Careful With That Data, Doctor!

Have you had one of these leaflets come through your door?

You should have; in fact you probably have had one but may just not have noticed[1]. A recent poll for the BBC suggests that only 29% of adults recall receiving it. In early January one came through my letterbox. It was inserted carefully inside a leaflet for the Co-op supermarket, together with an invitation from Talk Talk to sign up to their broadband package, and with some other assorted pieces of paper that were of even less interest.  If you are anything like me that sort of collection of junk mail normally gets no more than a cursory glance before being consigned to the recycling bin. So much for the fact that NHS England's statement that its deal with the Royal Mail specified that the leaflets would not be wrapped up in other mail! If the NHS were going to go to the expense of using the Royal Mail, they might at least have put their leaflet in an envelope addressed to their patients; we might have noticed it then.  It was only the letters NHS in the top right hand corner of the leaflet that made me give the thing a second look.

The proposals contained in the leaflet are that the NHS will share data that they hold on you and me with "those who plan health and social care services, as well as with approved researchers and organisations outside the NHS, if this will benefit patient care." Now on the face of it that is not too controversial. The idea behind the scheme is that the data will be shared in order to find more effective ways of preventing and treating illnesses, that the NHS will be able to manage their resources better and that people at risk of a condition can be identified and offered treatment. All very laudable and at first sight nothing to be too alarmed about. After all it makes perfect sense for the NHS to use data it collects to manage patient care and provide a better service...except. Except that not only is the intention that this data be used within the NHS, but that it will be shared with  "approved researchers and organisations" outside the NHS, although quite who these organisations are is anyone's guess. That is a little disquietening because although the NHS says that data will be anonymous they also say that postcodes, National Insurance numbers and dates of birth will be used, although that will be redacted before data is released to outside organisations. The question that should concern us is who are these other organisations and what would they do with the data?

It is difficult to have a great deal of confidence in exactly how confidential the NHS will keep our data when you consider how many data breaches the NHS has been responsible for. The Daily Mail recently reported more than two million breaches since the start of 2011, an extraordinary figure that fortunately looks to have been grossly overstated as figures published by health website pulsetoday.co.uk suggest that breaches during this period number less than ten thousand, although that is quite enough thank you. Breaches include paper records being left in shops and car parks or thrown in litter bins in public places, of confidential patient data being sent to the wrong addresses and of computers being sold without confidential data being removed.

The media has been full of stories on the Care.data subject.

For instance, NHS Surrey failed to completely wipe and destroy 1,570 hard drives containing highly sensitive data on over 3,000 patient records before disposing of the computers containing those hard drives. This came to light when a member of the public, who bought a computer online (it is believed it was sold on eBay), found those records on the hard drive. The NHS trust were fined £200,000 in July 2013 for that offense, which given the parlous state of NHS finances, is a criminal waste of money for failing to comply with basic data protection principles. Brighton and Sussex University Hospitals NHS Trust were fined £325,000 in 2012 for similar breaches.

Apart from the alarm that the data sharing proposals have raised with the general public, GPs have also raised concerns and some have already opted their patients out of the scheme. Oh yes, the NHS mention in passing that you have the option to opt out of the scheme, but to do so you need to inform your GP (cue a large spike in appointments for GPs as patients ask that they be exempted). In practice you do not need to see your GP, you just need to speak to your GP practice, i.e. the receptionist (that helpful, cheerful breed whose raison d'être appears to be to protect doctors from ever coming into contact with patients).There is no form to fill in, nothing to sign...which begs the question, how confident will you be that your wishes have been complied with and how can you ever prove that you made the request if it turns out that your data is used against your wishes? Why could the NHS website not provide an option for patients to opt out online? If nothing else, why could there not be a paper form that would become part of your record at your doctor's surgery?

