APPENDIX 10
Memorandum by The Technical Solutions
Implementation Group of the UK e-Health Association (MT 41)
UK E -HEALTH
ASSOCIATION
The UK e-Health Association is a membership
body representing those organisations and individuals interested
in promoting e-health in the United Kingdom. It is a non-profit
making company limited by guarantee governed by a Board of Trustees.
It counts among its members organisations and individuals from
both private and public sectors. Further information about UKeHA
may be found on its website (www.ukeha.org.uk).
This evidence has been prepared by members of
the UKeHA Technical Solutions Implementation Group (TSIG) and
approved by the UKeHA Board.
The UKeHA and TSIG would be pleased to submit
oral evidence, if required.
RECOMMENDATIONS
1. The Department of Health should provide
active top level leadership for the development of e-health services
and should more effectively coordinate existing and new e-health
activities across the health sector; and to this end should designate
an "e-health leader" at the most senior level (outwith
the National Programme for IT).
2. There is a need for a showcase for new
technologies, systems and services, in use on a day to day basis,
designed to allow evaluation and appraisal of new developments
based on experience and their relative value as part of a wider,
overall solution.
3. Such evaluation should also cover the
technical capabilities of new technologies and systems, with support
from appropriately qualified medical technicians and IT specialists.
Clear information should be produced on the capabilities and limitations
of the systems in different environments, how and where they could
be used, and interface with other systems.
4. Such evaluation should also cover the
people and process aspects of new technologies, to develop "standard
operating procedures" to ensure the seamless integration
and interoperation of the specific device, system or service,
irrespective of its place of use or the place of service delivery.
5. e-health systems and services subject
to such evaluation should be accredited such that any accredited
system or service should be able to integrate and interoperate
with any other accredited system or service anywhere else in the
country.
6. Recommendations 2-5 above could be achieved
within the context of an "Incubation Centre" where innovations
are used and tested in real working situations. Within such a
centre the relevance to and capabilities of integration and interoperation
with other systems could be evaluated and an appropriate blue
print of how they should be used in other real world situations
defined. The "Incubation Centre" would not be just a
showcase but a model of how innovative technologies could be used.
INTRODUCTION
1. This report looks at the use of new medical
technologies from an e-health perspective. e-health, as with e-commerce
and e-government, relates to all aspects of health that utilise
electronic processing, communication, storage etc. Given the prevalence
of such matters in all walks of life, one would think that this
would be a principle concern of any initiative concerned with
improving health or developing healthcare services. Unfortunately,
e-health is usually an afterthought, and new technologies are
more usually developed in isolation, instead as part of an integrated
and interoperating network of care services.
E -HEALTH
AND NPFIT
2. We understand that the Health Committee's
Inquiry does not extend to the National Programme for Information
Technology (NPfIT). It is however important to understand that
e-health extends much wider than NPfIT—indeed NPfIT can
be regarded as a relatively narrow programme of infrastructure
development, which in due course may well enable much wider e-health
development. In the short term there is a danger that the very
significant investment in NPfIT and the consequent prominence
given to it in the management and funding of the NHS will overshadow
and suppress the need for wider e-health development. There is
a real danger of missed opportunity through the lack of clear
leadership from the centre on e-health development and the coordination
of existing e-health activity.
3. This is why our first recommendation
is concerned with the need for much more active top-level leadership
by the Department of Health on the development of e-health.
THE UTILISATION
OF TELEMEDICINE
(INCLUDING TELECARE)
AND ITS
FUTURE POTENTIAL
FOR IMPROVING
SERVICES
4. New technology within medicine is a subject
as old as medicine itself and as in any walk of life, is always
looked on with scepticism and introduced with reservation. The
stethoscope is a particularly good example of such initial scepticism.
It is, however, in the area of computerisation that the biggest
problems arise. This is best understood by looking at the history
of computers in health. Initially computers delivered little or
no clinical benefit but did increase the workload on clinicians
and were a long way from being "user friendly". The
advent of the PC and more specifically, sophisticated operating
systems such as Windows, helped dramatically by being more useable
and offering easier access to information. However, a whole plethora
of dissimilar competing systems were developed with individual
clinicians exercising personal preferences for this or that system.
