Month: March 2014

Patterns and pride: diary of a medical anecdote

…There is, it seems to us,
At best, only a limited value
In the knowledge derived from experience.
The knowledge imposes a pattern, and falsifies,
For the pattern is new in every moment
And every moment is a new and shocking
Valuation of all we have been.

T.S. Eliot, East Coker (Four Quartets)

Day 1
It was a good day today. There are not many occasions when you recognise the clues, feel bold enough to make a diagnosis, and see admiration in the eyes of your colleagues – some of whom didn’t even know who you were.
The patient came in with fever, he was referred as just another pneumonia or a urinary infection, but I noticed that one of his blood results was unusually high. The eosinophils. This led me to ask about his travel history, because these cells often go up when there are parasites in the system. And indeed he had travelled, a fact that no one else had thought to ask. I looked up the country in which he had spent time, and worked out what sort of parasites could be involved. But I knew which one already. The symptoms seemed to fit what he was describing, to the letter. Fever, abdominal pain, some weight loss, and especially breathing difficulties that he had developed just before coming to hospital. It all fit.

strongyloides
So I looked up the treatment, called the pharmacist to make sure we had it in stock, and prescribed it. By the end of the day he was already feeling better. It made all the study seem worthwhile. But it was a special memory that served me so well today. I had seen a patient just like this one during my elective, in Africa. I even wrote about it in the report that we had to hand in, so it stuck in my brain. Strongyloides. I suppose, over a whole career, many such images and stories will find a place in my memory, to be retrieved at a later date. Nothing wasted, they all find a niche. A good day.

Day 2

I went straight into see him as soon as I arrived. He was grateful, and asked how long it would take him to get better. I said I would refer him to the tropical disease specialist, as they see more of this sort of thing. And of course I explained that we needed to confirm the diagnosis, even though I was pretty sure about it. I reviewed his blood tests, and saw this kidneys weren’t working so well. He must have got very dehydrated before he came in. His breathing had settled slightly, but he was still struggling. I didn’t want to come across as an expert, because I have only ever seen one other person with this. But he’s on the right track.

Day 3
I was disappointed today. His kidneys were worse, despite the fluids that I prescribed. My consultant didn’t have any new ideas, she was pretty happy to go along with my explanation. But she was keen to see confirmation of the diagnosis. The antibody tests will take days, they have to be done in London. She asked me whether it could be any other parasite, or any other type of infection full stop. Perhaps she doesn’t quite trust my impression. It made me think, and reflect. But I’ve seen the list of parasites, and none of the others that he might have acquired in Africa present like this. So I suggested that we push on with the current treatment. It worked last time, I explained.

Day 4
Weird. He was confused today. This parasite can affect the brain though. I spent 45 minutes on the phone trying to get through to a tropical disease expert, to see what they thought. They agreed, yes, Strongyloides can go into the brain. So I arranged a scan, and it’s happening after hours tonight. The anti-parasitic agent we’re giving him will kick in soon.

Day 5
I went to see him but he wasn’t there. I ran into another SHO in the corridor who had been on call overnight and he told me he’d been transferred to the intensive care unit. I almost ran. When I got there I found him unconscious, on a ventilator. He was surrounded by other doctors. There was a neurologist, examining his eyes. I asked what was going on. He had blown a pupil, I was told. It didn’t make sense. I saw a nurse returning from one of the computers. She was shaking your head. ‘What!’ shouted one of the other consultants, a rheumatologist. ‘They must have done it!’ he said. I faded into the background, but I continued to listen. What angered him was the fact that during the patient’s entire admission, no one had sent off a vasculitis screen. As soon as I heard that word, vasculitis, my heart dropped and the muscles in my legs grew week. I had to sit down behind the nurses’ station. I realised that I had made a huge mistake. For vasculitis is another main reason for eosinophils to be raised. I knew immediately what is the diagnosis was. Churg-Strauss syndrome. I had missed it completely.

Day 9
I met with my clinical supervisor today. I had asked for the meeting. I told her what happened. I could tell that she thought my mistake was a bit stupid. She asked me what my thought processes were on the day the patient came in. I explained the whole story, how it rung bells in my mind, how the words that he used, and the clinical examination findings, had taken me back to a vivid moment in my training. And I had questioned the data, and I had tested the hypothesis, and it all seemed to fit.

‘But what about the differential diagnosis?’ she asked

‘I… I…’

‘Did you develop one?’

