WEB EXCLUSIVE - Updated

The following are some of the most commonly asked questions I have received on telecare. If your question is not here let me know and I will try to include it in the next update of this page.

This is a very long document! If you want to download it I would suggest reading it as a pdf document available here

What is Telecare?

[For more details on what telecare is see the other SMART Thinking documents: Telecare- What is it? and The telecare information page]

Telecare is the use of adapting community alarm systems to produce more intuitive and assistive technologies.

It is defined by the House of Commons as:

"Telecare- defined as the network of monitoring, advice and analysis we have outlined - could play a major role in implementing government policy on long term conditions. The major benefits would be:

 ● Greater choice and empowerment for patients, who may be enabled to become experts in their own care.
 ● Potential reductions in expensive and unnecessary hospital admissions, which are already stretching hospital budgets.
● Helping to reduce the impact of known trends towards higher levels of long term conditions and towards greater co-morbidity.
● Integrating parts of the health and social care services more closely.
● Better planning and swifter implementation of improved services, based on accurate data and research."

Defining Telecare is complex as Steve Hards illustrates in an excellent fashion. The range of telecare devices is extensive, allowing standard community alarm systems to be included through to technologies that rely on software that can predict and monitor people's behaviour and activity patterns which is known as "lifestyle monitoring". This means that telecare can be used to assist people to retain a quality of life in their own homes. Telecare systems can also allow people to have certain medical functions monitored by the technologies and alerts can be sent in the event of a potential emergency situation being detected by the system.

"Telecare describes any service that brings health and social care directly to a user, generally in their homes, supported by information and communication technology. It covers social alarms, lifestyle monitoring and telehealth (remote monitoring of vital signs for diagnosis, assessment and prevention). Telecare covers a wide range of equipment (detectors, monitors, alarms, pendants etc) and services (monitoring, call centres and response). Telecare equipment is provided to support an individual in their home and tailored to meet their needs. Telecare services range from a basic community alarm service that is able to respond to an emergency and provide regular contact by telephone to an integrated system that includes detectors or monitors (ie motion, falls, fire and gas) that trigger a warning to a response centre." (National framework agreement for telecare)

The NHS purchasing and Supply Agency (PASA) see Telecare as subdivided into a range of technologies in the following manner:

What can be seen from this table is that telecare is more than just a standard community alarm. There is little doubt that telecare is a fantastic step forward in providing support at home to people who might otherwise be hospitalised or require extensive family support to retain a basic quality of life. The use of sensors to detect a person's state is a excellent use of technology to support people with various medical conditions.

- What does Telecare do?

This is an interesting and difficult question to respond to as it should do different things for different people. But in essence, it should provide an alert facility to a remote call centre. It should be able to be used to support the 'ageing in place' process and provide virtual support (over the telephone or through a P2P network) to alleviate worries and concerns from people. It could be used as a virtual neighbour which is always there when you might need it. It should be something that enhances a person's life and adds increased opportunities to their repertoire.

- Who would use Telecare?

Currently in the UK, telecare is directed towards the older population as well as people with severe medical conditions that require constant monitoring, such as diabetics and heart conditions. It is also being trialled in every other medical area to see if it performs well. Some of the more recent advances are its introduction to support adults with severe learning difficulties, although this is still in the early stages of development. There is little doubt that telecare and Telemedicine (the ability to provide remote medical support) are becoming increasingly more overt and commonplace. Visits to the doctor might be undertaken remotely in the future and a face to face meeting might only be required in emergency conditions, this might cut waiting lists. Yet it is important to recognise the distinction between telecare and telemedicine. The former is a medical intervention using technology and virtual presence to assist in the remote diagnosis and support of medical conditions, whereas telecare is about support and monitoring of activities in the home. This distinction is blurring and the telecare is often touted as possessing medical applications and used as a pseudo medical intervention. Telecare uses sensors to determine and predict behaviour and activities and assist in the generation of alerts in the event that certain expected conditions are not met. This of course relies on the algorithm that is behind how and what the sensor data is predicting. But we need to be clear this method can never be 100% effective as there will always be false positives. Sensors data is also unlikely to be effective in predicting future behaviour and therefore predicting and preventing such things as falls. The data might assist telemedicine in matching such things as a sudden drop in blood pressure or heart arrhythmia which should mean the person requires medical intervention or at least to sit down, but by the time this data is available and acted upon the person is likely to have fallen. Moreover, calling a person from a call center and requiring them to move to get close to a speaker to hear what is usually an unclear voice automatically puts the person likely to fall in a position where they might do just that.

