Bessie's story - alternative futures and the use of technology

It’s 7.30 am. Bessie normally is always up to make a cup of tea and take it back to bed. But for the last three or four days she has not been feeling that well. She has been sleeping badly. But nobody knows so nobody cares.
She has had more restless nights – getting up to go to the loo several times. But nobody knows so nobody cares.

As she eventually gets out of bed she notices her ankles are more swollen than usual, she feels wobbly and tired. But nobody knows so nobody cares.
Bessie normally has a rough routine to the day. Tea in bed, let the Yorkie out for a sniff and a wee at the same time. Up around 8.30 toast and maybe a boiled egg. But for the last few days she has forgotten to let the dog out with inevitable consequences. And she finds that she is forgetting to buy more milk – not enough for her tea and for the Yorkie’s breakfast. But nobody knows so nobody cares.

She has to sit down on the bed again to stop her head swimming. But she is made of tough stuff. She gets there in the end. But nobody knows so nobody cares.

Today is Wednesday – Bessie normally does her shopping today. Down to the corner shop, chat with Mrs Desai. Pick up her favourite knitting pattern magazine. Maybe a treat – chocolate tea cakes. But she does not feel like it much today. Actually Mrs Desai does notice but thinks she might wait a day and see if Bessie comes in – maybe she is feeling a bit off today. Otherwise nobody notices so nobody else cares.

Bessie does not feel much like lunch. A cup of tea and a biscuit will do. She does not really notice that her hands are trembling more than usual and that the kettle feels more difficult to lift. Maybe just too much water in it today. But nobody knows so nobody cares.

About mid afternoon she gets a routine visit from the District Nurse to check the dressing on her leg – she scratched a bite and ended up with an infection. The DN is cheerful and efficient. She has no idea that Bessie is feeling off or confused. Bessie makes sure she had a cup of tea but does not like to bother the busy nurse with her problems – ‘just old age my dear’. So the DN does not know so she cannot care – which she might if she did.

It’s about 6pm. Bessie normally sits down to Corrie. The remote is not where she thought she left it. As she turns to look for it she suddenly gets a wobbly moment and stumbles, trips over the dog and goes down hard. As she lies there for a moment, winded and shocked she suddenly remembers she had not put on her alarm pendant when she got up in the morning. And then the pain gets very sharp and she passes out. But nobody knows so nobody cares.

The next morning Mrs Desai pops around. She has brought some milk with her as she knows Bessie will need it as she did not pick it up yesterday.  There is no answer but the dog is yapping a lot and seems very excited. Mrs Desai rings the neighbour’s door bell. They shout through the letter box. The neighbour calls an ambulance and the police. They find Bessie still on the floor. She tried to get to her phone but did not make it. Now they know and now they care.

Bessie is in hospital, shocked, in pain from a fractured hip and what is more the doctors are beginning to worry about her blood pressure which seems way off . They are talking about ‘fluid retention’ whatever that means.  The hospital team are so kind and well organised. They are even talking to her about what happens when she is ready for discharge.  But that is going to be a care home for ‘a while’. And no she cannot have her Yorkie with her. Bessie is losing self confidence fast and is feeling well cared for by these nice people but confused. Let them make the decisions for me…

You can write the rest of the script. You may care but because nobody knew nobody cared until too late.

What is the alternative?

Rewind…

The alarm radio wakes Bessie up. That nice Sarah Montague and John Humphries. Tea. She gets out of bed and stands up on the bedside carpet. Radio 4 pauses and a quiet voice from the radio says ‘Good morning’. That’s telling her the weight sensor under the carpet has taken her weight ok. She heads off to get her dressing gown. The radio buzzes loudly and says ‘bracelet please’. She turns and removes the bracelet from the top of the radio where it has been charging (just like her toothbrush does, the nice girl who had shown her how to use it had explained). The radio is linked to a motion sensor clipped to the mattress. It keeps an eye in how well she sleeps at night – she could wear the bracelet in bed but does not like wearing her jewellery in bed – never has done.

The bracelet matches her hair nicely. She had a choice of colours and chose this. She could have had a very nice watch but she already had the one given her by Albert for their 25th and always wears it to remind her of their happy years.

She clips the bracelet on and it vibrates gently on her wrist and a green light glows three times. So it is working and ready to go. It is waterproof so she does not have to take it off in the shower or bath. And if she presses and holds the side of it then it acts as an alarm – although when she tripped over the dog in the garden a few weeks ago the phone had rung and she was able to get to into the house to reassure the  girl on the phone that she was ok. It was nice to know that if she had fallen and been unconscious, the bracelet would have picked up the fall and someone would have been around very quickly if they had not been able to get her on the phone. The battery lasts about a month on the bracelet without needing to be recharged.