‘I did, I think. I’m n…’

‘Did you write it down Emma, in the clerking? Did you test for anything else?’

‘I didn’t think I needed to. It was so clear.’

‘Well, to be fair, the patient saw a lot of other people, and more senior than you, before he got really ill. No one really challenged the diagnosis. There’s a lesson for all of us. But it shows you the power of a positive diagnosis. Especially one that appears to be supported with confidence. You’re a junior doctor, but you see how much weight people give the opinion of anybody who seems sure of themselves. Yes, diagnoses should be challenged by more senior doctors as they review patients, but it is not uncommon for them to defer to the opinion of the first doctor who really got their teeth into the case. And that was you. You made a plan, it made sense, the patient even got a little bit better at first. Sometimes, I think, there is really one chance to set things into motion in the right direction, and that’s on the first day of admission. It’s a big responsibility. Am I making you feel any better?’ She smiled. Then she asked, ‘What would you do differently next time?’

‘I won’t be so confident.’

‘That would be a shame, if you are right.’

‘Well if I really think I’m right, I will make my case confidently. But I will make sure there are caveats, and that other avenues aren’t closed off right at the beginning. Perhaps in this case, because he had raised eosinophils, he should’ve seen a rheumatologist anyway, even if I really thought he had an infection.’

‘I’ll tell you what I take away from this. The power of anecdote. In your mind there was a clear story, and narrative that you had seen played out before, one with a happy ending. You were sucked back into that memory. If you’re like me, your memory works best when it’s embedded in stories. But I guess that might be a disadvantage, if you can’t stand back and approached each case with pure objectivity. Attack each case with fresh eyes, but use the stories that you recollect to remind you of all the possibilities.’

‘I hear you.’

‘And one more thing. The Procrustean Bed.”

procrustes‘The what?’

‘His confusion. It challenged your hypothesis, it didn’t make sense, but you rationalised it, and made it fit your idea – a parasite in the brain. Procrustes chopped or stretched travellers who encountered him until they fit the size of his bed. You not only fell into the trap of anecdotal memory, but you tailored your interpretation of the data so as to support it…’

‘There is one more thing.’

‘Tell me.’

‘I was pleased with myself, on the first day. I elated, to make a difficult diagnosis.’

‘That may be the most valuable lesson of all. It’s seductive, the warmth that being right gives you. But don’t worry, you’ll experience enough reverses in your career to learn that pride is never to be entertained. I think you’ve learnt enough from this particular case, don’t you! How is he by the way?’

‘Getting there.’

– – –

Note: This case report from the CLEVELAND CLINIC JOURNAL OF MEDICINE explores the clinical scenario in more detail.

spokenunspokenPAPER

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The turning away

dorian grey

Detail from cover of ‘The Picture of Dorian Gray’ by Oscar Wilde

When I tell him that his liver is so badly diseased it may not recover, he turns away and looks into the middle distance. There are no questions. He was expecting this. He has probably known that it would end like this for several years, perhaps a decade. But even this foreknowledge could not change his behaviour. He continued to drink, and now, at the age of 4_, he is approaching the end of his life.

 

I want to ask him why he couldn’t stop. Naïve I know – but doesn’t the prospect of death outweigh the immediacy of compulsion? After all, he was well supported at home; he had every opportunity to arrest the damage in its tracks and live to a decent age. I would like to know why…what was going on in there? But we are well past that now. Serious complications have set in, and all I can do is treat each one as it develops. He clearly doesn’t want to talk about it, and I am not comfortable pushing him.

 

When all the patient really needs is treatment there seems to be little place for such enquiries. The answers will add nothing; the questions will do no more than suggest to the patient that he did this…he had a choice. In contrast to patients who hold our gaze with a combination of anxiety and confusion, and ask ‘Why me?’, the alcoholic has all the information he needs. Whatever the truth, wherever the blame lies, those factors are irrelevant now. That’s why he looks away. There is nothing to say, nothing to explore.

 

Understanding why patients made certain choices does not allow us to reach into the past and shake them to their senses, or reveal to them a picture of their future selves – debilitated, jaundiced, desperate. A fortunate percentage will survive their first emergency, and with abstinence will see their liver improve. Some may even be judged appropriate to receive a new liver. But what of those who continue to deteriorate, and who in turning away seem determined to keep their personal truth to themselves? Does this aversion to allowing us beneath the surface impair the quality of care that is given?

