Memorandum by Professor Carl May (MT 03)
1. BACKGROUND
1.1 Since 1997 we have undertaken a series
of studies, supported variously by the NHS Executive (North West);
NHS Modernisation Agency; Department of Health; and the Economic
and Social Research Council. These studies have investigated the
factors that promote and inhibit the effective design, evaluation
and implementation of telemedicine, telehealthcare and telecare
systems. Our work includes observational studies of professionals
and others deploying telehealthcare systems in practice; surveys
of patient satisfaction, focus groups and a citizens' panel related
to users' views of telehealthcare systems; and systematic and
other reviews of policy, evaluation methodologies, patient satisfaction
and economic evidence for the effectiveness of telehealthcare.
1.2 Our work has also included collaborations
with colleagues at the Royal Free Hospital and UCL Medical School
(Professor Paul Wallace, Dr Robert Harrison); National University
of Ireland (Dr Anne MacFarlane); University of Liverpool (Professor
Simon Capewell, Dr Robert Angus) University of Manchester (Professor
Linda Gask, Professor Christopher Griffiths, Dr Aneez Esmail);
and Michigan State University (Professor Pamela S Whitten). Taken
together these studies form one of the most comprehensive programmes
of work of its kind in Europe.
2. DEFINITIONS:
IN THIS
MEMORANDUM WE
DEFINE TELEMEDICINE,
TELEHEALTHCARE AND
TELECARE IN
THE FOLLOWING
WAY
2.1 Telemedicine: is electronically mediated
interaction between doctor and patient either as synchronous telemedicine,
using real-time video-conferencing systems (often with parallel
transmission of physiological or other clinical data), or asynchronous
telemedicine using store-and-forward systems where images and
other data are captured and transmitted for onward review by clinicians.
The former is commonly used for management of patients' problems
(eg psychiatric interviews) and the latter for diagnosis or diagnostic
advice (eg review of digital images of skin lesions in dermatology).
2.2 Telehealthcare: is electronically mediated
interaction between patients and health professionals, often nurses.
Once again this may be asynchronous or synchronous in form, but
involves a different kind of health care work. This is primarily
work to collect diagnostic or other data for doctors, to manage
an illness by means of advice, or triage work intended to decide
whether a patient warrants admission to hospital.
2.3 Telecare: Highly portable telecare systems
for monitoring the health status of people with chronic (eg diabetes
and asthma) and degenerative (eg respiratory and cardiovascular)
diseases are now widely available (eg the Doc@Home system developed
by Docobo Ltd). Such devices measure physiological status and
other data, present this data to individual users, and transmit
it for review by service providers using either mobile or conventional
telephony. They promise accurate self-surveillance, (which may
lead to improvements in compliance with treatment regimens and
users' expertise in self-care); and remote monitoring of individual
health status by service providers to enable early intervention
and reduce hospital admissions.
3. THE UTILISATION
OF TELEMEDICINE
(INCLUDING TELECARE)
AND ITS
FUTURE POTENTIAL
FOR IMPROVING
SERVICES
Telemedicine and telehealthcare systems have
had a limited impact on NHS provision, in stark contrast to the
apparent success of telephone triage and advice services like
NHS Direct. Despite significant support framed in policy documents,
and very active clinical champions, these systems have largely
failed to become integrated in routine health care delivery. We
call this failure to normalise, and our work has investigated
the reasons for this. Our work suggests four main reasons for
the failure of telemedicine and telehealthcare to normalise in
NHS practice
3.1 Telehealthcare systems fail to normalise
when there is no positive link with a policy sponsor. When such
a link does exist, telemedicine is organisationally defined as
an appropriate means of delivering care and organising clinical
work. What stems from this is the direction of resource allocation
and infrastructure development. The absence of a central source
of concrete policy sponsorship, and thus a central funding stream,
has played a crucial role in retarding the development of telemedicine
and telehealthcare. In this context most developments in this
field are fragmentary, disconnected, and often of short duration.
Many of those services that we have seen in the course of our
work have relied on R&D funding, and have ceased once trial
or evaluation funding has run out.
3.2 Telemedicine systems fail to normalise
when they are not properly integrated into existing structures
of healthcare delivery within specific organisational settings.
When such integration does take place, telemedicine systems cease
to become alternatives to traditional models of health care, and
become embedded as routine models of service delivery. The reliance
of much development in this field on R&D funding means that
many developments have taken the form of alternatives to "conventional"
medical encounters and have been structured through clinical studies
aimed at demonstrating the existence of strong clinical evidence.
These services are rarely integrated into "real" service
delivery, and when they are, our work suggests that they deal
with low patient volumes. The organisational requirements of integrating
telehealthcare systems into hospital and primary care settings
are rarely considered in R&D contexts.
3.3 Telemedicine and telehealthcare systems
fail to normalise when the people needed to make them work in
practice are not enrolled into cohesive networks. Telemedicine
and telehealthcare systems tend to emerge when there are specific
clinical champions at work, rather than as mainstream developments.
This means that small groups of staff tend to take responsibility
for them, and these groups are often oriented towards R&D.
When co-operative functional groups exist, and when they have
have management support, the new ways of organising service delivery
that are necessary for fully operational telemedicine systems
can come into being and maintain direction.
3.4 Telemedicine and telehealthcare systems
fail to normalise when the models of clinical practice that are
derived from them are unstable, and when the pressure opf conventional
workload makes them unattractive alternative modes of delivering
care. If such stability exists, then individual clinicians can
stabilise the new kinds of knowledge and practice that are required,
and re-engineer these to meet the demands of a new mode of service
delivery. Remote diagnosis and management of patients requires
different skills to traditional face-to-face models of care, and
present different kinds of risks and governance issues. These
new modes of care change professional roles and responsibilities,
if this is not anticipated and accommodated in advance then inter-professional
conflicts can occur. Even in well designed services and R&D
projects, it is often the case that little consideration is given
to training around skills and identifying and solving novel problems.