- Is telecare SMART technology?

To my mind the answer to this is NO! For telecare to be smart, in the sense that many of the smart homes I have designed are smart, the telecare systems would require a considerable amount of reworking and rethinking. A clear distinction between a telecare system and a 'smart' home is in the 'smart' home the devices should know their current state. They are programmed to know that they are the device they are supposed to be and what operations are required of them. They should also be able to communicate with all of the other devices in the network and compare states and determine the state of the network. As Cinarbas, Eckelman, and Porter's paper (The Home of the Future: The Technology and Applications of Smart Homes, 2003) posit:

"The “smart” in “smart home” is the communication infrastructure, which allows it to connect all of these systems and devices into a single network."

In the event of a device failure this can be communicated to the other devices and a failsafe operation comes into operation and an alert raised. A standard telecare system currently does not allow this form of data transference. Consequently in a smart house if a sensor becomes corrupt or error prone this will be communicated throughout the system and the other devices might as a precaution fall back to their fail safe positions to ensure not catastrophe occurs, whereas this is not possible in standard telecare systems. A more applicable example is that in many telecare systems there is a reliance on wireless sensors that are battery operated. These batteries should be changed at regular intervals to ensure that the system works well. If a battery failed for whatever reason (let us say due to water damage causing a short circuit) the systems would not be able to determine that the sensor was not responding and take the fact that nothing was happening from it as part of its normal data. In the smart home it would be normal to set the system up to create an alert in this event and set up and a schedule for the remaining devices so the operation was not compromised but the relevant people were notified of the defective device.

For more information on this see my soapbox item on telecareaware: http://www.telecareaware.com/soapbox/smart/

- What are the key issues that face the telecare designer/installer?

The following can be read in conjunction with my design guidelines, MDDS and Design pages

1) Breaking the mould: One Size fits all

A difficulty with many telecare systems is that they are standardised, just as many community alarms are standardised. Just as Henry Ford once was reputed to state "you can have any colour of car you like... as long as it is black", telecare systems use the same approach. The same system can be used for a range of people. This will mean that the system will work for all of them, but might not be exactly what each person really needs. A good designer/installer should be able to pick only the relevant technologies that will be useful to the individual and just install those, with the proviso29 November, 2006on's condition changes.

2) Breaking the Blur: Technology push

As part of the rush to introduce telecare in the UK and in other parts of the world, there has been a blurring of terms. This is especially exemplified in the terms medical and social. The care of older people at home use to be the responsibility of social work/social care but rapidly these distinctions are blurring as the home is becoming medicalised with the introduction of combined needs assessments. It is not, for example, advisable to consider designing telecare systems for people who have dementia as you should not be designing for a medical condition. The medical condition can be a consideration within your design but not the starting or finishing point. You should be designing for the PERSON. This is a big leap for many people to make, but it is crucial. If you fail to design for the person your systems might fail because of poor design, and this could in the future lead to legal action. Moreover, installing a system, for example, for a person who has cognitive impairments, that relies on the remote call centre talking to the person through a speakerphone might just exacerbate the medical condition and increasingly disable the user of the system. It should also be noted that we should not consider technology as the first resort, or the easy option, the implications from using technology and the ethical considerations are massive and not be treated lightly. We should be making the quality of life better for the people we design systems for and technology can do this but we do not want to disable them. A good example of this is the remote control on the TV, this allows many disabled and older people to change channels with relative ease as long as they can manage to use the small buttons with tiny writings and odd symbols. Yet for many the use of this device means they become couched potatoes remaining in their chairs rather than getting off their bottoms and waling to the television and changing the channel by hand. Effectively the remote control disables us making us a slave to inactivity just as many technologies designed to "support" people can inactivate an impaired individual.

