Reopening the hornets’ nest - the terminology of telecare – the ongoing debate...

It has been some time since I wrote about terminology (http://thetelecareblog.blogspot.com/2010/01/language-of-telecare.html) but it’s funny that in the time since that piece was written things have moved on and new services have developed. I do not intend to repeat that blog entry but I think we need to have some common sense when it comes to the terms and their usage.  Maybe the discussion on terminology is old hat and not of great worth at this time.  Maybe the time is right to open the chest and peek inside....

I have already pointed out (in various papers) that the term ‘assistive technology’ has a range of meanings depending on where you live in the world.  In the USA, assistive technology is focused on the technologies that can be used to assist children in schools and with their education in general.  The UK meaning is very different.  Similarly, telecare in the USA is known as ‘Personal Emergency Response System’ (PERS) or ‘medical alerts’, whereas the actual term ‘telecare’ refers to a range of technologies relating to medical/health at a distance (which in the UK is defined as telemedicine and telehealth).

Telecare seems to be a catchall term. Breaking the word down, there is tele (distant) and care (the act of caring, providing care, providing a caring service, providing care for a person, caring for a person, showing you care). This can be contrasted with the word ecare, which has the same second half but the ‘e’ stands for electronic.  To contrast these two words, telecare and ecare we need to see the differences as one is care at a distance and the other is care provided through electronic means. Similarly, ehealth and mhealth differ by health being provided electronically (e) or via mobile services (m).

A key feature of telecare is remote monitoring, this involves people and technology (i.e. people who monitor the alerts and call the person generating the alert).  I consider a simple automated telephone service that has a set of predetermined responses is not telecare; this is ecare. Strictly speaking, it should not even count as ecare, but emonitoring as much of telecare and ecare is concerned with monitoring. 

The public need to be assured that what they are purchasing provides value for money and does what they expect. In ecare systems there are potentially no human interventions, whereas in telecare systems there are. Does the system have call centres where people speak to the person who has triggered the alert?  Do the call centres operatives also make decision on the best course of action (response unit, friends, family, emergency services, doctor, etc)?  The way that a service is described needs to be clear for the customer as their purchases result in a long-term commitments and cash outlays.

Current regulations do not cover the differing types of service and legislation fails to differentiate between the differing aspects of monitoring available.

I can see the benefits of all the differing types of monitoring on the market and strongly believe they each have a place and a level of merit.  What I am concerned about is that the language that is used does not allow for the differentiation that there is between these services.

Personally, I am not bothered what category a service fits under rather I am more concerned about the service they provide. Where I do get concerned is when services are portrayed as belonging to something they do not belong to, as this is a misrepresentation to the public.  The people purchasing a telecare service are expecting care at a distance, whereas when people are  purchasing ecare they should be aware it is all electronic.

I understand why the name telecare was derived, but I also think that this name should be changed to emonitoring or telemonitoring.   This way it says what it does on the packet.  I can also accept that if a telecare service has a full response unit that will be attending people in their home as part of the package then it might deserve the term telecare, but many services currently fail to even offer this basic service.

As a potential purchaser of telecare, for my mother, I suspect that when I look for the company that will be providing the monitoring and technology, one of the first questions I will be asking is does the services do what it says on the packet?  Is this a real telecare service?

I know the currently the UK Government is endorsing telecare through the Whole Systems Demonstrators and the 3millionlives initiative has spent considerably large amounts of money on developing and deploying telecare in the UK and there are now over 1 million people with the service, I suspect that if we redefined telecare to make it more realistic we will find the figures are very different. 

Taking Telecare to a new level

With the beginning of a new year, after considerable thought I have decided to take telecare activities to the next level. Having spent three years as a Telecare Coordinator for a London Borough and obtained excellent CQC reports for the service whilst in charge, and having worked as an academic for over ten years working in the field of telecare, assistive technology, smart homes, telehealth, ambient technologies, ubiquitous technologies, eHealth, mHealth, mobile technologies in addittion to my other interests in architecture and building design, health in general and of course people with long term conditions and disabled people, I now feel that the time is right for something new.

The Whole Systems Demonstrators (WSD) by the UK’s Dpeartment of Health (DH) has recently reported on its headline findings which clearly indicate a positive use of technology can save lives and save resources. There is little doubt that these findings will be scrutinised fully once the full reports are available, and at this point the headlines might not reveal the whole picture, but they are very encouraging.

