State for Health, set out the political problematic of these new systems of practice. Information is the key to the modern age. The new information age offers possibilities for the future limited only by the boundaries of our imaginations. (y) Before I explore the use of telemedicine further, let me explain the wider need for change. The Government is committed to building a new NHS which is faster, fairer and more convenient for patients, and fit to face the challenges of a new millennium. (y) Telemedicine and telecare will play a vital part in modernization. They are not new medical disciplines but tools that allow services to be delivered in a new way. They will provide services for patients, when and where they need them. (y) Telemedicine and telecare have the potential to transform a patient’s experience of the health service by reducing inconvenience, shortening journeys, and avoiding unnecessary referrals. They also present new opportunities to deliver and configure services and, as my Hon. Friend [Dr Howard Stoate MP] has said, new opportunities for professional development. I recognise what he has said about the need for changes in attitude and work practices if telemedicine and telecare are to flourish. If we are to realise their potential, we must be willing to communicate and work across professional and organisational boundaries. (Hansard [Commons], 4 May 2000: columns 392–396). The boundary of the millennium, then, is that of the information age. In Ms Stuart’s account, telehealthcare was not a new clinical discipline, but is transformative of patients’ experiences by subtracting problems of time and space from the organization and delivery of health care. Equally, it promised transformation of the experiences and practices of professionals, by demanding changes in the ways that they understood and organized their work. Each of these territories has formed one of the territories in which innovation in telehealthcare has been worked out. Ms Stuart’s perspective is one that has been echoed systematically by both clinical and policy proponents of telehealthcare. Policy initiatives from government and from NHS managers have laid emphasis on modernization through informatics. The central policy statements—Information for Health (National Health Service Executive, 1998) and Building the Information Core (NHS Information Policy Unit, 2001)—both focus on new technologies being used to provide new kinds of service that are more responsive to public needs, and that subtracts space and adds speed to the provision of health care. In Information for Health removing distance from health care was
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framed in terms of distances within the organizational and professional territories of the health service.
shortfall in dermatologists this wouldn’t matter once teledermatology had got off the ground.
Opportunities in the field of telemedicine will be seized to remove distance from healthcare, to improve the quality of that care, and to help deliver new and integrated services. GP’s will be able to send test readings or images electronically to hospital specialists many miles away and in the same way receive results and advice more quickly (National Health Service Executive, 1998)
Indeed, dermatology seems an ideal clinical discipline to work out an image-based model of medical practice (Eedy & Wootton, 2001). However, developments in the UK have shifted from doctor-led to nurse-led encounters, and this is an important move, because it reflects shifts in the professional authority of those who enter the encounter and because this has consequences for the division of clinical labour and the kinds of work that professionals do. Diagnostic work remains important in teledermatology, and so we see two parallel systems at work. Firstly, the use of emailed digital images between family doctors and hospital based dermatologists. This is low volume work, where advisory decisions about diagnosis, referral or local management can be made. Secondly, nurses have gradually found their remits extended to organize and enact the collection of digital images, and manage the immediate clinical encounter with the patient before transmitting images on to referring doctors. This is protocol driven work, and elsewhere we have discussed in detail how working out protocols in practice was run through with difficulties for a dermatology service because it undermined existing hierarchies and professional roles (Mort et al., 2003). The importance of protocol driven work cannot be underestimated, however, because it reflects wider tendencies to seek ways to standardize and homogenize clinical decisions and practices (Berg, Horstman, Plass, & van Heusden, 2000). The effect of such standardization, of course, is to secure the basis for increased surveillance and control of professional work—a shift that runs through contemporary British debates about the place of ‘clinical governance’ in health policy and about the management of the professions themselves (Davies, 1995; Harrison, 1999). An NHS IT manager’s account makes this clear:
The e-topian vision running through Information for Health and of those who saw in telemedicine the basis for a global clinic and the technological ambitions of Gisela Stuart need to be placed in the context of structural obstacles to a global clinic in which time and space ceased to matter (Sinha, 2000), and where the scarcity of specialist clinicians was overcome by videoconferencing. But even in experimental settings, that was threatened by the difficulties of scheduling encounters and integrating them into ‘real’ NHS services (MacFarlane, Harrison, & Wallace, 2001). Organizational integration has been the principal reported problem for telemedicine in the NHS. But other work has shown how, across systems that provide real-time contact between doctors and patients, normal patterns of interaction in the clinical encounter are threatened or disrupted (May et al., 2001; Miller, 2001). Normalization in the clinic was threatened by the tendency of telemedicine systems to be fragmented experiments running parallel to ‘real’ services, but also by the absence of powerful policy sponsors (May et al., 2003b). If real-time interactivity in electronically mediated doctor–patient encounters has been proved difficult to implement, evaluate and accommodate in the NHS, image based diagnostic services have become possible. Teleradiology and teledermatology are two important areas of ‘store-forward’ development. But in radiology, the notion of teleradiology has long since vanished, since the images that radiologists work with are already often produced in the form of electronic images, and moved around on disk or by email. Teleradiology normalized rapidly, once common technical standards for images agreed (Thowarth et al., 1994). Teledermatology, our second example of mediated medicine, has been more problematic. One consultant dermatologist told us that: I mean, it really was Blair1 and everybody at the NHS (y) and the message came very strongly from government that despite the fact that there was a 1 The Rt Hon Tony Blair MP PC, at that time Prime Minister of the United Kingdom.
TM4 WBQ17: Using digital communications makes it easy to follow the audit trail. Recording voice, digital images and tracking access to records—and having accurate legible recordings reduces the risk of (y) litigation, instability of infrastructure, lack of interoperability, decision support software taking away decision making from clinicians. (y) Protocols are drawn up, e-ICPs are developed involving a wide range of clinical staff. This is an inclusive and holistic approach that ultimately benefits the patient, it can speed up diagnosis, there needs to be assurances—of a human element in the process. The central feature of teledermatology is that it is employed in relation to ‘non-urgent’ cases, and especially in the management of chronic conditions with recurrent exacerbations, like Psoriasis. While there is a shortage of consultant dermatologists in the UK this is
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not so severe that people presenting with sinister signs cannot be rapidly seen in hospital clinics. Such patients require managing through the health care system in two phases, first by work that defines their point of entry and priority for service (triage) and second by work that moves them along a patient pathway or trajectory. Teledermatology is not alone in moving towards structured, protocol-driven services. Work practices organized around standardized triage protocols are found in nurse-led synchronous services too. For example, a service (Hibbert et al., 2003) that offers people with Chronic Obstructive Pulmonary Disease (COPD) interactive contact with a specialist nursing service to monitor symptom stability was explicitly intended to control hospital admissions and readmissions for exacerbation events. Similarly, in the case of a telepsychiatry service for people with anxiety and depression, the nurse who managed and organized mediated interactivity was equally explicit about the motivations that underpinned the introduction of a telehealthcare system. CRM: You’re going to be doing this with quite a specialized group of patients aren’t you? S2RA2-(TM3): We’re only using this for referrals. The other problem is that people are too keen to admit, so that [S2-consultant1] and [S2-consultant2] can screen for admissions, so it might be that the [professionals on the network] might be happy that they have been spoken to and a joint position maybe has been (reached), and that will stop a lot of admissions. CRM: OK, so it’s going to be about controlling access? S2RA2-(TM3): It’s going to be about controlling access. Yes. Access: because the big problem they have in here is once the patient gets a bed here they don’t want to leave. They want to keep coming back. And discharge planning is another thing because a lot of people don’t travel up for discharge planning, so therefore they don’t know what should be done for discharges education wise, so that’s going to be important. Telehealthcare services can be used to lift patients out of traditional services, perform triage and define their clinical trajectory, before reinserting them in conventionally organized pathways of care. These are means of controlling points of entry into the hospital department, and managing patient waiting times and throughput. Here, existing telehealthcare systems permit expert surveillance of the stability of organic systems and the trajectory of illness, through routine tests and examinations, and by sustaining relationships with patients at a distance.
