Telecare - the interoperability issue revisited

 
At a recent Athene meeting I discussed the idea of interoperability and in so doing thought it might be wise to share these thoughts more formally.

When telecare was conceived, it appears to have been considered as a reactive, rather than proactive technology that generates alerts after something bad has happened. It does not stop falls, or stop anything, but can generate rather vague alerts which can go through to a call centre or a family member. That said it can also produce false positives which can and often are very annoying for family members.

It, therefore, seemed appropriate that one of the key concerns of telecare is that it should be interoperable, by which I mean I can take any piece of telecare and it will connect to any other piece of telecare irrelevant of who made it, in a sort of plug and play way.  This is also a legacy of the smart home/home automation KNX association which provided the world’s only open standard an interoperability standard for smart buildings which are compliant to EN 50090, EN 13321-1, and ISO/IEC 14543. Interconnectivity would do away with the need for connecting boxes, extra wire and potentially making less dependable systems.

Continua Health Alliance  and many other organisations and groups (see http://projecthydra.info/wp-content/uploads/2012/07/Standards_Project_Hydra.pdf) have been set up to explore the relative merits or interoperability, but as companies might say how much they are in agreement with this idea, it is not is their business interest to allow their own devices to connect to someone else’s. If they did allow this then certain monopolies would potentially come crashing down. Instead, we are left with a faint nod to interoperability whilst ensuring that the top players in telecare and telehealth retain their throne through not allowing other devices to connect easily.

If we look to the emerging mobile market, there are currently three main players, Apple, Google and Microsoft, with their iOS, Android and Windows mobile operating systems. These systems allow companies to make apps for these devices, and apps which are written in C++ and HTML5 are often easier to cross platform. What is interesting about this is that one app, can be cross-platformed to a range of mobile devices and even have standard computer based versions as well. A good example of this is the game ‘Angry Birds’ which can be played in the browser (Chrome) as well as through Facebook, as well as on most mobile devices.

If we consider what we actually want from telecare in the future, it might not be the reactive containment model that currently exists, instead we might want a more flexible proactive technology that can predict and prevent falls, or unexpected difficulties etc. This, I am sure will come through the mobile platforms, in the near future, with people having mobile devices which have sensors monitoring actions and activities in the home as well as outside the home. We will hopefully dispense with anything we need to wear, such as the pendant, and have unobtrusive sensors built into everyday artefacts and clothing. We will hopefully develop systems in which the data is more usable to the person with health conditions so they can sensibly make their own rationale decision on their health state, as well as alert the correct people if someone is in crisis without direct intervention.

I also see the rise in robots as interesting, but wonder if this is the actual way we want things or whether the building of robots is actually a step in making technologies more intelligent and more honed to our future needs and wishes. 

There are always utopia's and dystopia's, and the reality will possibly somewhere in the middle, but I can see that mobile platforms provide a valuable reference to build and new telecare world in which the person is not a passive recipient of care. This change in the way of seeing telecare does require a large change in the way we see telecare and consider its merits, but I think that it is evident that we need to take things to a new level.

So what is the next step? 

I hope that someone from one of the big companies, be that Microsoft, Apple, Google, IBM, Philips, Bosch, Samsung, Nokia, HTC, Backberry etc read this and like some of the vision and start to run with it.  I, of course, would be happy to add some assistance fin this venture. 

So we need to move away from interoperability thinking and instead consider cross platform mobile devices which are proactive and reactive.  We need to have devices that are what people want and will use that produce real information that helps the person as well as the health professional.  We need a cultural shift in the thinking of telecare and telehealth to embrace this new thinking, and we need the big IT/mobile companies to take up the health and social care challenge today so we can start to experience it before it is too late.

What do you think?

The world's most digital health service - the NHS?

There has been a recent spate of articles alluding to the NHS becoming the most digital health service (see http://www.telecareaware.com/index.php/the-nhs-to-become-the-worlds-most-digital-health-service-uk.html).  For over ten years I have been listening to people telling me that the NHS is to become paperless.  To some degree I think it will and it has, but I am always alarmed by the notion of a paperless office or paperless business.

I do as much as I can on line, this is not because I do not keep paper records, because I do, rather it is because there is insurance from storing things online and completing things digitally, which is the digital footprint.  When I pay a bill online, I leave a digital footprint behind, and I receive online confirmation as well as, in most cases, an email confirmation that the bill is paid.  For me, this is a double insurance policy that I have two forms of proof of payment. This is traceability.