3) Breaking out: Thinking about tomorrow

I know 007 - James Bond stated that ‘tomorrow never comes’, but unfortunately in the world of technology tomorrow often comes before the day is over. New technologies are constantly being developed and the people leading the way today might not e leading the way tomorrow. It is therefore essential that in all installations the designer/installer thinks about future proofing the technology so other new systems can be configured easily into the existing system, without compromising the overall integrity of the system.

4) Breaking the ice: The look and feel

Usability and aesthetics are critical aspects of anything that goes into someone's home. This is especially the case if it is a family home of many years and the user is used to the way it looks and feels. Much of today's technology is course and has the "wow" factor, and looks like it was developed in the 21st Century. This is fine for many people who are born into the 21st Century but not always ideal for people born in the early part of the twentieth Century who might object to these new gadgets. Moreover if the devices are too obvious they might trigger confusion or bouts of insecurity from the users. It is therefore important for the designers to consider and respect the person's views and wishes about the technology. It is also true that some elements of the technology today cannot be hidden, such as smoke detectors, and compromises might need to be made in all designs, but the design should be needs based.

5) Breaking the code: False safety

When explaining assistive technology devices, I have often been faced with the vision of people wanting everything, because they have bought into the idea that this technology could be of use to them, hence the more technology they have the better off the must be. Of course this is not the case, but it is easy to accidentally misrepresent the technology as something more than it actually is. I have often found people happily doing balancing acts that almost gave me a heart attack as I walked into the room, let alone what their friends and family might think if they saw what was happening. When questioned why they were putting themselves deliberately at risk of serious injury, I have often received the reply that "it’s okay... I know the technology will see I am alright... You know... all those smart gizmos". Clearly this is a false sense of security, but also a potentially critical one. If the person had injured themselves it could be construed that it was the designers/installers who were at fault for not explaining that the technology had limitations. ALWAYS explaining the limitations of what the technology will NOT DO.

A second point on this is the belief that the remote call centre will miraculously get someone to the user at the speed of light. Clearly this is not always likely to be the case. The UK needs legislation on how call centre's operate in relation to telecare as their operations do need to be rethought. The user also needs to be educated in the fact that it might take a considerable time for someone to call to see if they are okay. It is also important that the designer is aware of the various options that are set up in the eventuality of an alert arising. In many cases, especially where there is an older person living next door to younger people, the next door neighbours, or close friends are the first people to be contacted in the event of an alert requiring a home visit. Of course, it is fine to ask your neighbour to pop around and check but it is also important to alert the user that neighbours are people too, they can be out when they are needed, they can be ill, and they can get fed up and just not want to do it any more, especially if the alerts are being raised in the middle of their sleep period.

6) Breaking the bank: Maintenance Schedules and Costs

Just as it is important to ensure that the system is future proofed and interoperable it is also important to consider the costs and maintenance schedules. Clearly, for any company or installer it is always profitable to get the best contract, by which I mean the most lucrative, in a business sense. It is a real ethical hot potato as far as I am concerned, because the people who are sold the contracts are the people least likely to be able to defend themselves. Hence I would suggest that you at least take you take on these minimum set of ethical guidelines. Firstly do not tie the user into a long term contract that binds them to using just your services. If you have designed the system well, then anyone trained in systems support should be able to maintain the system, so make the user have choice whether to use your services or not. This also makes your own service more credible.

Secondly, do not force your client to always buy your 'preferred brand' if there is an alternative that could be used. Offer a choice. You will sell more by meeting their needs and the use reordering from you then trying to get everything in one go and running for the door. Choice can equate to better service.

Thirdly, it is important to consider the costs of failure to fix a product for a client. This might cause them considerable distress as every second they do not have the system working they might feel under stress and insecure.

7) Breaking away: Dependability of the Telecare System

Many common telecare systems provide minimal user interaction thus the user can raise an alert and talk with a remote call centre but little else, in a similar fashion to the community alarm. They are preconfigured to determine alerts based on user activities or lack of activities.

Many systems do not allow the activity patterns, the granularity of temporal differences and the person's own preferences to affect the system configuration, in fact most 'off the shelf' telecare systems predetermine what is to be measured and responded to and this cannot be altered. This generalisation of requirements means it is highly unlikely that all the needs of the user will be considered and reflected in the design.