4. PROFESSIONAL
RESISTANCE AND
PATIENT SATISFACTION
4.1 Professional "resistance"
is often claimed to be a key problem in integrating telemedicine
and telehealthcare services into NHS provision. But this resistance
is often a product of failure to attend to reasonable concerns
about (a) the safety and effectiveness of new systems, and (b)
the organisational problems noted above in developing and implementing
new models of service delivery.
4.2 It is important to note that patients
and other service users are rarely consulted in any meaningful
way about the development and implementation of such systems,
and it is often assumed that the needs of NHS service providers
and those of patients are the same, when this is by no means always
the case. In our work we have found that participatory design
of telemedicine and telehealthcare systems is notably absent.
In its place we have found abundant studies (often very poorly
designed) of patient satisfaction. These show high levels of support
for new systems but often represent highly selected patient groups,
and often focus on "hotel" aspects of care rather than
important questions of diagnostic confidence and quality of life.
Users' concerns about security and confidentiality are rarely
addressed.
5. THE SPEED
OF, AND
BARRIERS TO,
THE INTRODUCTION
ON NEW
TECHNOLOGIES
5.1 Clinical and other proponents of telemedicine
and telehealthcare are to some degree demoralised by (a) the widespread
failure of these systems to normalise in practice, and (b) the
degree to which they are rapidly being overtaken by more advanced
telecare and ehealth applications. The major focus of innovation
and spending in NHS ICTs is within NPfIT, and our work suggests
that other forms of innovation are seen as inherently risky because
of the potential for incompatibility with new IT systems, but
also because there is a shift from clinically focused innovation
to innovation in the organisation of service delivery. In this
context telecare systems are presented as chronic disease management
solutions. Some patient groups and clinicians see the emerging
field of telecare as a means of distancing people with chronic
illness from the NHS rather than as a means of closer engagement
between them.
5.2 Telecare systems are rapidly developing,
but they present similar organisational problems of implementation
and integration to those faced by telemedicine and telehealthcare
systems. These need to be resolved. It is worth noting that while
the NHS is often spoken of as a single organisation it is in fact
a federation of more than 700 Trusts, with different and often
inconsistent policy and practice perspectives on new technology
development and application. The absence of a central policy sponsor
and central funding stream for R&D, procurement, and service
development is the key barrier to these new developments. It is
worth contrasting this with the rapid development and delivery
of mechanisms for telephone triage, advice and service delivery
(NHS Direct, NHS 24).
5.3 Little is known about how useful telecare
systems are to patients and other service users. Small scale development
studies show problems of compliance even in heavily managed trials.
It is important to note that the needs of service users are often
assumed rather than demonstrated, and that they are expected to
fit with new technologies rather than be engaged in participatory
processes of design and service delivery. There is little practical
engagement with other policy processes (eg the Expert Patient
programme). There are key opportunities here for citisens to be
involved in deciding and designing telecare services that are
genuinely relevant to their needs, but this window of opportunity
is rapidly being lost.
5.4 The manufacturers and suppliers of telecare
systems face an additional problem. They sit outside of the procurement
and implementation structure of the National Programme for Information
Technology in the NHS. Suppliers are often small to medium sized
enterprises with little capacity to endure long development and
procurement lead times: difficulty in funding their own R&D,
in engaging with purchasing and procurement structures centrally
in the NHS, and in dealing with large numbers of trusts as potential
customers, all interact to make their routes to market difficult.
6. THE EFFECTIVENESS
AND COST
BENEFIT OF
NEW TECHNOLOGIES
6.1 Effectiveness: The clinical effectiveness
of telemedicine and telehealthcare systems has been established
largely by quantitative evaluations that show diagnostic accuracy
and which are intended to contribute to the development of evidence
based practice in the field. These evaluations are generally positive
but the benefits of many systems remain assumed rather than adequately
demonstrated, and definitions of effectiveness remain limited.
The assumption is that they are effective in limited clinical
contexts (in many telecare systems this is still only an assumption),
rather than being effective in solving patients' problems, or
effectively integrated into real services. Demonstration projects
that trial specific devices and systems are also generally positive.
The same caveats apply to evaluations of telecare systems, and
already problems with user compliance have been noted in some
studies. A key problem in the evaluation literature is pressure
to publish positive rather than negative results, this is especially
so because of the funding relationship between some R&D groups
and system manufacturers.
6.2 Cost benefit: high quality economic
evaluations of telemedicine, telehealthcare and telecare systems
are few and far between. Systematic reviews reveal few studies
where adequate evaluation methods have been used. The economic
benefits of new systems have been claimed by many of their proponents,
but in the absence of real evidence these are currently assumed
rather than actually demonstrated. Because patients and other
service users are almost never involved in service development
and design, the main focus of economic evaluation is at the level
of health care provider (often US insurance based services where
the organisation of funding is radically different to that in
the UK), and questions of cost benefit are rarely applied to service
users. This is important because the policy shift in the UK is
likely to mean that telecare systems are employed in relation
to people with chronic diseases. With these comes a shift in the
burden of social costs to often disadvantaged people. Telecare
systems are likely to change the cost structure of health surveillance
in primary care, perhaps shifting some routine clinical checks
on patients in general practice to automated and remote monitoring
minimum patient data sets in call-centres. The cost-benefits of
this are not yet proven.
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