We can now be confident that technology can save lives and resources, but we also need to ensure that the technology meets the needs and expectations of the people requiring it. It is important that as a result of using technology the person is not expected to become a machine, operating in unreasonable and predictive manners.

If you have a long term condition, your life is punctuated by regular events, such as taking medication, medical appointments, all the way through to the more chronic who might require assistance in all activities of daily living. What I consider unacceptable, is that technology designed to assist becomes the problem. This could be through making assumptions about people’s lifestyles and expecting unreasonable interactions such as checking-in every hour, or pressing a button regularly to stop an alert. This could also be through false alerts or just the technology not meeting operational expectations.

We are in a era which is really exciting. Technology is evolving faster than ever before and we should be able to harness this technology to enhance people’s live by removing barriers of distance, by producing virtual communities, and bringing virtual services through the cloud to people anywhere in the world.

My current concern is that although some electronic devices benefit from the advances in modern technologies, (eg mobile phones, tablets etc) other more mundane technologies, such as pendant alarm based systems or wandering sensors are failing to think beyond the standard.

We are entering a new year, 2012, and we have the chance to begin to create the world we want. A world where distance is not an issue, where access to products and services is far easier through modern technology. My hope for this new year is that we can get together and design products that will last, which have relevance and meaning to those we design for. This year could and should be the year of personalisation and innovation.

We need to stop waiting for tomorrow to create what is needed to today. We need to act now!

We need to change the way we think about products.

We need to change the way we think about services and service provision.

We need to change the way we think about technology and we need to change the way we think about people.

We need to step away from the tick box solution.

Let’s make Person-Centred Design truly person-centred!

It is with these messages in mind that I have started a new business called gdewsbury which is a Freelance Specialist Technology Writing Service and Consultancy (gdewsbury.com) with which I wish to work with the cutting edge businesses to assist in the build and design or truly exeptional products and help small or new businesses become great through expert input.

This is the year to take telecare to a new level.

Wondering about wandering

Wondering about wandering

It is a while ago (2008) that I proposed the enablement/containment models as part of the Dependability Telecare Assessment tool (DTA) (http://www.smartthinking.ukideas.com/telecare.html and http://thetelecareblog.blogspot.com/2008/09/enablement-and-containment-models.html) in which I proposed that technology should enable people not contain them. So, 4 years on, I now turn my attention to those who have supposedly been enabled.

In the UK, there are a range of safeguarding structures in place to enable and ensure that a person has basic human rights and the ability to live an unfettered life. Locking the door on a demented family member was the option of a bygone age whereas today people are faced with the difficulty of ensuring the safety of a person who does not have capacity.

From a telecare perspective, there is a range of devices that are on the market that provide one or more of these four features:
1) to alert someone in the house of a person wandering
2) to alert a call centre when someone wanders
3) GPS based bespoke devices that can map where a wandering person is (as long as it is charged and with the person)
4) mobile phone based GPS/GSM systems that provide mapping and voice communication.

So, I am wondering, which is used today and which actually work effectively?

I recall, when I was working in a London Borough, that alerts to a family member in a house were the most effective, followed closely by the alerts to a call centre. But what is being used now and are they really effective?

I recall the problem with GPS tracking devices was that they required regular or daily charging and from what I can see this is still the case. Is their use limited to people who have family close by who are prepared to charge the devices? Additionally, you have to have the foresight to put it into a coat pocket or handbag so the person has it with them when they decide to wander. However, most people highlighted in assessment I did in London, were wandering at night partially clothed.

This means that through the safeguarding and enabling initiatives that have happened people who wander, be they older, younger or middle aged are left with few realistic alternatives. So how does this play out in the real world?


Enabling Who? - The real questions
Are friends and families put under more stress and strain to covertly contain their loved ones by locking them in and not telling anyone about it?

Are friends and families put under more stress and strain by providing their own 24-hour watch of the loved one?

Are families reliant on the telecare alert directly to them so they can drop everything and go looking for the missing person.

Has the responsibility for locating missing people been delegated to emergency organisations such as the ambulance or police services?

Has the responsibility fallen on social services to provide more care and assistance to the people who wander without friends or families?

I wonder, are the wanderers left to wander, and only after they have wandered several times with potentially dangerous consequences, are they then forced into a more contained environment where they cannot wander?