The NHS and other government departments do not have a great track record with IT projects; not to put too fine a point on it they are rubbish at them. Government departments have thrown good money after bad trying to develop ill advised systems that have been scrapped or not been fit for purpose. In some ways this current project, known as Care.data, is as likely to founder as any other, like the NHS patient record project which was dropped last year but only after £10bn had been spent on it. Other debacles include the project that was meant to save the Department for Transport about £57m but which actually  cost £81m, the Ministry of Defence project that even in 2010 was £180m over budget and eighteen months behind schedule, not to mention the £5bn spent on the ludicrous National Identity Card Scheme that was scrapped for a multitude of reasons. And they are just the tip of a very big iceberg.

My reservations about the Care.data scheme are many fold. Firstly the cost and the time involved that could probably be better spent by the NHS on actually treating patients. I also fear that the perceived benefits will be far less than has been stated.

Secondly, given their track record, I have absolutely no confidence that the NHS will protect patient data. It is a near certainty that there will be data breaches; patient data will not be anonymised properly. Data containing full patient details will be lost or simply sold to organisations who will use it for commercial purposes. Imagine the potential for insurance companies to use this sort of data to either target potential customers for health insurance, or conversely reject applications from certain people.

Thirdly, there is the fact that this is an opt out rather than opt in scheme. The very fact that a BBC poll showed that only 29% of adults could recall receiving the leaflet means that potentially a great number of people who might have opted out of the scheme would have been blissfully unaware of it. With a project of this magnitude and sensitivity the NHS should have been asking patients to opt in and even once the NHS get their act together and re-launch the scheme it is probable that a great number of people will remain unaware of it and be opted in by default, whether they like it or not.

The whole thing smacks of the NHS were trying to foist this upon us without our noticing and that they are now somewhat embarrassed to have been found out; the fact that the project is now in temporary abeyance suggests that they realise that they have got this badly wrong. I was going to pop round to my GP's surgery and opt out, but on balance I'm not sure if there is any point; either they will still use my data anyway, regardless of my wishes,  or just as likely the whole thing will be consigned to the same bin as the Identity Card scheme.

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[1] If you have no recollection of receiving this leaflet and want to read it in full, you can find it here: http://www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Documents/NHS_Door_drop_26-11-13.pdf

The Joy of Exams

My younger daughter, Sarah, is currently in the midst of her GCSE's and I must admit I don't envy her. When I was taking my O levels (and there is a phrase that I've used frequently in conversations with Sarah, much to her aggravation), there did not seem to be the same sort of pressure as there is on teenagers today. These days I believe that expectations are much higher than they were when I was sixteen; back then our teachers wanted us to pass our exams and they wanted us to realise our potential but now it seems that simply passing GCSE's is not enough; these days it seems that everyone is expected to gain A* grades in everything. The publicity that is generated about the number of students achieving A* grades fuels both the belief that the qualification is getting easier and the pressure that students are under to obtain that grade.

The proportion of GCSE entries awarded an A or A* increased every year between 1988 and 2011. Illustration: Paul Scruton for the Guardian

There has been a lot of debate about whether GCSE's (and A levels) are easier than they used to be. From what I have seen of Sarah's school work it is difficult to say if it is easier or not, but it is definitely different. Successive governments have altered the format of GCSE courses and whereas when I took my O levels it was a case of one, two or maybe even three exams per subject at the end of two years of study, these days students are taking formal exams, submitting coursework and undertaking controlled assessments. Changes are afoot to put more emphasis on the end of year exams and while that would be my personal preference, obviously there will be a lot of students who are more comfortable with the current regime of coursework and controlled assessments in addition to some formal exams. Everyone has a different learning style after all, so everyone will have their preferences as to the form their exams take.

When I was taking my O levels (there's that phrase again!) and indeed when I took A levels, the format was simply formal exams and that suited me. For me there was an adrenaline rush about going into an exam hall, sitting down and turning over the paper and being (usually) happy that the questions matched the areas of the syllabus I had specifically revised. For that the teachers at my secondary school have to take a lot of credit; by and large they were pretty successful in predicting what sort of questions we would be facing and therefore directing our revision into those areas.