 

It might. Doctors are not brilliant at digging into patients’ private lives or hidden histories. If, through an embarrassment of regret, a patient seems unwilling to discuss the behaviour that resulted in this crisis, the path of least resistance may lead doctors to a superficial degree of emotional engagement. Deeper knowledge of the patient is not acquired, the picture remains sketchy, and empathy does not develop. This may translate to a failure of advocacy. Doctors, who spend their days trying to determine if and when to escalate or intensify care, need to know that the patient wants to recover. They are driven, in large part, by the patient’s expressed wishes. If the patient appears determined to survive, and says as much – ‘I don’t want to die doctor, please do your best to get me through this, I want to deal with this…’ – the medical team is more likely to advocate for intensive care or prolonged support. Patients who remain silent and closed may appear uninterested in their own survival.

 

I worry that those who turn away deprive themselves of the opportunity to be known or understood, and are subsequently less likely to receive the best that medicine has to offer. The challenge, for those of us who receive them on the ward, is to prise away the (un)emotional armour and find out what they are really thinking. It’s not comfortable, it may feel intrusive, but it is probably necessary.

oOo

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Candour crunch: being honest about risks in healthcare

The report Building a culture of candour – A review of the threshold for the duty of candour and of the incentives for care organisations to be candid’ makes very interesting reading. It seeks to define levels of harm that should trigger an approach to patients and relatives, and explores how organisations can be encouraged or compelled to develop a culture that facilitates this. It also touches on the realities of the ‘post-paternalistic’ era and the demonstration of candour in day to day practise.

Two excerpts:

‘Modern medicine offers an abundance of hope, but very few absolute certainties. One of the comforts (some would say benefits) of paternalism was to obscure this lack of certainty for patients. This is no longer sustainable, and it means that being candid when things go wrong needs to be grounded in being honest about what could go wrong from the start. Better conversations about risk and the potential for harm are essential for fostering a culture of candour…’

‘Clinical care is inherently risky, and while organisations and individual clinicians must do all they can to minimise those risks, it will never be possible to eliminate them fully.’

These appear to encourage a greater degree of upfront honesty about the risks of healthcare, rather than waiting for mistakes or unavoidable adverse events to happen before ‘owning up’. We could, fancifully, call this ‘pre-candour’.

I find the balance between upfront honesty and the provision of ‘too much information’ a hard one. Not all patients need or want the same depth of information about risk, even if, objectively, they face similar chances of accidental injury or death.

Opportunities to be open about risks begin in the Emergency Department or Admission Unit. Here I sometimes find myself explaining that coming into hospital is never routine, and that being on a ward brings with it physical and psychological risks. Sometimes this is part of the explanation as to why a patient should not be admitted. An example would be a young patient with a headache that does not sound suggestive of meningitis or haemorrhage; coming into hospital will not achieve anything, but they may have been led to expect admission to a ward, and may require convincing that it is right not to come in. The same might be true of a more elderly patient with a mild chest infection; they are weak and tired, they might benefit from three days in hospital, but if it is not entirely necessary, medically. A case may need to be made about why the risks outweigh the advantages. One begins to speak of ‘infections’ or ‘picking up bugs’. Is it appropriate to be negative about hospitals, and their inherent risks?

The ‘hospitals are dangerous’ mantra is unhelpful, but it is dishonest to portray hospitalisation in a neutral way. Henry Marsh, a (clearly disillusioned) neurosurgeon, wrote in the Independent newspaper recently that hospitals are

‘… like prisons and there’s a huge lack of insight into what a ghastly environment they are.’

This is depressing, but he has a point. An alert patient admitted to a general ward for more than a few days is likely to witness distress, disability, physical dependency, acute confusion, wandering, incontinence, the ravages of addiction and sadly, death at close quarters. Even with the most attentive and compassionate nursing, these aspects of frailty and illness cannot be hidden from the watchful.  Patients of all ages have mentioned to me how eye-opening and challenging the experience of being an in-patient was. It does not seem unreasonable to explain some of these things in advance.

As to the physical dangers of hospitalisation, the degree of detail we should go into varies. Hospital acquired infections overall are less frequent nowadays (the incidence of MRSA and C Diff has fallen dramatically in recent years), but hospital acquired pneumonia does remain a common development in the frail population. Should we explain this, or quote the incidence? Do elderly patients and their families, who are coping with the news that they are ill and need to be admitted, need to be told that ‘…by the way, there’s a chance you could catch something else as well…’?