The dependability questions as outlined in design guidelines and MDDS provide a framework with which to consider the efficacy of a telecare system. The key attributes and questions are shown in the following table:

When interviewed on Radio Scotland in 2005 I argued that if "I have a door bell I would expect the bell to ring when someone pushes the button. I do not expect it to ring when there is no one there". By adopting a dependability framework one can begin to ensure to ensure systems and people can be designed in harmony.

8) Breaking the limitations down: System Fallibility

Telecare systems have many weak areas which people do not normally publicise, as they wish the system to always appear perfect, but as an installer or designer it is important that you see it as your responsibility to highlight the limitations of the system. A limitation that is often overlooked is the ability of the system to track a person in their own home. Sensors are after all as fallible as all electronic wizardry and are usually designed to sense one thing (heat, light, movement etc). In systems which are designed to track a person around their house a series of movement sensors are most often used. These can fail if a person sits motionless in one place for a length of time. The can also fail if the user has visitors to the house. Sensors do not have the capability to determine which person is which. Although I know of a number of software pilot studies in the UK that are trying to crack this thorny problem, I have not yet found one that has succeeded to the degree that you or I would really be happy to rely on in our own home.

9) Breaking the Trust: Fault-Error-Failure

It is clear that the algorithms that have been developed and continue daily to be developed around the world to assist the lifestyle monitoring process as not 100% successful, in fact they have variable failure rates, these systems become the hub of the telecare system. Living as we do in the world surrounded by new technology, it is all too clear to many of us that we should be happy that these systems have been developed whilst treating many of them with more than a little suspicion. Would you put your life in the hands of a PC? NO? So why would you expect someone to put their life in the hands of software that might not have been tested as effectively as some of the software we have on our computers, that crash regularly? It is important to recognise that many of these systems appear to work, but the consequences of their failure could be critical in some circumstances.

The telecare system extends beyond the boxes and devices into the social world. In this real world scenario call centres come to play a central role in dealing with alerts and mediating between the user and the emergency services. As previously suggested, it is important that legislation is drawn up soon t protect the public from call centre failures. These do not take much imagination to foresee. A typical example that I have often used is the person, who I shall refer to as ‘Fred’, who every Friday night like to enjoy the typical British tradition of fish and chips. Fred has always had this to eat on a Friday and has always cooked it himself. Unfortunately, as Fred has become older his judgement has become slightly impaired, which means he regularly sets the fire alarm off because he has the fat too hot (or the fire detector is situated in the incorrect position). It would be unwise to stop Fred cooking his meal as this is the last connection he has with his recently departed wife, so the telecare system is used to monitor the alerts from the house. Of course, for six days a week only normal alerts are produced, but on Friday at five thirty in the evening the call centre receives an alert saying that the fire detector has been triggered in Fred kitchen area. The call centre will treat this as an emergency the first time it happens, but as the weeks continue; their ability to constantly follow up what they assume is a false alarm will become less and less urgent. The call centre might be forced to make a policy that on Fridays at this time they will deliberately ignore any fire alerts from Fred’s residence at five fifteen from a certain point forward. Of course the obvious then happens, Fred has a real fire and the call centre ignore it and Fred is severely injured.

Similarly, I have come across many other instances where false alerts can and will be triggered by certain technologies. Enuresis mat for example can suffer from people sweating in bed and producing a false alert to the call centre. Similarly many other common devices used in telecare systems have their own fallibilities and will in certain circumstances produce false alerts. It is going to be interesting to see how a call centre will react to these false alerts if they all come together, which is most likely as certain weather conditions can trigger many of these to produce imprecise readings at one time.

As a designer or installer it is a responsible thing to alert the user to the limitations of the software and to ensure they realise that it is not the same as a standard mechanical system - If you push a lever then the ball will roll down the hill  rather the telecare system is bound to be temperamental at times. In many ways they are almost human in that respect!

10) Breaking up: Putting People into the Equation

As a designer or installer it is often too easy to get carried away with the technological side of things and forget the little things that are important such as the person for whom you are designing. With telecare systems it is increasingly difficult to focus on the person with the external influences of the medical and social models that conflicts with the design/electrical skills the designer or installer might have. It is often easier to package people up into groups (older, disabled, ethnic etc) in order to be able to deal with them as it is more difficult to deal with their real difficulties and needs on an individual basis especially as people’s needs change sometimes very rapidly.