Most of us tend to look at the past through rose tinted spectacles and skip over the bad bits so you may think that I am recalling the days when I took formal exams purely with the benefit of forty years of selective hindsight, however it was only a few years ago that I put pen to paper in a formal exam when I studied for a Diploma in Business Analysis and Operations.

In 2004 my then employers, HSBC Bank, offered a Diploma in Business Analysis and Operations (DipBAO) course in conjunction with the Institute of Financial Services (ifs) and having received an email inviting me to take the course, I applied. I was encouraged to do so partly because I thought it would be interesting, partly because I wondered if after such a long time I could actually undertake any formal study or not, and in part because other members of my team seemed keen to take the course too. You will notice that I did not consider possible advancement in my career as a potential benefit of taking the course, I was (and still am) too cynical to have believed that to be likely!  As it turned out, having applied and been accepted, I found that none of my colleagues had actually applied; I was on my own!

The Diploma course was made up of four modules; Managing People in Organisations, Managing Information, Business Analysis, and Project Management. The first two modules consisted of distance learning which required two written assignments to be submitted plus a formal three hour written exam. The latter two modules required attendance on bank run courses after which written assignments were required.

In the summer of 2004 I received the course material for the first element, Managing People. It was daunting now to realise that I had to start studying for the first time in three decades, and studying via distance learning too, something I had never previously tried. Even more daunting was the realisation of how big a commitment I had made as I tried to fit studying around a full time job and my home life. Frequently this meant starting my studies at ten o'clock in the evening and working through until about two in the morning. Having obtained passing grades in the assignments, the really hard work started as I began revising for the exam. There are lots of different ways to revise, most are a matter of personal preference. For me it largely consisted of re-writing my notes in a particular format as my memory is quite visual; if I can call to mind the format of the page it helps me recall the content. One thing I found out while revising was that sleeping on it was important. I would sit revising into the small hours and find that little was sinking in. I would go to bed and wake up to find that, like an overnight database job, my mind had ordered my thoughts and I could remember a lot more than I had been able to before I went to bed.

One thing that took a bit of practice was writing for three solid hours. Most of us now probably write very little with pen and paper and here I was embarking on a marathon session with a biro. Anyone thinking of taking a written exam in the near future would do well to spend a good deal of time just practicing writing for long periods; there is no point in going into an exam with all the answers in your head and not be able to get them down on paper because you go down with writer's cramp after thirty minutes.

 Interestingly, as I was at that time not a line manager and had no experience of actually managing people, I was able to treat this subject as a purely academic exercise; I had no preconceptions to get in the way of learning the subject and producing the sort of work that met the examiner's expectations. Whereas I gained a Distinction in the Managing People in Organisations element, I just scraped a pass in Business Analysis, ironic as I was (in part) employed as a Business Analyst, which sort of proves my point about approaching formal study without preconceptions.

As you will have gathered (it's in my profile on this blog after all), I managed to pass the whole shooting match and am now entitled to the letters DipBAO after my name; well I would be had my membership of the ifs not lapsed and I'm blowed if I'm prepared to pay over a hundred quid a year solely for that privilege (and a regular magazine).  In March 2007 I received my Diploma in an awards ceremony at Southwark Cathedral, which is up there with the proudest days of my life. It wasn't exactly a cheap day; hiring gown and mortar board and having an official photograph taken cost a tidy sum, but it added to the sense of occasion.

Southwark Cathedral

With some of my fellow students at our graduation.

Taking the Diploma was one of the hardest things I've had to do (in terms of fitting it into the rest of my life, if for no other reason), but also one of the most rewarding and it certainly makes me sympathetic to the testing times that Sarah is going through at the moment. To all of you who are in the throes of taking some form of formal qualification I say the very best of luck and to all of you who aren't but have a family member who is... good luck too!