They did not (and still do not) integrate or interoperate with
one another and they do not necessarily collect the same data.
While much of this is the responsibility of NPfIT (and therefore
outside the scope of this Inquiry) there are important aspects
that are not covered and it is these that we now examine.
5. Most measurements of physiological data
by clinicians, such as blood pressure, are done manually or by
stand-alone devices. Transcribing this information into a patient's
record is also done manually, even when using a computerised electronic
patient record system. These electronic devices are obviously
more prevalent in hospitals and ambulances. Some even have a data
port, which will allow them to connect to another electronic device
or link them into a larger, proprietary system. There are two
significant problems with this, firstly, they are designed as
stand alone systems not as components of an integrated information
system and secondly, there is much confusion about what they can
or cannot do.
6. An illustration may help. The government
has recently made money available to ambulance services to purchase
"telemedicine" enabled 12 lead Electrocardiograph (ECG)
units (An ECG unit is a device for producing a graph of the electrical
activity of the heart. The term "lead" refers to a view
of the heart through a particular axis). What is a 12 lead ECG?
Do we really need a 12 lead or would a 3 lead do? (A 12 lead is
used routinely in hospital both because it is available and because
it usually gives diagnostic details without the need for a cardiologist).
If we do need a 12 lead, do we need all 12 leads simultaneously
or one at a time? If one at a time should they all be of the same
time interval, sent sequentially, or a representation of the time
interval over which they are being sent? How are we going to send
it? Who is going to receive it and what will happen to it then?
7. These questions serve to remind us that
devices themselves are not a solution, in fact most devices on
their own have little diagnostic value, and there are other components
necessary to ensure that they work as part of a solution that
at least allows access to an appropriately qualified person to
use/interpret the data received.
8. It is also important to realise that
the fact that a 12 lead ECG unit has a data port and is "communications
enabled" does not make it a telemedicine unit. Telemedicine
requires appropriate data communication and trained personnel.
And what does "communications enabled" mean? Often it
means that it can communicate with a computer, which is also potentially
very misleading. Those with PC experience you will know that even
if everything works correctly now, if you try and install a new
program or device, while it may or may not work, other applications
and systems that were previously working may now not work! This
is not an acceptable outcome for a medical device. There is a
serious lack of understanding, outside the regulatory bodies,
about the use of computers in the medical field and about what
is and what is not a medical device and where responsibility for
failure lies.
9. Companies that produce these devices
sometimes also produce a range of other devices that link together
to make a total "solution". While this overcomes the
problem of a "stand-alone" device, it does create an
additional problem that you have to use their components, their
terminals, their software etc. This is how the computer market
was before the advent of the IBM Personal Computer (PC) 25 years
ago. Nowadays you can buy any PC software and it will run, any
hardware and it will connect. You can take data off your PC and
run it on someone else's.
10. We take this interconnectivity for granted,
and businesses have grown up that only make certain bits of computer
hardware. Perhaps less well known is the fact that specialist
programmers write pieces of code which are used by other programmers
to incorporate into their own offerings. Before the "PC"
this could not be done. Not only could you not take a floppy disk
from one computer and run it on another, the disk probably wouldn't
even fit. Programmers not only had to write programs for specific
makes of computer but they might also have to restrict users to
a set of known printers and other peripherals.
11. Just as the PC market changed, so too
must the medical market. For the PC this was brought about by
an open hardware platform (the IBM Personal Computer or "PC")
and a common operating system or user interface. The medical market
must change in a similar way but with one important additional
item, the adoption of common practices and standard clinical procedures
on a national basis. This is nothing to do with clinical or regulatory
standards, which are already well catered for, but a clear set
of "Standard Operating Procedures" to ensure different
people in separate locations know what is going on, where in a
process things are and what comes next.