She heads downstairs to let the dog out and make her morning cup of tea. The bracelet vibrates 6 times and flashes. A reminder for her to take her pills. She presses the side of it briefly to stop it. She is wearing the bracelet on her right hand as she is right handed.   When she takes her pills the bracelet knows the hand/arm movements linked to opening her pill bottle and will not remind her again until the next set are due.

 Back to bed for the rest of the Today programme, dog on bed with her sharing the cup of tea of course. Then dressed and downstairs for breakfast.

The postman has just delivered the mail and she rescues the brown envelope from the dog before it gets eaten. She looks forward to this – it is her weekly update card. She likes to share it with the nurse and the doctor when she sees them and with her daughter when she visits. It tells her if she is taking enough exercise each week, how her weight is doing, how well she is remembering to take her pills (that one is always 100% apart from the odd evening when Elsie comes around and has a sherry or two). It also tells her about her sleep and because she has a slightly dodgy heart it tells her how that is doing as well  (her bracelet has two silver contacts in the band next to the skin that check her ECG). Because she asked when it was set up for her it also compares how she is doing with other women of her age and background.

Bessie prefers paper – she can stick it on the fridge and show it to her friends. She was asked if she wanted it on her TV or her phone but just liked the thought of the nice coloured card with big writing and clever diagrams coming through her letterbox once a week. She can let her daughter get a copy on her phone if she wants – but is not ready for that yet! She does let the local surgery get an update if anything happens that is out of the ordinary and  she does know that if anything changes then someone will ring her up and to have a chat to see how she is feeling.

A couple of months ago someone had rung from the surgery and asked her to come and see the doctor, or he would come out and see her. It seemed that her weight was going up a bit even though she was ok for exercise and her heart was having one or two ‘moments’ even though she had not noticed it. So the doctor and seen her, done some tests and then adjusted her medication. There had been no problems since then and to be frank she had not realised there was anything wrong.

It even reminded her to go and see the podiatrist when someone had rung up and asked her if she was having difficulty walking properly. And yes she had but had decided to be stoical instead. So she rang and made an appointment.
The girl who had set it up for her explained that the bracelet, weight sensor and motion sensor on the bed all took a while to learn about what was her normal routine was and what the normal rhythm of her body was. She had a few calls early on just asking if she was ok and what she had been doing so they could make sure the system was working properly but it only took a couple of weeks and she had enjoyed talking to Jason who was responsible for ‘setting her up’. Now it all seemed to working well.

 Once a month someone would ring her up to see how she was doing, they would have her information to hand and give her some advice if perhaps she was falling behind on exercise or she had forgotten to take her pills. For example she used to only walk to the shop once a week for her shopping but they had suggested that if the weather was good why not split the shop and go twice a week instead. And she knows her local surgery will always have access to her information whenever she needs to go in.

Her friend Jeannie had one as well. She had Parkinson’s and she swore by it as it could tell before she could if she was about to ‘have a turn’ and she could take her medicine or the doctor would call.

Bessie’s grandson, Jasper, had diabetes. When he had seen her bracelet he had got himself one. He used it to set himself exercise targets for his running and mountain biking. But he had showed her the small scar on his wrist where they had put in a tiny chip the size of a grain of rice that sat underneath his bracelet and constantly monitored his blood glucose and sent it through the bracelet to his smartphone. He shares his information with friends – they put it all on Facebook but Bessie would not be holding with that sort of thing – who else might see it?

There is however one looming issue – the monitoring service has just alerted her GP that Bessie’s patterns of daily living are beginning to become more variable and that this pattern fits the pattern seen in other users who are exhibiting the signs of the onset of dementia. The doctor sighs and reaches for the phone…..

So what could make the difference?

It’s all out there now. It’s rarely the technology however that is the barrier. It is the ability to think radically about the service model and to deliver it. In this case the ability to bring together hardware, software, great design, the extended client access provided by the internet and service models that combine to

• significantly improve health and fitness,
• reduce the need for access to health services,
• create the opportunity for more peer and relative assisted support,
• allow health and care services to more effectively manage and support patients and users and
• to deploy resources more appropriately.
• generate a long term health and wellbeing benefit for the user
• a long term profitable business model for service providers based on the scale and reach provided by internet based services.

The power of the system is in its predictive ability – the ability to predict and avoid deterioration leading to the need for more intensive and costly support, the social marketing methodologies that are used to engage and motivate users to participate in more healthy activities. The challenge is to develop a service that is agile in responding to these ‘signals’ and preventing deterioration rather than being reactive and leaving it to the point of onset and crisis.