Sunday In The Park

Every Sunday morning thousands of men up and down the country drag themselves out of their beds and head for the park or recreation ground to play Sunday League football. Some of these men are young and fit; many have left their youth behind many years ago and many have only a passing acquaintance with fitness. Some of these men can play a bit; many...well, you get the idea.

With the previous night's Match Of The Day still fresh in their minds, these men dream of emulating Luis Suarez in the penalty area, bossing the midfield like Yaya Toure, of making heroic tackles like John Terry, or pulling off dramatic penalty saves like Joe Hart. The reality is somewhat different.

Dream...

...reality.

The thing about Sunday league football is that it is, in theory at least, exactly the same game as that played in the Premier League: in exactly the same way as literature is exactly the same whether it is a classic novel by Charles Dickens or a self published work by a semi-literate madman from a sink estate.

Premier League matches are played on immaculately manicured pitches tended by an army of groundstaff; Sunday football is played on patches of scruffy grass better suited for growing vegetables. With all of the wet weather we have been experiencing in recent weeks, most parks and recs have been out of action, but I recall the frustration many years ago when I played Sunday football, of having games postponed on Friday evening because of a little overnight rain only for Sunday to dawn dry and bright with the pitches in perfect condition but deemed unplayable due to rain 48 hours earlier. Contrarily one would sometimes arrive on a Sunday morning to find that overnight rain had turned the pitch into a paddy field, that ducks were swimming in a puddle in one goalmouth but despite which the game was on.

Premier League...

 

...Sunday League

Premier League footballers change in luxuriously appointed rooms with state of the art facilities; Sunday league footballers are grateful to have anywhere to change. Again, when I played Sunday football the facilities were variable. At places like Hainault Forest they were quite good; at our home venue at Wanstead Flats they could best be described as adequate; at some venues they were little better than barns. In fact at one ground we called home, Sutton's Manor near Stapleford Tawney, the dressing rooms were a barn.

Premier League...

...Sunday League.

Sutton's Manor is now a private psychiatric hospital, but back in the 1980's it was a rambling manor house with lots of open space, some of which was marked out as football pitches. As our football club had been unable to find a pitch with our local council (well I assume we did not get one, I am still waiting for Havering Council to tell me if my application was successful), we were grateful to find a pitch at Sutton's. Unlike a pitch with the local council, teams had to mark out their own pitches and supply their own goalposts, so one Saturday morning, armed with pegs, twine and a line marking machine, we marked out a pitch. One of our team, one Jerry Moffat, a carpenter by trade, arrived with some lengths of wood and a couple of hours later we had a pitch complete with bespoke goalposts.

The pitches at Sutton's each had distinguishing features. One had overhanging trees so that a long, high ball down one flank might have its progress retarded by low hanging branches. Another had goalposts that bore only a passing acquaintance to normal dimensions. I well recall playing in goal on that pitch; despite my lack of inches I can jump and put my hand over a regulation crossbar, but try as I might with this one I could only just reach the underside of the bar, it must have been a good six inches too high! One Sunday we arrived to find that a tractor had been driven across our pitch leaving two long, shallow trenches. Common sense prevailed and a non-aggression pact was introduced when the ball went in a trench so that one player could extract it before play recommenced.

It seems that council run pitches are deteriorating these days, though. Used by thousands of amateur teams each week, these pitches are in an "abhorrent state" say the Football Association. Pitches are not only currently waterlogged after heavy rain but are also suffering from overuse and a lack of maintenance, in part caused by local government cutbacks. According to Sport England about  1.8 million people play football each week and about 80% do so on council owned pitches that were once heavily subsidised, however budget cuts mean that the cost of hiring a pitch has gone up by as much as 300%.

 

Sunday in the park; typical Sunday League action.