The addition of cloud services have allowed me to use online storage space to keep track of important data which I might require wherever I am. This storage means I can access my data wherever I am located as long as I have an internet connection.

This same principle is used in the new NHS. People can stay at home whilst their medical information is in virtual space.  This allows health practitioners to undertake virtual consultations, and telehealth some products to function appropriately. 

I fully embrace the digital health record and the ability for my health data to be shared between practitioners at a touch of a button.  All this is brilliant.

What I am concerned about is what happens when electronic data is corrupted or lost - when there is a critical failure.  The necessity for paper backup data is even more important if we are to use paperless working practices.

When I worked for a local authority, as well as when I worked for universities, and even now when I work from home as a writer and consultant, I require data to be available 24/7 and in a range of forms. In the event of a power failure, I have back up power from the batteries in the devices, this is limited but does allow me to continue working. I have things stored offline as well as online so I can refer to the most important data whether power is on or not. Similarly as the Internet is prone to being hacked or ISPs crashing off line printed data is critical to maintaining my working practices.

There are so many difficulties with relying solely on the use of online data and online data storage that it does not require me to even start to describe them, but it is important to realise that although online data is preferable in many cases the limitations within the health arena are many.  A good illustration of this is the use of Xrays or MRIs which provide images to the Dr’s desktop within minutes.  This allows the Dr to make a speedy diagnosis.  If this were changed to pictures of moles looking for cancerous indications, this will depend on the quality of the camera image and the screen image to make diagnosis a possibility.

As we increasingly rely on health technology, such as telecare, telehealth and mHealth systems to be used to support and ameliorate care in the community it is critical that the powers that be understand the areas where critical failures are likely to occur and take steps to prevent this causing a system that could work well from crashing.

So digital future is good as long as the paper is available to keep it from failing.

Taking technology to the people

For those who do not or have not read Telecare Aware (http://www.telecareaware.com/), I would recommend it for all the latest in news on telecare and telehealth, mhealth etc.  

A recent soapbox on telecare aware struck a chord with me. In this soapbox (http://www.telecareaware.com/index.php/telehealth-soapbox-when-the-elephant-in-the-room-has-no-smartphone.html) Carolyn Thomas, whose blog Heart Sisters (http://myheartsisters.org/2012/10/10/no-smartphone/)  proposes that evidence suggests older and disabled people are the least likely to engage with or use mobile technologies such as smartphones. My own experience of working with people over the age of seventy also bears this out. For many smartphones are too complex to understand, have too poor screens with too small fonts and do not have ringers that they can hear. In fact, it was precisely this reason why I wrote a book on mobile phones specifically designed for seniors (http://www.amazon.co.uk/GUIDE-BUYING-MOBILE-PHONE-ebook/dp/B007U5VG0G), which features easy to use phones by emporia and Doro among others manufacturers. 

The emporia Elegance easy to use phone

Easy to use mobile phones have large fonts, loud ringers and are as they say on the box, easy t use. For many people who are venturing in to the mobile phone market an easy to use mobile is the best introduction to a no-nonsense phone.

Returning to what Carolyn Thomas was saying in her soapbox for Telecare Aware her main thrust was that the UK, and in fact many other countries as well, current health policy relies on the introduction of health apps or widgets to enable the person to monitor their own health and control their own health.  The soapbox suggests that if the people to be targeted and of most need are the older and disabled then these are precisely the people who will miss out as a result.  Older and disabled people do not, by and large, use smartphone or tablets and therefore do not use apps/widgets.

I appreciate the argument that in due course, the older population will be from our age group who are a little more tech savvy but I think this is a little short sighted as an argument. I am all for mhealth and the use of apps/widgets but only as applied appropriately to ensure that each app/widget meets the needs (be they health or whatever).  This made me think of the DTA tool (Dependability Telecare Assessment) and how this can be applied to this form of technology.

DTA

If the DTA tool is used to consider health related apps/widgets for older and disabled people then this app/widget would most likely fail the first box of Fitness for Purpose. Health apps or widgets cannot meet the broad needs of and older or disabled person unless said person has a platform to run the app on which they are confident to use.