12. Most professions have clearly defined
rules and procedures, and as circumstances change then the rules
change. Medicine is practised by highly qualified professionals
but (and this is really serious) they practice medicine in their
own particular way. Imagine if this was how air traffic control
was handled. With the advent of e-health, many clinical interventions
will be done without the physical presence of a clinician, or
by a less qualified clinician remotely supported. For this to
work smoothly there need to be clearly defined operational procedures
and processes. We are not referring to aspects already adequately
covered by existing standards bodies and agencies but the specific
elements that pertain to remote use and the interaction and interoperability
of people and systems when connected electronically.
13. As has already been mentioned, the term
"Telemedicine" now comes under the broader banner of
e-health, along with Telecare. However, the intended focus of
this Inquiry is presumed to be the use of e-health systems and
services to deliver remote medical interventions (telemedicine)
and ongoing remote care at home or other non-medical facilities
(telecare). The key word here is "remote", which simply
means that one or more elements of the solution are not at the
same locality as the patient. Remote can, therefore, be as diverse
as the care of an airline passenger by a doctor on the ground
or a patient receiving care at home from a community nurse with
remote access to patient records, hospital booking systems etc.
Large distances are NOT a prerequisite!
14. At the moment, instances of telemedicine
and telecare tend to be looked at in isolation, a bit like looking
at flour, eggs, sugar etc as the end product without looking to
see how these things can be put together to make something that
is more than the sum of the parts. Indeed, very little consideration
is given to telemedicine despite the huge cost being incurred
in building NPfIT, which will enable telemedicine and turn it
into a major form of medical intervention.
15. NHS Direct is telemedicine, in the sense
that the initial activity is telephone based (and therefore remote).
Despite doing a reasonable job for many, it does a less than adequate
job for most long term or repeat illness patients, who need an
enhanced system where they reach a clinician with direct access
to their notes and, in the case of longer term illness, perhaps
even real time medical parameters, blood pressure, ECG etc. It
is not that the capability does not exist to provide such enhanced
service; it is just that there is no high level support for such
initiatives.
16. Instances of telemedicine and telecare
are currently run as local "pilots" where there is a
clinical lead that is willing to support the initiative. Often
funding for such "pilots" dries up or the clinical lead
moves on. This lack of high-level support means that the same
initiatives are piloted again and again all over the country,
the outcomes of previous pilots being completely unknown to anyone
other than those intimately involved in the project.
17. There is also a sense that telemedicine
systems, because they connect to computer systems, which are getting
cheaper and cheaper, should also be significantly cheaper than
hospital systems. An over the counter blood pressure unit from
Boots can cost you less than a hundred pounds, while a hospital
unit often costs 10 times this. The answer is clearly one of quality,
but as more and more of these systems are produced their unit
cost will reduce. What we shouldn't do, but is happening, is to
compare telemedicine systems based on low quality components,
with the equivalent high quality hospital based system.
18. Once we make this change of attitude,
the potential for telemedicine far exceeds our imagination. Care
homes are, by their very nature, places that tend to have a greater
need for home visits and out of hours care. By putting telemedicine
equipment into these locations and connecting them to a "virtual
GP" system, much of this need could be addressed remotely.
Community nurses should also be equipped with appropriate systems
both in terms of monitoring and remote access to electronic patient
records, decision support tools and so on. Once established, with
the staff and patients both conversant with the systems, it will
be possible for regular, routine monitoring to take place, not
just knee jerk emergency intervention. Regular monitoring combined
with other pieces of relevant information can be used for early
intervention and ultimately prevention.
19. Telemedicine is not simply about technology,
it requires the adoption of common practices and processes. This
cannot be achieved by individual "pilots" run by local
enthusiasts; this must be done, first in a specific area (where
it is evaluated and problems ironed out) and then systematically
on a wider and wider basis until adopted nationwide. This requires
support at the highest level within government and, on an International
basis, through cooperation and mutual development with other countries.