The tech hardware

• Sensing Bracelet – growing range in health and fitness market. Example is Fitbit Flex 
• Sensing Watch – an example is Vivago’s product which is well designed, easy to wear and is actually a watch and a sophisticated alarm and monitoring device with a three month battery life and fully waterproof. The forthcoming Apple iWatch is rumoured to be designed to be a platform for many of these sort of services.
• Weight pad – the carpet lies over a weight sensor which uses a wired link to the DAB radio. Bessie could use a set of electronic scales but that requires additional balance and she has to remember to use them.
• Bed motion sensor – the motion sensor is a wired link to the DAB radio. If Bessie wore her bracelet or watch in bed that would work as well. The sensor monitors sleep, restlessness and of course getting up in the night
• Cardiac ECG Monitor – a single channel iPhone mounted unit is already available in the UK from AliveCor (through Amazon). Trials of wrist band based sensors (watch strap mounted) are already taking place using similar technology.
• Both the bracelet and watch send data to receiving units around the house. When out of the house they can either store data for forwarding on return, link through a smartphone (in which case GPS data is also available) or through a dedicated 3G and GPS transmitter device that fits in a handbag or on a key ring.
• Receiving Units – Charging and relay stations – Bessie has chosen to have DAB radios with induction charging pads for her bracelet. The Radios also contain their own motion sensors able to detect motion within the room in which they are placed. The radios relay data from the wearable to a base station. Extending coverage and range in the house simply requires a small device that plugs directly and discretely into an electrical socket. All receiving units can operate on battery power for up to 48 hours.
• Routing Unit. Bessie has a choice of units. They can connect using broadband, a 3G sim, or in Bessie’s case as her devices are provided by her utility company, through her Smart Meter. All units can operate for 72 hours on battery power if required.

The software

Handling the data is the key, the ability to analyse the flow of data and identify significant deviations from routine patterns or identifying gentler trends over time. The aim is to develop effective predictive monitoring which allows early intervention and prevention linked to feedback to the user designed to encourage behaviour changes and links to service providers able to respond to the more urgent events and risks.
As evidence grows we will find that there are relatively few things we have to monitor to give us good early warning for most people – principally activity (exercise and daily rhythms of living), weight, ECG and anything related to management of a specific condition such as diabetes, COPD or asthma for example. The key is reliable longitudinal data monitoring and sophisticated predictive analysis.

• A very good non-health example is O-Sys which monitors Rolls Royce engines 24/7 globally
• Vivago, a Finnish firm, has also developed and tested in use a range of sophisticated algorithms and alerting tools linked to a cloud based service model.
• Ginger.io is a predictive monitoring start-up based around a smartphone
• Within Acute settings recognition of the deteriorating patient using Early Warning Scores is well evidenced.
• Sports medicine and sports telemetry are all well developed users of wearable sensors and sophisticated analytics
• And of course NSA and GCHQ are in this business as well!

The service model

Bessie’s service is provided through a major regional domiciliary care provider. This provides the staff both to visit and to call Bessie when needed. The domiciliary care provider itself has a contract with a European service provider which provides the technology and software platform – all they have to do is purchase or lease the kit, create an account on a web-based system for their clients and set it up according to each client’s preferences. Training is provided on-line and through accredited trainers. But customers for the system include GP surgeries, CCGs, Nursing and Care Home chains. Health insurance companies are also using the system extensively giving discounts on insurance to customers who regularly meet their activity and health-living targets (the equivalent of the black box offered for drivers by motor insurers). The Pharma industry is also using it as part of clinical trials.

This domiciliary care provider has also chosen the option of an automated routing system for its care workers. Every morning their workers get a schedule of clients to visit on their iPad together with system generated reports based on monitoring, latest visit notes and a consumables list. They also have a GPS navigator for the car which has the routing for the day, tracks their progress and if they are delayed will generate messages to the clients next on their list that they are running late.

Individuals can also subscribe direct to the monitoring service and pay for it themselves.  The basic ‘Bronze Service’ includes reporting, advice and feedback via smartphone or tablet, TV, PC or paper plus a falls alarm which alerts nominated relatives or neighbours. The ‘Silver Service’ provides access to monthly live discussions with advisors via phone, FaceTime or Skype as well as enhanced reporting options and the ability for you to let relatives or carers see those parts of your record that you choose to share – this might include the GP surgery (there is an integration option with the most common GP systems). Gold Service provides more frequent advice and support and is designed for those with more advanced and complex Long Term Conditions which require more frequent support and more complex monitoring. All service levels include an alert mechanism (a text or call) that prompts you to seek urgent medical advice should the system detect significant changes in your ‘life’ pattern.