I would suggest that many apps/widgets that I have tried actually fail the second category or Trustworthiness as many offer generic platitudes rather than bespoke advice or information. For example If I look up Multiple Sclerosis on many health apps/widgets, I get a lovely article on the origins of the condition and often some rather worrying lists of possible symptoms and how it is diagnosed etc, but there is little written on having MS and fatigue.  For this, you tend to get referred to the fatigue section that talks generically about fatigue. Now, for anyone who experiences fatigue, I am certain that most will recognise that there is a spectrum of fatigue from the “I am tired” stage through to the “so exhausted I cannot press a button”.  Within this spectrum there is a possible infinite number other forms of fatigue.  Some are a direct result of the MS possibly, whereas others are might be as a result of the medication that a person is taking.  I have not seen an app/widget that asks for your full medical history and can compute the possibilities of having multiple conditions and how they interrelate to each other.

Health apps and health widgets

A further problem with many apps/widgets I have tested is that they often over egg the pudding, by which I mean they can make simple conditions into mammoth issues for the person, by instructing them to seek medical assistance immediately.  For many people this is very distressing and can make the use of such apps/widgets less likely in the future, but for people who already have conditions which are debilitating this can be the last thing they need to hear.  Moreover, for the doctor/health professional who actually sees the person as a result of the app/widget this is extra avoidable work that could and should have been avoided. So we have stressed out the patient and the doctor... not a great start.  This means that many apps/widgets are less than 100% reliable and could be classified possibly as dangerous as they will raise the blood pressure when a false positive is received.

Moving to the third column of DTA I would also argue that many of the apps/widgets are unacceptable and not very usable for older or disabled people, so we have some serious flaws in the over reliance on mHealth for this client group.  In fact I would suggest that this might increase risks of premature fatality if rolled out to older and disabled people on mass without a proper trial of each app/widget.

David Shaywitz seems on the right track in a recent article he asserts:

“The danger is that if we don't find a way to recognize, express, and capture the value of the human connection in medicine, we are unlikely to preserve it, and it will become engineered out of healthcare - at least until an entrepreneurial, humanistic developer appreciates just how important and valued such connection can be.”

http://www.theatlantic.com/health/archive/2012/10/humanism-in-digital-health-do-we-have-to-sacrifice-personal-connections-as-we-improve-efficiency/264325/

  

I must admit I personally do believe the only way forward with health is through the appropriate adoption of telehealth and mhealth, but I stress the word appropriate. In the same way that telecare should be personalised to the individual’s needs and wants; mhealth should take this same baseline.  I am a techie person; I own a smartphone, a tablet, a laptop, MP3 player etc, but I want technology to support me to achieve the best from my life, not dictate to me my life.  I want apps and widgets that are bespoke to me and my personal situation/condition, not some generic half baked app/widget that fails to diagnose.

We need to stop focussing on what technology can do and start thinking how technology can be of use to us in supporting and promoting our lives without us modifying how we live to any great extent.

Why don't we have interoperability of telecare devices... yet?

One of the old chestnuts within the telecare arena is the idea of interoperability.  Interoperability simply means that technologies can work together, thus a product by one manufacturer can be used with another manufacturers kit. A simple analogy would be that a Microsoft Word document could be edited on on a PC as well as a Mac computer.

In telecare terms this would mean that I could buy a fall detector from one manufacturer and it should still be configurable with another manufacturer's alarm system. In reality, this can usually be simply done through the purchase of a bridging device, but interoperability should mean that this device is no longer required.

I am mindful of the recent courtroom battle between Apple and Samsung which upheld Apple in the US but nowhere else in the world as the designers of the iPhone and iPad appearance and software. It is interesting to me as I am writing this on a netbook with Windows XP installed, whilst having an Apple device flash emails arriving to me.  I also have an Android smartphone and and Android tablet on this same desk providing further alerts and noises.  I know I will never miss any critical information with all this technology, but the time spent sifting through the rubbish to find the golden nugget is considerable. It is questionable whether this venture  is actually worth the effort.

I stray to illustrate that today we have a range of technological options open to us and we have to decide how we progress down the technological route.  For computers to write type on  I prefer Microsoft products but I also have a  keyboard for the tablet computer  and occasionally use that to edit things on.  The tablet has its own excellent touchpad keyboard as does the smartphone so I can actually edit documents and other things without the need for an external keyboard.

I use the cloud providers of free storage to store current active documents so they can be accessed anywhere on any of my wireless device. I also use the cloud to share documents with other people I work with, so they can edit them or review them. Thus if I am in McDonald's I can still access my email and edit a paper whilst sipping my Coke.