In the news, there is talk of tagging people with GPS type devices or ensuring that it is difficult for people to leave a property without actually stopping them. Both have drawbacks, the former being that this might not be consensual or hard to get agreement from families, and the latter might appear the best solution until the house is on fire and the occupant cannot get out.

I wonder is there another solution?

I wonder what is happening in the real world?

Is enablement the new containment?

Is telecare colluding in this containment in any way?

Choosing a telecare mobile phone

The telephone is a simple device that has been with us for many years in various forms. In recent years it has undergone some considerable revolutions allowing hands-free communication, number identification and a range of other features to enhance the experience. For older people, big button phones appeared which were ideal for the visually impaired and phones with loop settings aided the hearing impaired.

The mobile phone is a new development for many. Although most people have a mobile phone, their potential is often not realised. Just as Microsoft Office can do amazing things most people use it for typing things and generally use only a fraction of what it can do.

It seemed to be a good idea to think about phones. Phones make and an ideal gift for parents who are less than tech savvy. The mobile phone has changed so much and continues to evolve with new models three to four times a year. As Steve Jobs understood, the traditional computer is less likely to be developed as handheld mobile devices are likely to proliferate the market. This could happen if the experience of the person using the mobile is equal to their expectations.

I have a confession, I love mobile phones and am passionate about the variety available and which is the best. When it came to my upgrade, I spent months working through exactly the specifications that I needed from my new phone before making the decision.

The mobile market is interesting as it currently has four main operating systems: Windows mobile, Apple IOS, Android (from Google) and Blackberry which are available on the mass market.There are other operating systems out there but these are the big four.

Each operating system has its own usability issues and positive and negative features. The phone manufacturer can also add the the features as can your phone operator by limiting some functions and expanding others, so already you can see that the choice of phone is very difficult.

The mobile phone makes a potentially excellent telecare device. The difficulty is matching the phone to the person. There are a range of simple display phones available. There are also phones with clear well defined keys to enable dialling. There are large displays phones which enable people with visual difficulties to see what they are dialling or writing and loop phones for the hearing impaired, but are these telecare phones? There are a number of mobiles that provide dedicated digits or an extra button which can be dedicated to sending a call through to a pre-specified recipient. These can be useful as long as the person using the phone has the capacity to operate it when required and will operate it.

Mobile phones have a range of other things that might be worth considering. Applications, or apps that can be downloaded from the operating system provider and can be very useful for making a phone into a medical device or reminder system, ideal for people with medical conditions or memory problems. Each operating system has its own apps and it is worth considering the apps available before buying a phone, similarly the ease of downloading them and the reliability are key things to think about. Viruses and malware are problems with smart phones where you can download apps to and the operating systems way that they deal with malware and viruses is also something to consider prior to purchase.

Location, location, location... Many phones have simple location devices built in and most smart phones have a range of locating software built in to the phone which can be used to locate a lost older person and provide a map home (if maps are built in and preprogrammed). Having maps and location properties on a mobile is only the beginning as the actual software that comes with the maps might be too difficult for the user to use so actually playing with the location software is very important in the decision process.

Gyroscopes and accelerometers can be built into phones which can be set to alert a friend or family when someone falls. These are a great idea and well worth exploring but always test the functionality of them before purchase. Do they trigger false alerts? Do they not work when someone actually falls? These conditions can easily be replicated in a shop. It is also important to consider the alert call that could be produced and who is to respond. There is no point in living a long way away and being the first call number, ideally a neighbour or a call centre would be be better, as speed of getting to the person who has fallen is most important, but read the blog entry on fall detectors before considering purchasing this on a phone.

The downside to location services and fall detection is the additional battery usage. As phones have become smarter, more applications run undetected, in the background, constantly working things out, such as where the phone is and at what angle is. All this background data analysis consumes battery life and timely changing of a mobile phone is a critical feature for modern smartphones. Although the battery life that the manufacturers provides are accurate, they are before any applications are downloaded and location and other services are activated. If you want a phone with ‘bells and whistles’ you pay with battery life, so expect to charge the phone daily. This can be a difficulty for some people so the capacity to do this is essential.

Sound quality, network coverage and ability to use the phone are actually the most important aspects to consider in a phone when purchasing it for someone else. A good phone should enable a the person to make calls easily, be able to hear the person they call and have a call go through from where they live without needing to go outside.