Yet it is crucial that one recognises that the people who are having the technology installed are doing so to enable them to have a quality of life. This DOES NOT MEAN that they should be forced to live under restrictions placed by the installation of technology. A number of instances from my research in the past immediately come into my head at this point. For example the couple who were married but told they should not be sleeping together as she was too ‘disabled’, or the couple who had door openers installed with ‘DOOR OPENER’ emblazoned on them in large letters (just the sort of thing you need in your living room!), or the couple who had a bespoke kitchen made for them with a fully raising and lowing cooker hob only to find the hob has controls that only the most dextrous among people would be able to use. Whilst thinking of the last couple I also remember the people who had a window opened installed which one day failed in the open position leaving their house compromised as the opener was out of warranty and the occupant’s could not afford a new one or to get it repaired. This then reminds me of the person who had a door opener to her bedroom positioned in such as manner that if she used it in the intended fashion the door would open onto her wheelchair. She was therefore forced to use a long pole to poke the door opener and then drop the pole and get through the door before it closed on her. It also reminds me of the many, many, many tied up emergency pull cords I have come across in my various evaluations, where the occupants have deliberately tied the cord out of the way so they don’t accidentally set the alarm off. At not point did they consider they might need the cord which reminds me of the woman who was over ninety and stayed stuck in the bath for six hours because she did not want to use the emergency cord as she did not want anyone to see her without being fully attired. I also recall the people who have had services reduced so they now lead almost hermitic lives as they see so few people. One of the reasons why I and my colleagues at Lancaster University have been developing the communications tablet software is to enable people who are isolated to have a form of communication on-tap when it is required.

I have also been luck enough to see the good side of when technology is used to support someone whose life would not have had much quality but through the use of technology their lives are transformed.

11) Breaking out: Moving beyond Technocentrism

When we design technology or install it, the standards we need to assume are such that we do not force people to live in an adverse manner. People should not be impaired or disabled by telecare (I remember first writing this about ten years ago). These ten “Breaking” points are the starting point to illustrate the need to personalise technology and especially telecare technology. It is essential that people are not restricted and assumptions are not made about them. I have often enjoyed reminding people I have worked with that many of the older people are still actively sexual, it seems that in the UK this is difficult for many to cope with, but there is no reason why people in their silver surfing years should suddenly cease to have everyday normal urges (remember this for enuresis mats).

People are unique. People are special. If someone came up to do and said that from now one everyone was to wear only a sack, I can imagine many of you being very put out, and if the person then followed this by stating the sack would be one that fitted a UK size twelve figure, I can imagine many people feeling that this would not meet their needs. So why should a technology system be any different? Why should an off-the-shelf system be a requirement for older and disabled people when everyone else would rather have a bespoke tailor made system that does what they want it to do?

Should we really be expecting people to use technology that produces false alerts? If your doorbell failed to ring it might not be a very bad thing, but if it electrocuted the operator then it might be a cause for concern. Can we expect call centres to retain proper effective strategies that will not potentially endanger the people that they are set up to protect?

12) Breaking in: What now for Telecare?

Telecare offers us the opportunity to take technology and enhance people’s lives, allowing them to do things they might not otherwise have done, allowing them to remain in their home, if the wish to. It allows relatives to feel more confident that their loved ones are being support when it is required. Telecare can provide some wonderful opportunities to enhance the lives of many people. It is up to us to ensure it does this and does not ruin them. To reiterate something I wrote in 2004 but still appears to have some validity:

So should we be alarmed by the rise in telecare systems? The answer is dependant on how it is deployed. Current ICES and the Audit Commission’s reports suggest that telecare implementation is a high priority and appears to be using standard systems for all. If this is the case then there might be potential problems in the future. If systems are designed to be individually ascribed to the person(s) who will be using them, then the chances of the technology being successfully implemented and used are far greater. If the technology is integrated seamlessly into the home, allowing only the precise predefined devices, carefully blended and positioned to be aesthetically pleasing whilst allowing the users to have some control over what they do, then things begin to open into an area where technology is being placed into people’s homes to support them, rather it is being integrated with their current lifestyle to support them in the way they wish to be supported.