So what does this say about interoperability? Well it is interesting, to me, that although the devices are not per se interoperable, certain things on them are.

One source of interoperability is Bluetooth, which enables all my devices to link together or link to portable devices such as keyboards, mice etc.

A second interoperable source is the cloud providers allowing access to all my stored files on any device, as long as the operating system is compatible with the cloud software.

I have similar software on all my devices and Skype is a great example of a cross platform software that operates on almost all platforms.

So I am thinking to myself, I have a mobile phone that can communicate with everything else, I have an Apple product that does this as well and a netbook that also does this, and a Nokia Symbian smartphone that also does this, that I no longer use,so why can simple telecare devices not make use of the advances in technology to allow proper interoperability?

I am fully aware of the Continua group and think what they are doing is great, but it is no longer rocket science.  Devices can communicate through Bluetooth or Zigbee, or infra red or wirelessly. Software can be made to be cross platform so each operating system can use it, so why can I not use the fall detector I think is best with the dispersed alarm unit I think is best and add the best peripherals to this?  Why are we still faced with no choice? we are committed to buying a system from one manufacturer and then we must purchase on their peripherals with the limitations that they have.

The customer is left with little or no choice.

I am staggered that the mobile product market is rapidly expanding but the telecare marketplace appears stagnating in comparison.

How can we reverse this state of affairs?


How can we make telecare interoperable and usable?

DTA a working example - falls

DTA - an illustration of how it can be used

The problem
Mrs J has recently had a stroke which has left her with a weakness on one side. She has limited capacity to comprehend the consequences of this weakness and falls a lot whilst trying to do normal activities. She recently fell getting out of bed on the way to the toilet at night and also in the bathroom whilst getting off the toilet. Mrs J wants to be independent and feel safer whilst undertaking her daily routines.

The solution
Mrs J was given a bed occupancy sensor, pendant, pull cord in the toilet and a smoke alarm.

Rationale behind solution
This is a simple case in many ways, the main presenting issue is that of falls as a result of weakness resulting from the stroke. If we consider DTA we can see that we are meeting the dependability criteria by offering this solution.

(Click on Picture to make bigger)

The solutions provided are fit for purpose; they are portable, when necessary, comfortable, will work as expected in the appropriate manner and in the correct time. They are trustworthy as they are reliable, will promote safety and not cause danger and are simple to service and maintain. The solutions were acceptable to Mrs J who does not want to be bothered with technology but is happy to wear a pendant. The solutions are practical, require no learning apart from the pressing of the button on the pendant or pulling of the cord in the toilet; and the solutions are compatible as they are all provided from one manufacturer. Mrs J was concerned about the aesthetics of the pull cord but considered that her safety was of more importance than the look of the cord in the toilet and was happy that the placement of the cord was exactly right for her to use if she had difficulties in the toilet in the future.

This example ticks all the boxes for each product. The smoke detector was added as Mrs J could be compromised in the event of a fire in her home. She might fall whilst trying to vacate her house in an emergency situation. The replacement smoke detector replaces her current smoke detector but is positioned in the correct place in her hallway and provides an audible alert as well as alerting the response centre that there is a potential fire in Mrs J’s property.

Note: this page originally appeared on  Friday, 7 August 2009 and has reappeared through demand. If you want to know more about DTA please contact Guy on gdewsbury @ yahoo.co.uk for more information.

More on gdewsbury

The gdewsbury freelance consultancy and writing service (www.gdewsbury.com) has now been in business for a while and is pleased to announce it is registered with the Assistive Technology Practitioner Society as a Specialist Assistive Technology Practitioner.

As a consultancy gdewsbury work with small telecare and Assistive technology companies to develop their business plans and strategies. We are also developing Telecare training courses which are designed for care organisations.

The consultancy still writes articles such as the TechTalk column for Disability Magazine and various other journals and websites.

If you think gdewsbury could be of help to you or your organisation please get in touch by emailing gdewsbury@yahoo.co.uk.

Tick Box Telecare - its coming to you...

Tick boxes are a standard method used when undertaking large surveys.  In research, the tick box serves as a method of gaining quick opinion on a certain subject.  This opinion is then translated into some form of quantitative statistics and presented in a report.  Tick boxes are not the most reliable form of data but they are a quick form of gathering statistical data.