That 1.8 million figure is well down on the 2.14 million that Sport England reported were playing the game as recently as 2007. This decline in playing numbers has no single cause; busier lifestyles, weekend working and other distractions are just some of the factors. The increased cost of running a team (in 2001 a survey by the Grassroots Football Show estimated that the annual cost was around £2,000 and that is likely to be considerably more now), the loss of referees (many of whom have given up the game because of poor player discipline) and a shortfall in facilities are other key reasons. Just as budget constraints mean that local councils have had to cut down on pitch maintenance, many are also selling off playing fields. In my local area for instance, Oldchurch Park, which once boasted numerous football and cricket pitches is now the site of Queens Hospital, while the plot where its predecessor, Oldchurch Hospital, stood is now a housing estate.

Hackney Marshes, perhaps the most iconic Sunday League venue of them all.

Despite the costs, running a Sunday team these days must be easier than it was when I did, if only for the fact that everyone has a mobile phone! One of the biggest obstacles I faced in running a Sunday team  was making sure everyone knew where and when we were playing and actually getting them there. On one occasion we all met up alright but our convoy of cars became separated en route to the ground. Critically the one vehicle that never made it contained our goalkeeper and our main goalscorer; it will probably come as little surprise then that we lost (10-1).

In fact the stress and strain of getting the game on in the first place seriously distracted from my enjoyment of playing on a Sunday. I'll admit to having been no more than an ordinary player; if I had one strength though it was my versatility (I was able to perform equally well - or poorly, in a variety of positions); I played in goal, at left and right back, in midfield and as a forward. On one memorable occasion I managed to notch two goals by half-time but when we were awarded a penalty in the second half my dreams of a hat-trick were shattered when I sent the goalkeeper the wrong way from the spot only to put the ball wide of the post. On another occasion, playing in goal against a team from three divisions above us, I was having a storming game despite the driving rain and had kept the score to 3-0 at the break. One of my team-mates confided in an opponent who had said how well I was playing that I didn't normally play in goal. This appeared to galvanise the opposition who scored a further seven in the second 45 minutes.

After a number of years of struggle in the Barking & District Sunday League Division Three (the bottom division of five), Parkstone FC, for that was us, actually managed to attract some better players, including one Jon Bates who had played Isthmian League football with Barking. He scored 24 goals in 16 games for us that season. It was to prove our final season however as a number of players announced that they would leave in the summer. Faced with trying to recruit new players together with the cost and the time involved I decided to jack it in. Our last hurrah was a double header, played after the season had officially ended and only then because our opponents were in the running for promotion. It was played on a Sunday afternoon and we were forced to field a number of "ringers" one of who had already played on Saturday afternoon and Sunday morning! We lost the first game by a single goal and the second 5-3, a game in which I made one goal and scored two. Being Sunday football of course, neither of my goals were particularly orthodox. One was direct from a corner that went through at waist height and eluded everyone before creeping in at the far post, and the second was a penalty. My spot-kick was pushed out by the 'keeper; the ball landed about half way between us. Both me and the 'keeper, and the ball ended up in the net.

It may be understandable that the number of people playing Sunday football is falling, but the game is such a part of the fabric of English life I truly hope that the decline can be arrested or reversed.

Smoking In Cars

Last week a Labour amendment to the Children and Families Bill aimed at reducing the exposure of children to second-hand smoke was put to the House of Lords. The intention of the amendment is to make smoking in cars when children are present a criminal offence and The House of Lords have decreed that Members of Parliament will have a free vote on the matter when the amendments to the bill are debated in the near future. 

The Lords have offered MPs a free vote.

Predictably the discussion about smoking in cars when children are present has polarised opinions; although the majority agree that it is not to be recommended, there are opposing views on whether it should be the subject of legislation or left to the individual's common sense. The health lobby are in favour of a ban; opposition comes in the form of those whose view is that government should not be able to dictate what people do in private spaces. For instance, Deputy Prime Minister Nick Clegg said it (smoking) was "a stupid thing to do when a child is in the back of a car" but that he did not want to "sub-contract" parenthood. While smoking is already banned in vehicles used for work under a law introduced in England in 2007 following similar legislation in Scotland, Wales and Northern Ireland, Simon Clark, director of pro-smoking group Forest, has said of a potential ban on smoking in private cars that " Legislation is completely unnecessary. Most adult smokers accept that smoking in a car with children present is inconsiderate and the overwhelming majority choose not to. Education, not legislation, is the way forward." Forest also make the point that such a ban would be difficult to enforce.