The move from an e-topian vision of telemedicine delivering electronically mediated diagnostic clinics, in which patients and professionals encounter each other in real-time has been displaced. Hopes that telemedicine would undercut geographical inequalities in resource allocation and service provision, and would subtract the problem of waiting time from service experiences, by efficiently redistributing clinical services across the epidemiological terrain have barely been fulfilled. However, within the shifting development of telehealthcare local technologies of control have been developed, as part of the wider apparatus of demand management in the NHS.
4. 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 shifting some routine work away from primary care clinicians. In the same period, ehealth—using web-based resources—has also become increasingly prominent (Kendall, 2001). But while telephone triage (using an ‘old’ technology) and e-health (using a very new one) seem to have prospered, telehealthcare—systems of the kind that we have discussed above have not been adopted on a significant scale despite considerable political support, and despite the efforts of policy and clinical champions. The comparison between these three systems of practice is in some important ways unfair: telephone triage delivers advice, not care, and e-health delivers information— often undifferentiated and difficult to interpret—while telemedicine systems are oriented towards clinical practice and are intended to deliver diagnosis and disease management. While the potential of telemedicine to secure easier access to health care for service users is not in doubt, in practice it seems to be being used in a variety of ways that are about reconfiguring clinical workload, and particularly about trying to manage and regulate demand for some kinds of service. Many of these interventions are very modest in scope. In part, this is a matter of technological possibilities being realized as ‘hardware’ is developed and organizational structures (like call centres) are invented to accommodate these new possibilities. However, just as the invention of the call centre has reconfigured the distribution of work and costs, and has reconfigured
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social relations between customers and companies, so too do these new systems of organizing clinical practice. Information and communications technologies are bound together in the British context in a program of developments (the NHS National Programme for Information Technology) that is the largest single development and implementation program in the history of Informatics. So the decline of telemedicine and its displacement by telehealthcare needs to be contextualized in a wider field of colossal technological ambitions. Telehealthcare is only one means by which new kinds of operational efficiency can be brought into play, and in which these possibilities are opened up. Now looking at telemedicine and telecare, we include telecare very much in this these days because one of the ways in which services are going to develop is delivery of services in the home, and home care monitoring we see is going to be very much a growth area over the next few years, because it does allow us potentially patients can be discharged early because they can be monitored at home, assuming the home conditions are correct (Preston, 2001). Being ‘much more modern’, as Peter Preston described it, is located in relation to a new kind of citizenship—and elsewhere this is manifest in a notion of the ‘future patient’ (Kendall, 2001), who accesses health care provision by a variety of ‘non-traditional’ means and is empowered by these new forms of access. One interpretation that we can place on these public discourses of technological ambition is that it is not simply the provision of health care that is to be modernized, but also the user of these services. The commissioning brief for an NHS research programme on ICTs and telehealthcare makes this clear. The SDO programme is also interested in the impact new technologies have on the relationships between users and professionals. This may include their role in changing the dynamic between user and professional. Many current concepts such as the ‘‘expert patient’’ and the ‘‘resourceful patient’’ and innovations in decision support techniques are related to technology-enhanced changes in the balance of power between users and professionals (NHS Service Delivery and Organisation Research and Development Programme, 2003) Political statements, whether by clinical champions of new systems of practice or their political supporters, represent some of the surface shifts of telehealthcare technologies. In fact the real shift has been in the territories in which telehealthcare is worked out. Realtime clinical interactivity between doctors and patients, for example, has collapsed in the face of its intrusion into the organizational structures and professional