Finally, don't forget about the cost of calls and network coverage, the smarter the phone and the more things it does the more likely it will use more bandwidth even if no calls are made as there will be a lot of things sending and receiving data on the phone so ensure the package is one that enables the person to use the phone as they would like.

In sum, a mobile phone is potentially a very good telecare device providing the ability to alert others when a difficulty arises, but just because a phone sounds good does not mean it will be the correct phone for the person. Hopefully, issues already addressed in this blog will help in the decision process and this entry has highlighted the main things to think about.

Telecare Efficiencies

One of the main reasons for the use and uptake of telecare is the potential efficiencies it brings. Efficiencies is a euphemism for cuts or savings not the alternative meaning of improving something. This does not mean that by making cuts something could not be improved, simply, this is not the main agenda.

This blog is testament to how efficiencies can be made whilst ensuring the quality of service and care are not reduced.

Telecare can save money, there is considerable evidence to back this up, but it can also waste money. Wastage is most clear when a predetermined set of telecare devices are used as a standard response to a specific condition. This can often mean redundant and disabling devices. Person specific telecare should ensure mean no redundant devices, thereby saving unwanted devices and their potential running costs.

The personalisation of telecare should enable efficiencies through enabling people and promoting healthier behaviours. For example, a woman who had fallen badly several times and been lying on her floor for many hours before being discovered by her daughter. As a result of this fall she sat in a chair all day too scared to move in case she fell again. The provision of a simple telecare pendant meant she no longer felt she had to remain seated. Moving around was now permitted as she could call for assistance in the event of a fall. This is constitutes efficiency and true enablement. Efficiency as all that was required was a pendant alarm. Enablement was through the woman not spending her remaining years sat in a chair. For this woman telecare meant independence. Clearly the hidden savings are in other health related spending as a result of sitting all day and not moving. Over the forthcoming years that could be a seriously large amount of money for this one person.

The most effective efficiencies are derived through assessing people correctly for telecare and ensuring that team that provides the telecare works well. This means the processes and protocols are in a coherent workable form. It also follows that they need to be easy to implement and follow just as audit trails are required to be evidenceable at any time.

The telecare service provision is most likely to be riddled with policies and procedures that either do not exist or outdated and this directly causes inefficiencies. Inefficiencies equate to throwing away money and poor customer service. These inefficiencies can be riddled throughout the whole service including response services and the sales teams.

The increase in telecare

With the release of the UK government’s “Equity and excellence: Liberating the NHS” document the emphasis for health promotion falls on GPs as they will be getting the vast amount of money from the dissolution of the PCTs (Primary Care Trusts). This really interests me. When I worked for social services in North London, I found that GPs were by and large a very difficult group of people to interest in telecare. Actually finding access to their forum was hard and harder still to get any enthusiasm for the potentials of this new technology.

It seems that with the release of this document and the fact that the commissioning of services will be undertaken predominantly by GPs in the future that they are going to need a crash course in telecare, telehealth, mHealth and eHealth.

So how is this going to happen?

Who is going to do this?

The only way that this can be done is for telecare to be included in the documentation that the government produce but it is nowhere to be seen.

If we are to follow the preventative agenda, then surely telecare must be the spearhead of changing the way we consider health and care. Ideally as a result of the proposed changes and the distinct lack of money in the UK it behoves all GPs to get tele-trained pretty quickly.

I can see that this should also not be something that comes from the manufacturers as this could bread suspicion in GPs rather I can see a role in this for the TSA (Telecare Services Association) as well as the government to bring this information to the desktops of the General Practitioner of tomorrow. But before this can happen, how are can the profile of telecare be raised to such an extent that GPs will actually begin to take a message on board that they have resisted for the last five years?

Any answers gratefully received!

The Language of Telecare

"When I use a word," Humpty Dumpty said in a rather a scornful tone, “it means just what I choose it to mean --- neither more nor less."
"The question is," said Alice,"whether you can make words mean so many different things."
"The question is," said Humpty Dumpty, "which is to be master--- that's all."
Lewis Carroll – Through the Looking Glass.