It is also important not to be complacent and adopt a model that allows everyone to to use the same systems. We need independent systems for the assessing people for telecare systems. We need a wide variety of devices available for all authorities. We need devices that are easily installed, maintained, serviced and repaired without the necessity to be tied to excessive service contracts. We need technology that focuses on the person and assists in supporting the person throughout their lifecourse in the manner they determine most appropriate. Technology should not replace people and should not disable people. Ideally we should consider using smarter technology to assist people with complex impairments. Similarly, Electronic Assistive technology and Environmental Control Systems should be incorporated into telecare systems or at the very least compatible. We need a joined up service where people are not moving around their homes with numerous different control systems.

-The Technology Fix

Technology is ideal to support older and disable people if it is implemented and designed proficiently. Technology is an answer but it is not THE answer. Technology works best as a part of a package of care. It is easy to be drawn into the technology push and consider technology the answer to all ills in the world, but over reliance on technology can be the major cause of system failures. It is important to think outside the box and see technology as the last resort not the first.

-The Containment and Enablement models

It is important to distinguish between the containment model and enablement model of social care. The Containment Model contains older and disabled people by appearing to care about the person. This leads people to not challenge the status quo and accept substandard equipment and not challenge poor interventions. Technology is foisted on people using a spurious medical model suggesting the technology has pseudo-medical properties which it unlikely to have. Whereas the Enablement Model strives to ensure people are personally enabled.  Technological interventions are bespoke and tuned to the person’s actual needs and wishes.  Technology rejection should decline and a person’s quality of life should increase as a result of these interventions.  The telecare model currently being rolled out in the UK for example I would suggest is a Containment Model can be seen as a reflex reaction by the Government to the overwhelming statistics that older people will be the largest proportion of the UK’s residents by 2020.  The NHS cannot cope with the overwhelming demand that will be placed upon it, as it cannot cope with the current conditions, and therefore technology is being used as a simple, cheap form of pay off.  It removes care from the NHS by relocating it in people’s homes and therefore this care will be under the auspices of a new group of care providers who will have to struggle with poor technology and impossible targets.  When this system fails, as it will inevitably do so, the containment model suggest that this will not impact on the Government, rather they can blame the telecare operatives.  Similarly, in the UK although PASA, CSIP, ICES and the DoH have designated fifteen companies that they consider are suitable to provide telecare systems, a close look at these companies demonstrates that many of them do not provide whole systems, rather they provide  parts of the systems.  The following chart from the National Framework for telecare, (http://www.pasa.doh.gov.uk/telecare/Telecare%20Information%20Pack%20-%20Version%201%202_Oct%2006_2.pdf) demonstrates this effectively.
 

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According to this diagram only three providers offer an almost full service, so the "choice" is less than a full choice. I have also never managed to find how these systems were approved, what criteria were regarded as important and what evaluation criteria were used to determine which systems received approval. It feels that the Containment Model is effective and that purchasers of telecare systems are really given a very limited choice of supplier/provider. This is further compounded by considering the geographical supply of the equipment by the suppliers demonstrated in the following table.

So we have a patchy service that means that if you live in certain localities you have a greater choice of provider than in other localities. This contains the choice of the purchaser further. This gets even more incestuous as companies listed above can subcontract to other companies in the list in order to provide the service. As the document states "the 15 suppliers participating within the PASA National Framework Agreement for equipment and services, a number of the participating suppliers are working with other companies to provide equipment and services to the national framework agreement on a sub-contracting, third party or strategic partnership/alliance basis."

For a model to be enabling, real choice should be available and not restricted by geographical location or limited choices. Although I have no problems with the choice of suppliers and no axe to grind with any supplier of telecare systems my concern is with the policy of containment dressed up as enablement.

The Government, it could be argued, appears to be dressing up containment as enablement suggesting that they are providing choice and enabling technologies with a person centred approach. It seems that the person-centred approach is subsumed in Government rhetoric of containment couched as enablement. This is a shame and most importantly it is very worrying for all the UK population who are going to be receiving telecare in the coming years.

©2007 Guy Dewsbury,
SMART Thinking

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