 

The tick box approach is really useful in other circumstances.  When undertaking a new task, a tick box or checklist is a useful memory aid to ensure you have completed everything you need to do.  Just as we use shopping lists to help us shop the checklist is a useful prompt.  The tick box also can be used as a form of evidence, demonstrating someone has completed all the stages of something, although it does not show the quality of how they completed it.

In a telecare assessment, the tick box can be really useful as a guide to the things you need to discuss and consider in the assessment.  It can serve as a memory jog or prompt as well as a tool to ensure you have covered all bases. 

The tick box is of course not without its limitations and problems. 

One clear issue is that the tick box will focus the assessor’s attention on the elements mentioned on the list and therefore the assessor could fail to think outside of these elements.

An OT colleague mentioned one of the benefits of the tick box assessment enables detailed information in a short format but it should always have the space to provide additional information to give a full picture. This is the qualitative material, such as the client has stairs but no stair rail or bannister.  These important factors could have significant bearing in an  assessment for telecare.

This is an interesting point.  A standard tick box approach often leaves little or no space for the extra information.  The rationale for this is that this information cannot be coded so it is best omitted. 

point 1 - This is the real core information that should be recorded, so any tick box approach to telecare must have boxes for providing extra information.

The recording of information is often based on ease of processing rather than ease of collection.  So although a tick box might have additional space for comments, there is no guarantee that these comments will be used at a later stage.

point 2 – all comments boxes should be given equal weight in the processing of the information. 

Thus, armed with a tick box telecare assessment which has space for comments, the assessor begins the assessment. Where are they? Are they in the office speaking to someone on the phone or are they are actually at the client’s house? 

I suggest that it is almost impossible to undertake a telecare assessment over the phone. No matter how detailed your questions are, you will never get the level of information required to complete a true full assessment.  You will not, for example,  be able to accurately determine if a person has difficulty walking – I accept that you can ask the person – but many people are unable to rate themselves accurately.  People tend to over or under exaggerate their abilities.   It is difficult for the most experienced OT or social worker to determine accurately whether someone does or does not have mobility issues over the phone.

I accept that the current culture suggests that the responses of the client are often all that is required as proof, so if a person does not have insight they require assistance with mobility then , according to this argument, they do not... until they are found in a heap on the floor, suffering from hypothermia. This attitude is similar to asking a person over the phone whether they attacked their partner – I doubt many social workers would be happy to accept the response over the phone.

point 3 – Telecare assessments must be completed face to face, in the property the client resides. 

Face to face interviews must be at the client’s residence so the assessor can see how the person moves around their home and how they get in and out of bed or the bath etc.  Home visits allow the assessor to assess the client’s capacity and possible difficulties around their home.These assessments and observations could also trigger other referrals.

By face to face, I mean in visual contact, not staring at a person! I also mean not staring into a computer screen where the tick box form is being completed.  Eye contact, observation and listening are essential to any good assessment.

That ticks the box

The take away message is relatively simple, Use tick boxes sparingly and appropriately and with due caution. 

What we need to avoid are crass statements such as:

Have you fallen in the last 6 months?

If the answer is yes then consider a fall detector (which is one of the myriad of possibilities and does not get the assessor to consider other options). 

Have you left the bath tap on? .... ...consider a flood sensor. 

A good assessment would explore (amongst other things):

• If a person has fallen, why and where have they fallen?  
• What other factors contributed to the fall?   
• A lapse in medication perhaps or sudden onset of dizziness etc?  
• Has the person noticed a reduction in their general mobility? 

The reason why someone has fallen could be for a number of contributory reasons.  A full exploration could justify a number of other referrals to services such as GP, Physio, OT or falls clinic.

Telecare needs to be truly person-centred.

point 4 - Tick box telecare could be useful if used as part of a range of tools to assess a person but not as the assessment per se. 

It is clear that in the cost-saving culture, councils and health authorities will be advocating a tick box approach to telecare in the future, but in the long-term this is false economics.  A thorough assessment might trigger additional referrals to other services and might appear to cost more, but the saving is in the client, a person, actually getting the help they need to be able to respond to and manage their condition.

This post was spurred into life by an article in  Telecare Aware.

Update

Since this article was written gdewsbury, the consultancy I work for has produced a person centred telecare assessment tool called DTA: the Dependability Telecare Assessment tool manual. This is available from www.gdewsbury.com/dta only. It takes the user through the process of using the tool to ensure person centred telecare assessments.