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arrangements of the hospital outpatients’ clinic, although it remains an important component of telenursing. So, the territorial shifts that we have so far described, from telemedicine through telehealthcare to telecare, have meant that the question of distance and scarcity itself shifts its focus. In telecare, the distances that are bridged are no longer within the formal institutions of the health care system, but between the patient and provider. One senior NHS manager was clear that the burden of responsibility was being moved in that direction. TM4 I23: (y) The other major players are the telecoms companies, BT, Orange and Vodaphone. All three are supporting mobile based applications for individual monitoring and there are some very nice applications around, which I think you know (y) I think it’s a major area, because the telcos—I mean the mobile phone companies—want to support anything that uses mobile phones. And to some extent the NHS agenda is to push care back to the patients, say ‘well, it’s your life, it’s your responsibility’. (y) So, you know, the mobile operators and some of the telemeds companies are starting to look at that sort of application. I’ve been saying to them, ‘fine, and if you can incorporate digital television then you may be able to piggyback onto some [government] funding schemes. TF: When we were talking about innovation before (y) we talked specifically about the technology and people say it’s part of it, but not the only thing. TM4 I23: (y) Companies and organizations which may drive innovation are probably the companies calling for people to provide chronic disease management. (y) It may be that they will be the people who will take up mobile based applications—the sort of BT type call centre care that they’ve piloted in [name of place] and whatever—and so the chronic care providers may drive innovation as contractors to PCTs. The move to reframing the end-user of telehealthcare systems, then, has been accomplished by ‘rebranding’ some telehealthcare systems as chronic disease management solutions. Here, the problem of demand management is embedded in National Service Frameworks for chronic diseases, and in relation to the major burden of chronic illnesses where surveillance of vital signs, blood chemistry and oxygenation is a key part of primary care work. Proponents of new systems claim that this is possible, and are pressing forward with systems design and developments that link these policy objectives. Presenting Doc@HOMEs. In response to positive patient feedback during recent clinical trials of its Doc@Home remote health monitoring service, Docobo has enhanced its service to support the needs of patients suffering from Diabetes, Chronic
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Respiratory Failure (CRF), Chronic Heart Failure (CHF) and Asthma. The development of Doc@HOMEs was made possible with the help of a grant of h1.1 million from the Information Society Technology (IST) Programme of the European Union’s Fifth Framework Programme (FP5). It is now set to improve the quality of life of thousands of people, including the elderly and disabled, freeing up time currently spent with doctors and hospital visits. This in turn will help ease the pressure on the family doctor. The trials have proven that Doc@HOMEs gives the patient a sense of control over their condition and allows their medical carers to stay ahead of the disease. It also provides education about the disease and its risk factors, and supports lifestyle modification strategies that need to be introduced to help manage the condition. In the case of CRF and Asthma, the team caring for the patient can monitor symptoms such as breathlessness, coughing and wheezing, and detect early signs of degradation in order to avoid an acute event. For CHF, crucial symptoms such as night time urination, swelling of the ankles, palpitations, fatigue and breathlessness can be remotely monitored. (Docobo PLC, 2004). The shift here is to monitoring units reading data outputs—at the high end of the spectrum, from wireless devices—but more usually from links using conventional domestic telephony. Once again, these employ protocol driven nursing service working from call centres. Both patients and professionals are reconfigured by these shifts, because both become implicated in collecting and managing the transfers of routine performance data between different end-users. This involves routine and highly determinate patterns of work that extend over lifetime illness careers, and so impact on the configuration of divisions of labour in health care. One important way in which they do this is by incorporating the ‘expert’, ‘resourceful’ or even ‘activated’ patient into the division of health care labour itself. So emergent systems of telecare permit extended divisions of labour in health care, but they do so in ways that are increasingly amenable to external regulation, quality control, and governance. Data outputs about blood chemistry, or about other symptoms, extend across domains of interpretation and analysis. It is important to be clear that the performance to be managed here is that of the chronically ill themselves, and the quality of their selfcare is called into question as these new modes of domestic surveillance become operationalized.