20. Telemedicine will also enable a strong
interaction between the private sector and NHS. There is a diving
company, based in Aberdeen, which provides telemedicine support
for their divers, even while still in hyperbaric chambers. A doctor,
also in Aberdeen, is able to monitor a diver, under pressure in
a hyperbaric chamber, on board the company's diving vessels, wherever
they may be, anywhere in the world. Under the NPfIT, these divers
will all have an electronic patient record; the private doctor
in Aberdeen should be allowed appropriate access to this record
to be able to properly manage the current medical situation. Likewise,
on returning to shore, the diver's GP should be able to see what
action was taken by the doctor in Aberdeen and by any medic on
the ship. This is just one example of how companies and even individuals
will pay for medical services, the outcome of which is available
to NHS doctors, thereby simplifying and streamlining the interventions
and care given and ultimately reducing costs through cutting out
duplication of tests etc.
21. Ultimately, people will be able to receive
hospital grade monitoring in their workplace, at the gym, on board
an aircraft on holiday and so on. These cease to be isolated incidents
but part of the complete picture of a person's long-term health.
THE RECOMMENDATIONS
OF THE
HEALTHCARE INDUSTRIES
TASK FORCE
(HITF) REPORT, PUBLISHED
17 NOVEMBER 2004
22. The main recommendations of the HITF
report were contained in nine key outputs; however, these are
primarily concerned with medicine as we know it, not e-health,
which is seen as a new technology in itself. It is our belief
that, within a very short time frame, all aspects of health will,
in some way, integrate with a wider "e" component, even
if they are not themselves part of an overall e-health solution.
To that end, this report emphasises the additional aspects needed
for this to happen.
23. The HITF report seeks to "inform
procurement decisions and encourage the support and uptake of
useful, safe, innovative products and procedures". For this
to happen, there must be some system of evaluation and assessment
that has also been proven in real life scenarios. The UKeHA TSIG
has already produced various documents on how this should be done
and welcomes the recommendations of the report. Unfortunately,
unless these recommendations are followed through, nothing changes.
There is also the need to "train the trainers" with
regard to the wider benefits of e-health. While the outputs of
the HITF are being considered and the follow-on actions devised,
e-health implications must be built in. Otherwise technology will
only be an add-on to existing practices, not an integral part
of healthcare delivery.
24. The report also seeks to "Stimulate
more innovation and encourage a more entrepreneurial culture in
industry and the NHS". The only part of this that needs serious
action is that part involving the NHS and even here it is not
a lack of desire on the part of those involved, simply those in
decision making positions. The UK leads the world in the development
of innovative medical technology; the problem is not one of innovation
but one of innovative leadership.
25. The HITF report calls for a new Innovation
Centre, and while this is a good idea in principle, what we really
need is an "Incubation Centre" (see our Recommendations)
where innovations are used and tested in real, working situations.
Within such a centre the relevance to and capabilities of integration
and interoperation with other systems can be evaluated and an
appropriate blue print of how they should be used in other real
world situations defined. The "Incubation Centre" would
not be just a showcase but a model of how innovative technologies
can be used. Nurses need to see other nurses working with something
to understand the true potential and value; the same is true of
all professionals, not just in healthcare. Such a centre would
also fulfil a large number of other recommendations of the HITF
report, with the exception of introducing an "innovation
fund". However, the output of the "Incubation Centre"
will do this and the need therefore is not for a "fund"
but to fund the "Incubation Centre".
26. One aspect looked at in the HITF report
is procurement. It is not for us to make recommendations outside
our sphere of expertise. However, common sense would suggest that
if an "Incubation Centre" is established and it delivers
clear guidelines on not only how to use a specific piece of technology
for a particular function, but defines best practice procedures
and processes, then healthcare agencies within the NHS should,
subject to their own budgetary constraints, be able to purchase
said technology for use in this manner. Those involved in the
procurement process should actively work with the "Incubation
Centre" to ensure that "cost effectiveness" is
a major consideration and provide details of how this is evaluated.
27. e-health also has a serious role to
play in providing the evidence base in support of R&D activities.
Regular monitoring of everyone, by using e-health tools as part
of an overall e-health programme, will provide a greater understanding
of factors leading to ill health. At the moment people only really
enter an evidence-based program once they are already sick. e-health
offers the first real chance of monitoring people, both well and
sick, from before birth until death and should, therefore, be
embraced as a common thread to any R&D programme.