What else…..? Add to the jigsaw.

Big Data, the Quantified Self, the Predicted Self and why the NHS is like a Basilisk

In a series of occasional posts I am going to be looking  at ‘data’ in the NHS and share some thoughts. These are some of the topics I will be covering:

• ‘Big Data’ is the new industry buzzword. Hopefully it will allow us richer insights into what happens when a patient makes contact with the NHS but we need to avoid becoming overly preoccupied with gourging at the trough of and avoid Data Obseity. How much data do we really need to make a difference? Consider the 80/20 rule. And understand that Big Data does not provide the answers, it may however allow us to ask much better questions.

• Investing in Big Data and making it available is of little use unless people are properly equipped to understand it and then have the skills to do something about the questions it highlights. A bit like giving a Kalashnikov to a child – a lot of spray and pray.

• Currently NHS Big Data is about what happens when a person is in contact with the NHS. It helps us understand how we manage patients in the rear-view mirror. Unless combined with other socio-economic and personal data it tells us very little about their pathway before they came to NHS’s attention. It should help us manage patients better but the risk is that we simply focus on shifting the deck chairs when the iceberg is looming. It tells us little about keeping people out of the clutches of the NHS in the first place. A preoccupation with NHS Big Data, however worthy, could simply lock the service into its current mould.

• The most important and promising opportunities for radically re-shaping the relationship of individuals with their own health (as opposed to their relationship with the Health Service) lies in the Quantified Self.  A simple ‘lean’ data stream that continuously monitors a few elements of a person’s lifestyle, using consumer technology design principles and provides feedback that uses emerging research in behavioural modification is likely to have a much greater long term impact than Big Data for a lot less cost.

• The evolution of the Quantified Self is the ‘Predicted Self’. Evidence from some well established services is beginning to tell us that the absolute figures generated by monitoring are less important than the trends and patterns in that data.  We are able to use just a few continuously sampled data items generated by the Quantified-Self data to predict and anticipate potential problems and offer opportunities to avoid deterioration or crisis. There are already some highly successful industry analogues that are arguably dealing with far more complex challenges monitoring and prediction challenges very successfully.

• The NHS central approach to Telemedicine and Telecare has been deeply flawed – akin to the Basilisk’s gaze (read Harry Potter and the Chamber of Secrets). The Whole System Demonstrator projects may have been well intentioned but were misconceived, suffered from industry capture and limited central imagination and have set back the ’cause’ several years. Although that in itself provides powerful learning. There is a very clear distinction to be made between Remote Care which is in the mould of current service modalities and the evolving field of Predictive Monitoring. It is unlikely that the NHS centrally has the culture, capability, capacity, appetite or imagination to make rapid advances in the use off the Quantified Self and Predicted Self fields. Bringing it into the research field risks ‘academic capture’ – an existence in a totally different time/space continuum that does not match the rapidly evolving market and the speed of approach of the health challenges we face. The market, private investment, private providers and private payers and just possibly some very imaginative CCGs are going to drive the first and second generations of services and absorb the risk. The NHS has to be ready to learn from the experience and ride the third wave.

• Pieces of the Quantified Self and Predicted Self jigsaw are already available – the real challenge is the development of a viable service model that does not simply replicate current healthcare models but radically re imagines the nature of the relationship between self, family and services. This is where it gets contentious – because we are talking about taking the Doctor out of the Loop (DooL) and event the Clinician out of the Loop (CooL; and yes- you saw it here first!) at key stages in the process. This is about using pattern matching algorithms and advances in machine learning to spot trends, variations and to learn from the Big Data generated by Lean Data of the quantified self.

• If NSA and GCHQ can do it already then it is going to be happening in the ‘real’ world sooner than you think. Come to think of it, if GCHQ is that short of money that it has to take funding from the NSA then perhaps there is an opportunity here for them.

Why 'transformation' has become an overused word

Transformation is one of those words that is beginning to mean less the more it is used. Increasingly desperate and/or strident calls to ‘transform’ services are shorthand for ‘we are in a fix, have failed to redesign services so far but that is not going to stop us using the word as it makes us sound as though we are on the case’. Watch how everybody nods and agrees when you use the ‘T’ word. So comforting, so aspirational, so ambitious.