5. 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 deeper structural problem, which was the absence of a ‘suitably substantial transport layer’ (TM4 I23), a set of everyday utilities into which integration work itself could be embedded, and which would act as a venue for both policy-related spending and evidence-production. This may be so, but arguments that one form of technology fails to normalize because another is absent are hard to sustain. Some forms of telehealthcare service delivery have normalized, once simple agreements about technical standards have either been locally or nationally constructed. We can see this is the case of teleradiology, and the case of some teledermatology services. Some services do have transportable standards that permit them to move between organizational destinations for their work. Instead, it may be that the kinds of doctor–patient interactions that the ambitions of telemedicine’s proponents were formed around were the source of the problem. These were aimed at proximal relations, bring doctor and patient closer together. This followed a wider pattern, drawn from developments in the US (Whitten & Collins, 1997) where populations were underserved by health care providers because of spatial inequalities in the distribution of health care, or because populations lacked the financial resources to buy appropriate health care in a market place (Grigsby et al., 2002). Bringing doctors and patients closer together in routine, nonurgent outpatient services was, however, to move in the wrong direction. The ambitions of service providers, clinicians and politicians were united in a technocratic or e-topian vision of possibilities for improved access. But like other interventions intended to improve access, these kinds of services actually increased problems of demand management at a time when an alternative policy stream was identifying the expert patient as one who worked to organize and deliver self-care and so both reduced demands on the formal health care system and was kept at a distance by intervening semiautonomous patient groups and integrated nursing services. The shift from telemedicine to telecare provides a technological framework for the domestic management of chronic illness because monitoring performance data enables quality control over the expert patient’s self-care and illness management, while its in-built parameters—which frames the patient as a minimum data set—govern points of entry into formal care systems. The interactions that are formed through these systems of practice are framed through distal relations.
ARTICLE IN PRESS C. May et al. / Social Science & Medicine 61 (2005) 1485–1494 Interactivity Teletriage: including protocols or decisionmaking rules operationalised by health professionals or call centre staff. These systems determine and control the patient’s point of entry into NHS provision, or offer advice and guidance about self-care practices or alternative provision.
Informatics Information spine: including clinical governance systems, treatment guidelines, protocols, electronic health records, picture archiving and transmission. These organize, store and deliver information about patients’ histories and treatment modalities and about the organization and costs of care.
Telecare: systems that link professionals and patients for the purposes of organizing and delivering clinical information about symptom stability and management trajectories of specific health problems to professionals, and management information and advice to patients.
E-health: including intra and internet resources that permit undifferentiated access to information about health, illness, treatment and care, and to web-based chat or bulletin boards through which they can communicate with others.
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Fig 3. Technologies that construct proximal and distal patients.
We, therefore, find ‘service users’ framed in four interconnected ways in the rhetoric of policy. They are:
expert (know their illness and its management); resourceful (employ self-care and do not make ‘inappropriate’ demands);
activated (technologically connected), and; future (‘appropriate’, ‘informed’, ‘organized’, distal). As new systems come on stream and become routinely embedded in everyday service delivery, they offer new points at which power and knowledge relations between citizens and service providers can be constituted and contested. Embedded within them are the passage points where expert or resourceful patients might exercise their expertize or resourcefulness in attempts to claim attention or command resources. In this context, telecare systems offer new modes of management control to the NHS, concrete social and clinical definitions of appropriateness of admission to formal care at a time when commanding ‘appropriate’ service use is a political as well as a practical problem, and where primary and secondary care providers are sometimes at odds with each other on what those points of contact are (Rogers, Hassell, & Nicolas, 2001). It is at this point that integration comes to matter very much. The NHS itself is currently manoeuvring towards a very complicated and enormously ambitious programme of informatics development—in which database design and implementation on its own is intended to develop systems ten times larger than those owned and employed by the US Department of Defense in a matter of 5 years. How different Telehealthcare and Telecare practices are integrated into these new structures is the key to their future success. In Fig. 3, we suggest some points of contact between them. Integration is therefore the key to understanding the problem of telemedicine’s (mediated interactivity between doctor and patient) shifts, first to telehealthcare
(triage, management and control by various health professionals), and then into the more diffuse field of telecare (remote data transfers in chronic disease management). Telecare has potential in the current organizational structures of the NHS because it can be provided through systems that are bracketed off from local direct providers of clinical services—the doctors and nurses working on the ground—and provided through call centres and structures that maintain distances. Systems originally intended to perform medicine at a distance may now find their place in practices intended to keep medicine at a distance.
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 earlier drafts of the paper. We are most grateful to the necessarily anonymous participants in our studies for their time and candour; and to Cheryl Wiscombe for secretarial support of this study. The Royal Society of Medicine and the British Association of Dermatologists, amongst others, kindly provided us with audio-recordings of their meetings, for which we are very grateful indeed.
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