28. The UKeHA is aware of a number of initiatives
involving different academic centres of excellence, which are
looking to be "the recognised academic body" within
a specific area or aspect of health. The UKeHA and its TSIG would
be happy to work with any academic institute to this end and already
has strong representation from a number of academic bodies as
members. The key would be for the academics to work with the "Incubation
Centre", as outlined above, to ensure that all are working
to the same goals.
29. The establishment of an "Incubator
Centre" would also provide a platform from which to address
communications with and between patients/the public and clinical
bodies/government agencies in all aspects relating to e-health.
A working centre that is open to public scrutiny and which would
actively encourage the participation of patient and healthcare
groups, including Royal Colleges, Unions and other interested
parties, would provide an open forum that would actively encourage
communication. This, in turn leads to education and training.
30. "Knowledge dispels fear" is
an apt phrase because the converse is also true. People are afraid
of what they do not understand. When PCs were first introduced,
people from all walks of life became concerned about their jobs
and a myriad of other completely unrelated things. Training and
education removes this barrier of fear and people move on.
31. The HITF report suggests "Maximising
UK influence in regulatory matters in the EU and other international
forums". We agree with this wholeheartedly, the UK already
leads the world in many aspects of e-health and to apply best
practice and standard operating procedures to this at a time when
they simply do not exist would be to secure our long-term influence.
This is also a major cost factor as, if other standards are adopted
in preference to ours, then in order to operate on an international
basis, our systems will have to be changed or adapted to meet
these different standards.
THE SPEED
OF, AND
BARRIERS TO,
THE INTRODUCTION
OF NEW
TECHNOLOGIES
32. It is fair to say that most e-health
"pilots" have not moved beyond the initial "pilot"
stage. The reasons for this have been well documented: principally
they have been driven by a single, local, sponsor with no ongoing
funding and no "place" for a full blown service within
the current healthcare structure.
33. Healthcare is broken up into very distinct
compartments and if an initiative crosses boundaries, or worse
if the benefits of an initiative are seen in a different sectors,
there is no funding. Sources of funding also change, and even
when funding has been obtained, it is not unknown for this to
be used somewhere else or for a different purpose within an organisation.
34. There is little to no long term planning,
with short-term goals taking precedence over long term objectives
that could otherwise bring accumulating benefits.
35. There is a lack of trust by clinicians
in IT systems, which have, in the past, been purely administrative
tools. There needs to be a place where people from all sectors
of healthcare can go and see new technology being used in real
situations by ordinary people.
THE EFFECTIVENESS
AND COST
BENEFIT OF
NEW TECHNOLOGIES
36. As new technologies, practices and processes
are adopted, there will be the initial benefits for which they
were intended, but there will then come additional benefits, many
of which will remain unknown until they actually happen. What
we have to be wary of, however, is a simplified comparison against
some arbitrary factor.
37. By way of illustration, there was a
dermatology pilot conducted between GPs in rural practices and
a remote consultant dermatologist. When the GPs were faced with
a skin problem they could not identify, an appointment would be
made for the patient to return to the practice at a time when
the doctor could have a live link to the remote dermatologist.
The skin would be photographed using an appropriate digital camera
and the image sent to the dermatologist. He would discuss this
with the patient in the presence of the GP.
38. At the end of the project it was reported
to be a failure, not by the doctors, patients or dermatologist
but by a third party auditor. The reason for the failure was that,
after an initial period of regular use, the system was used less
and less. On questioning the doctors, they deemed it a huge success.
Why the drop in usage? Each time they referred a patient, they
were, in effect, receiving ongoing training. Once a condition
had been seen on a number of occasions, the doctors no longer
needed to refer the patient but were able to deal with the situation
themselves!
39. Healthcare will never cost less, but,
it will be possible to do more for the same amount. As new technologies
emerge, when a patient is screened for one particular aspect,
it will probably be possible to simultaneously screen for many
other things at the same time. If e-health is taken seriously
and the right sort of leadership provided, medicine will start
to move from only dealing with people once they are sick, to managing
them while they are well and intervening at the fist sign of "preconditions"
to act in a preventative manner. Healthcare in the UK will move
to a truly National HEALTH Service.
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