Some US states have a ban on smoking in cars when children are being carried, although I understand that drivers cannot normally be stopped for this reason alone and are only ticketed after being stopped for some other driving violation. The introduction of such a law in this country may come with similar restrictions and yes, it may be difficult to enforce but just because something is difficult is no reason not to attempt it. I do not see why a ban on smoking in cars should be any more unenforceable than the ban on the use of handheld mobile phones, or the requirement to wear seatbelts, and there have been prosecutions for both of these offenses.

Now I recognise all of the arguments about civil liberties, about the intrusion of the state into people's lives and the government's case that this is a matter best dealt with through education rather than legislation, however I would entirely agree with the principle that smoking should be banned in cars, but not necessarily for the purpose of protecting children (although I agree with that too). My view is that smoking should be banned in cars whether children are present or not, indeed that it should be banned regardless of whether there are passengers of any age or if the driver is alone.

You may consider that to be a draconian point of view, but consider this. Drivers are banned from using mobile phones;  drivers have been stopped for eating or drinking while driving (I am referring to non-alcoholic drinks, alcohol is a completely separate matter), and while in some of these instances the offence has been rather petty, the grounds for doing so are sound. Eating, drinking and smoking while driving are not illegal in the UK but drivers can be charged with careless driving if police believe they are not in control of their vehicle as a result.

Consider the mechanics of driving and smoking. The driver has first to locate their packet of cigarettes and extract one. Then they have to find their lighter. Having done so they light their cigarette. All of these are distractions causing the driver to take their eyes off the road. If, as studies by the University of Leeds have shown, a driver's reaction times may be up to 44% slower if they are eating, I would argue that a similar reduction in their reaction time could be caused by them smoking. Similarly, research by RoSPA (Royal Society for Prevention of Accidents) found that drivers’ reaction times were 50% slower when using a hand-held mobile phone than under normal driving conditions; the similar degradation in reaction time when eating (and smoking is likely to have a similar effect), make a good case for a ban on smoking.

Apart from the fact that lighting up is a distraction, the act of smoking  can be itself be hazardous. Anecdotally, and this is a true story, I have heard of a driver who attempted to flick their cigarette end out of the car window only to find that it deposited itself on the back seat where it ignited some papers. Equally dangerous is the possibility of a driver dropping their cigarette in their lap or in the foot well (and I have been in cars when the driver has done both), resulting in undignified scrambling with no attention paid to the road as the driver attempts to prevent his crotch catching fire.

To return to the matter that prompted the debate, the risks to the health of second hand smoke being inhaled by children if someone is smoking in the car. Research by the British Lung Foundation has shown that a single cigarette smoked in a moving car with a window half open "exposes a child in the centre of a backseat to around two-thirds as much second-hand smoke as in an average smoke-filled pub of days gone by." Now I am somewhat mistrustful of such statistics or factoids and I am by no means a proponent of the philosophy that people's freedom of choice or their civil liberties be abrogated  on the basis "if it saves just one life," but I think that the case for banning smoking in cars is unassailable.

There will be some who see this proposal as another step on the road to outlawing smoking altogether. "What next?" people will ask, "A ban on smoking at home?" Well, one exists already of sorts, because many local authorities will not place children, certainly not children of pre-school age,  with prospective adopters or foster carers who smoke. It would be unrealistic to suggest that a smoking ban be extended to private properties (although you could argue that it should banned if the home is used as a workplace, and many more people work from home these days), and the pro-smoking lobby would be apoplectic, but it is possible to believe that that day could come eventually.

That's my colours nailed to the mast and I await with interest the result of the vote in the Commons. Even though a vote in favour of a ban would not go as far as I would like, it would be a step in the right direction.