towards a wireless patient: chronic illness, scarce care and technological innovation in the united...

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Social Science & Medicine 61 (2005) 1485–1494

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Towards a wireless patient: Chronic illness, scarce care andtechnological innovation in the United Kingdom

Carl Maya,�, Tracy Fincha, Frances Mairb, Maggie Mortc

aCentre for Health Services Research, University of Newcastle, UKbDepartment of Primary Care, University of Liverpool, UKcInstitute 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, sanita-

tion, nutrition and public health, programmes of

immunization and prevention, along with developments

e front matter r 2005 Elsevier Ltd. All rights reserve

cscimed.2005.03.008

ing author. Centre for Health Services Re-

sity of Newcastle upon Tyne, 21 Claremont

stle upon Tyne, NE2 4AA, UK. Tel.:

046; fax: +44 0 191 222 6043.

ess: [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

d.

www.elsevier.com/locate/socscimed

ARTICLE IN PRESSC. May et al. / Social Science & Medicine 61 (2005) 1485–14941486

increased burden of management and expenditure in the

NHS (Topic Working Group, 1999). These are illnesses

associated with improved longevity and despite con-

tinuing health inequalities, relative affluence. They fall

into distinct categories (May, 2004): organic degenera-

tion 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 psychoso-

cial 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 profes-

sionals 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/Video-conferencing

Mainly Telemedicine: Synchronouused to transmit live sound, images aor without parallel videoconferencinrange of health professionals includivideo-conference with each other orand by using proxies can undertake range of clinical tests or monitor vita

Asynchronous(Store-and-forward)

Email

Mainly telemedicine: Asynchronouforward) systems record, store and timages and other data for subsequensimply, clinical data is captured − eispecially modified digital cameras oequipment − and then usually emaileprofessionals who use it for diagnosmanagement decision-making.

Synchronous (Non-interactive)

Remote monitoring

Mainly telecare: synchronous systemonitor specific potentials (locationsyncope, movement) using sensors tcommunicate with a remote base or Response to signal may be an automtelephone call to a carer or family malert to emergency services.

Asynchronous/Synchronous (interactive)

Mobile (M-Health)

Mainly self-care: localized and perssystems mounted in mobile phones, digital assistants, personal computerwireless or hard wired. Perform perskeeping and calculations of test resusugar, cholesterol). Can communicacall centres or home base-stations. Cdata for professional review.

Fig. 1. Modes of te

simply in the content of patient-professional encounters,

but in their production and mediation. It is the

emergence of technologies of chronic disease manage-

ment 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. Organiza-

tional 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

Operational contexts s systems are nd data, with g. Here, a ng nurses can with patients, and monitor a l signs.

Psychiatry/psychology CardiologyTrauma/emergence Respiratory care

s (store-hen forward t review. Put ther by r other medical d tomedical

tic or

DermatologyRadiologyPathology

ms are used to , vital signs, hat call centre. ated alarm orember, or an

Home telecare. Monitoring safety ofvulnerable older people. Surveillance of nursing home residents.

onalizedpersonal s. May be onal recordlts (e.g. blood te with remote an provide

Personal monitoring ofchronic conditions (diabetes, cardiovascular and respiratory disease).

lehealthcare.

ARTICLE IN PRESSC. May et al. / Social Science & Medicine 61 (2005) 1485–1494 1487

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 purpose-

fully 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 manage-

ment and help seeking. Pressure to work in this direction

has from several policy directions, notably from

Study Research Question Study GTM1

1997-99

How is telemedicine Developed andImplemented in clinical Practice? Ethnographic study

Cliniciantechnicaldevelopinservices. Patients (telepsych

TM2

1999-2000

How do service users respond to a community teledermatology service?

Patients rcare teled(n=141).

TM3

2000-02

What factors promote or inhibit the effective evaluation of telehealthcare systems?

Researchmanagersexperts (nseven tel

TM4

2002-04

How are risk, governance and innovation understood in the context of telehealthcare development?

Policy mprofessioservice u

Archivedfrom TM

Fig. 2. Study questions, respon

organizations that represent people with health pro-

blems 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 exam-

ined the development (May & Ellis, 2001), implementa-

tion (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 techni-

ques, 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

roup Data s, managers and experts (n=47)g three clinical

n=20) using a iatry service.

Transcripts of semi-structured interviews; field-notes of meetings and systems in use; archive ofcorrespondence, emails, and other service documentation

eferred to a primaryermatology service

Survey data on association between subjective quality of life status and satisfaction with survey; transcripts of semi-structured telephone interviews with subgroup (n=20)

ers, clinicians, and technical =38) evaluating

ehealthcare services.

Transcripts of semi-structured interviews; meetings and presentations; correspondence, emails, and other service documentation

akers, clinicians, IT nals, managers and sers (n=70)

qualitative data 1-3

Transcripts of semi-structured interviews; group interviews (n=30); and citizens’panel (n=10); free text data derived from web-based questionnaire(n=30); field-notes ofmeetings, conferences and workshops (n=20).

dents, and data collected.


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 conceptualiza-

tion 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 bound-

aries. (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 demand-

ing 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 Informa-

tion for Health removing distance from health care was


framed in terms of distances within the organizational

and professional territories of the health service.

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)

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 video-

conferencing. But even in experimental settings, that was

threatened by the difficulties of scheduling encounters

and integrating them into ‘real’ NHS services (MacFar-

lane, 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). Normal-

ization 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 tech-

nical 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

1The Rt Hon Tony Blair MP PC, at that time Prime Minister

of the United Kingdom.

shortfall in dermatologists this wouldn’t matter once

teledermatology had got off the ground.

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 encoun-

ters, 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 standardiza-

tion, 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:

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 espe-

cially in the management of chronic conditions with

recurrent exacerbations, like Psoriasis. While there is a

shortage of consultant dermatologists in the UK this is


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 readmis-

sions 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 conven-

tionally 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 examina-

tions, 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 telehealth-

care 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, e-

health—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 accommo-

date these new possibilities. However, just as the

invention of the call centre has reconfigured the

distribution of work and costs, and has reconfigured


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 contextua-

lized 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 de-

scribed 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 technol-

ogy-enhanced changes in the balance of power

between users and professionals (NHS Service

Delivery and Organisation Research and Develop-

ment 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. Real-

time clinical interactivity between doctors and patients,

for example, has collapsed in the face of its intrusion

into the organizational structures and professional

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 responsi-

bility’. (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 manage-

ment. (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 provi-

ders 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 manage-

ment solutions. Here, the problem of demand manage-

ment 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


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 configura-

tion 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 self-

care 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 con-

trolled 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 sub-

stantial 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 techni-

cal 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 propo-

nents 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, non-

urgent 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 semi-

autonomous patient groups and integrated nursing

services. The shift from telemedicine to telecare provides

a technological framework for the domestic manage-

ment 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

InteractivityTeletriage: including protocols or decision-making rules operationalised by health professionals or call centre staff. These systemsdetermine and control the patient’s point of entryinto NHS provision, or offer advice and guidance about self-care practices or alternative provision.

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 symptomstability 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.

Informatics

Fig 3. Technologies that construct proximal and distal patients.

C. May et al. / Social Science & Medicine 61 (2005) 1485–1494 1493

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 manage-

ment 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 some-

times 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 pro-

gramme 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 be-

tween 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-record-

ings of their meetings, for which we are very grateful

indeed.

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