Lets just think about it for a moment. Glaciers transformed our landscapes, the Reformation transformed culture and art, the Industrial Revolution transformed economies, air travel transformed the tourist business. None of those was a ‘Great Leap Forward’ – a single bound into a new state freed from the shackles of the old. What they were was relentless evolution, a myriad of steps and changes all heading roughly in the same direction. Multitudes of experiments, successes, failures connected and shared. In some cases that evolution was more rapid than in others – in a connected world with competitive economic and political pressures you would expect more rapid evolution, but still comprised of a series of uneven steps. Another characteristic was that there was no central guiding mind or master plan for any of these transformations. The change was the sum of the efforts of the many, not the few, although a few might initially have influenced the path.

There are quicker transformations, the instantaneous sorts are earthquakes, volcanoes and other major natural disasters. These are the ones where the collateral damage is significant and painful.

So when our leaders call for transformation what mental model is in their minds and what comes to our minds? Our mental model will determine how we respond. Cataclysmic change or rapid evolution?

The illusion of transformation can be achieved by reorganisation but rarely do these impinge successfully on the fundamentals of the service. The alternative is to shout more loudly – transformation by diktat and the stick disguised as a carrot. That rarely goes anywhere constructively except to resistance, riots and a lamppost and handy noose.

 The reality is that what really needs transforming is the way we think about change and how it is best achieved, how we can accelerate the evolution of the service – transforming spread and adoption, transforming engagement, transforming mobilisation, transforming how we equip and support staff and clients/users/patients to increase the rhythm of change to create relentless, rapid evolution.

The challenge facing public services and the NHS in particular, in a feeble economic environment and with the relentless increase in demand from an ageing and increasingly obese population is ‘epochal’. Most NHS organisations have made the ‘easy’ savings – although many have failed to make these savings fully recurrent so are pushing a growing bow wave in front of them. Now they need to get to grips with the challenge of radical redesign – the change equivalent of climbing Mount Everest in the early days of mountaineering.

Those organisations that succeed will have understood what transformation really means, have understood this for a long while and done something about it. Staff at all levels will have the tools, leadership, support, permissions and space to undertake the ‘climb’ and will probably have already have done a lot of the smaller but challenging peaks. But from my experience these are in a minority. The majority are facing a stiffer challenge and ill-equipped to tackle it without the ‘collateral damage’.

Climbing Mount Everest for the first time was not a ‘transformation’, it was a culmination of many years of trying, failing, dying. The transformation was new techniques, training, advances in equipment and knowledge about how the human body and mind responds in extreme environments. Just how well equipped our are staff to achieve the ‘transformation’ we exhort them to achieve? Or are we really asking them to climb Everest in trainers and a t-shirt? How many bodies are we going to leave on the slopes before we learn?

Keeping it simple

The NHS is a complex system, difficult to navigate for the initiated let alone the initiated. At the best of times understanding the roles and relationships within the NHS is difficult but at times of significant change they are even more mysterious. There is a fine dividing line between organised chaos and a complete shambles and the current reforms seem to be teetering precariously on the edge between the two. Add to that the need to find £20bn by 2014 and possibly as much as £50bn in the following 5 years and life gets ‘interesting’ for the leadership of our front-line NHS organisations.
At a time of complexity and turbulence there is even more pressure on leadership to make sense of that complexity, keep a focus on what is absolutely essential and communicate that clearly and consistently with their staff. In essence the senior leadership of a Trust is the buffer between the external chaos and complexity of the wider context and its insatiable demands and the reality of the challenge on the front-line. In the rising storm we need to navigate by a few clear reference points that staff can really engage with.
I would suggest that there are only four hard themes that matter:

• Relentless in the elimination of harm – physical harm, mental harm, harm to dignity
• Relentless in the elimination of waste – waste of money, waste of time of patients and staff, waste of goodwill
• Relentless in the pursuit of innovation – innovation in the way we design and deliver the services of the future, innovation in the way we engage and empower patients and Carers, innovation in the way we think differently about our challenges.

And finally the one we seem to always to pay lip service to only

• Relentless in equipping and supporting staff to deliver the first three with pride.

It this final one that exercises me most. Failing to equip our staff properly is like asking them to climb Everest in trainers. Or as an ex-soldier if feels like sending troops to Afghanistan without the right training and equipment. The damage that is done to the staff and the damage caused to the local context by struggling staff who are ill-equipped and trained is incalculable. Failure to give our staff the right tools, skills and support is inexcusable.
So my simple questions to you are these:

• Are the people who actually have to make these changes happen and who will experience the impact of those changes, equipped with the skills, tools and support that enables them them to rise to the challenge, survive and indeed thrive?
• Do you know what skills and capabilities you have already? Where is your talent and skills register?
• Where are the resources you need to develop and sustain your staff’s capability and capacity to deliver the first three? Have you just made them redundant as part of your savings programme?