I am not sure about you, but I think it is time to resurrect the debate about terminology. I have recently been to a number of conferences and at these events people use the words Telecare, Telehealth, Telemedicine and Assistive Technology interchangeably. The speakers seem to appear confused because they are using the words Telemedicine when they are talking about Telehealth and Assistive Technology to mean anything and everything. The term assistive technology (AT) seems to have become an umbrella term for Telecare, Telehealth and Telemedicine which is a little strange as AT is so much more than these small bits. It denigrates the words Assistive Technology. AT after all comprises of environmental control systems, speech helpers any form of technology that can enable an impaired person (http://en.wikipedia.org/wiki/Assistive_technology).

I am not sure that Telehealth enables people in the same way that Telecare does or even qualifies to fit under the banner of Assistive Technology. If you look to the right hand bar I have the definitions of Telecare and AT as: Telecare is the continuous, automatic and remote monitoring of real time emergencies and lifestyle changes over time in order to manage the risks associated with independent living (http://www.telecareaware.com/index.php/what-is-telecare.html).

I would argue that Telehealth monitors patients' health and alerts professionals of possible emergency situations but in a very different mode from Telecare. Telecare produces alarms; it sends real time alerts through to a call centre 24 hours a day; 7 days a week. Telehealth produces less frequent monitoring intervals and the information is sent to staff who are only working when they are at work (often 37½ hours a week). I would also argue that Telehealth does not manage risks associated with independent living, rather it manages peoples' health conditions and possible health deterioration. Therefore, Telecare and Telehealth are significantly different.

On the other hand Assistive Technology (AT) is any product or service designed to enable independence for disabled and older people. (King's Fund, 2001). So Telecare is a small subset of assistive technology. It is not the whole spectrum of assistive technology. Hence, when referring to Telecare, one should use the words Telecare not assistive technology. "the smoke detector is a vital part of assistive technology" is more accurate as "the smoke detector is a vital part of the Telecare repertoire". "Johnathan was helped through the use of assistive technology, the use of augmentative and alternative communication software enables him to communicate for the first time in class". If, for example, I worked with Assistive Technology, I would expect to have some medically training, to have a qualification in engineering and have undertaken the training associated with all people who work in this field. These are very highly skilled people who have years of experience and expertise to offer.

Keren Down from FAST (www.fastuk.org) puts the explanation beautifully “The confusion seems to arise due to the fact that assistive technology is not a term fitted for day-to-day use and that it has been used in very specific (service defined) contexts. It is a term well fitted for strategic planning. An analogy is the term ‘transport’. On the whole people don’t say ‘I’m going to go and take a transport up to the Elephant and Castle’” (http://www.telecareaware.com/index.php/telecare-telehealth-terminology.html).

I would also argue that Telehealth does not fit with the AT definition. Telehealth does not per se actually “enable independence for disabled and older people”. Telehealth supports older and disabled people’s health conditions. I would agree that by these conditions being stabilised the person might be more likely to be independent but this is a by-product of Telehealth not a given. There will be many very sick people who will have their conditions monitored by Telehealth devices in the future but who will not be enabled to be independent as they are too ill.

To me, Telehealth is like a heart monitor people wear at the gym, it is there to monitor fitness where as AT is the machines that people use to get fit. No matter how much you wear a heart monitor it will not make you fit but using the exercise machine will. The gym on the other hand could be considered to be assistive Technology comprising of lots of different component parts.

I think that it is really important that we all understand the basics, and all speak in the same language. If we assume people understand the terms we use then we are making an Ass out of U and Me!

You may not feel that terminology is something we should get het up about, we all 'sort of' know what the person is meaning, but I would argue it is critical! If I am talking to someone about Telecare and they think I am talking about patients in hospitals not people at home, then we start from completely different places. Anything we say after that is interpreted in terms of the initial impression. When I go abroad or talk to people from other countries it often takes a long time to ensure we are both talking about the same thing and understand the words in the same way. If we fail to do this then a conversation can be futile or even dangerous depending on what the other party takes away with them.

So instead of being Humpty Dumpty who states “When I use a word…it means just what I choose it to mean --- neither more nor less” let us use a word to mean what it means, nothing more, nothing less. Moreover, let us ensure that we put pressure on the powers that be to reach clear definitions of the words we need to use… Assistive Technology, Smart Home, Telecare, Telehealth, Telemedicine, e-Health, e-Medicine, mHealth etc. If we don’t decide what they mean soon it will be too late. It is time we master our language within this field.