A discussion about upfront candour is essentially a discussion about informed consent. In the context of planned procedures, this is clear and simple; we know which risks require explanation, the patient is enabled to understand these risks in relation to the benefits, and they agree or decline. But when we are discussing admission in the context of acute illness, the use of powerful antibiotics or drips that might facilitate the entrance of organisms into the blood stream, consent seems less relevant. The patient has no real choice about whether to come in or not. They are ill. To compound the stress of the situation by enumerating the additional risks may well be ‘too much information’.

The post-paternalistic culture in which we work emphasises that patients are our equals, partners in care, and nothing should be hidden. However, we must surely remain sensitive to the fact that patients are also vulnerable, and may, in certain circumstances, be happy to ‘have things done to them’ without full and frank discussion. All doctors will recognise the scenario of the patient who has halted them mid-explanation with the phrase, ‘Doc, just do what you need to do, OK.’

The key, it seems to me, is in modulating the degree of openness according to the patient’s condition, its severity, its acuity, and the signals given off by the patient regarding their need for information. This modulation depends on the doctor’s ability to understand the context and judge the person in front of them. Perhaps this requirement on the part of the doctor is itself paternalistic, as we are once again putting the doctor’s interpretation centre stage.

Paternalism is always tempting. It makes life simple. As the authors of the report write, ‘One of the comforts [ ] of paternalism was to obscure this lack of certainty…’ If things go to plan, and nothing goes wrong, the patient who was not been subjected to a conversation about risk will leave the hospital oblivious to the dangers that they faced, and their experience will in retrospect seem serene. If we are to encourage more ‘pre-candour’, we must be prepared to help our patients understand and accommodate the anxiety that may be engendered. This will require time to talk, time to listen, and time to answer. This is the price of candour, and of true partnership in healthcare.

oOo

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Two rooms

TwoRoomsLaunch

Scene from the play Two Rooms

Doctors speak several dialects, and the contrast between that used with patients and that used with colleagues can be stark. I sometimes wonder how patients would react if they heard every conversation that concerned them?

Such a notion seems absurd, practically, though they surely have a right to such access. We have already been through a process of openness with letters, which used to be sent to GPs but not patients. There was a vogue to ask patients if they wanted to receive them, and now patients get them automatically (in my experience anyway). This has caused a change in the way letters are written, such that doctors tend to avoid opaque medical terms and provide more accessible explanations. Personally, I still write in a ‘doctor- to doctor’ way, as the GP is the primary recipient, but I know that if I use lots of acronyms or eponyms the patient will a) be excluded from the thought processes behind their management and b) likely to hold up a highlighted copy when I next see them in clinic.

But back to the conversations. If there is a suspicion of cancer, for instance, it is common to discuss a patient’s condition and scan results in a multidisciplinary team (MDT) meeting. MDTs are designed to bring the opinions of several specialists to the table, for example: surgeons, oncologists, specialist physicians, nurses and dieticians. Some of these meetings go on for hours. Cases may require prolonged discussion, and can become heated if opinions are not in alignment. But other cases are easy, because it is clear that nothing to be done. The liver may be overwhelmed with infiltrates of cancer. Conclusion: no treatment options – palliative care only. Somebody might say, ‘Hopeless’. They are not being heartless; they have never met the patient. But it’s just true. Next patient. It may have taken no more than a minute to reach that conclusion. It is medicine at its coldest and at its most efficient. Time will be spent on the ones for whom there is a therapeutic option, a chance of cure or prolongation.

As soon as practically possible the patient is seen and the results are communicated to them. We move to the second room. As much time as necessary is taken to break the news, and, if done well, the scene will demonstrate medicine at its most compassionate. What a contrast.

If the patient had witnessed the MDT discussion they may well have been sickened by the speed with which their case was dismissed. What about all the other details? Their wishes, their social situation, their feelings… but no, those aspects were not relevant. It was, to be brutal, a technical decision. Too advanced for surgery; too frail for chemotherapy.

Each discussion has a distinct purpose, and each requires a different set of medical skills. To perform well in each environment a doctor has to adapt. Engage emotionally when required, but remain objective, scientifically accurate and evidenced based at other times. To bewail the lack of a more holistic discussion in the MDT would not be appropriate – it would not meaningfully contribute to the decision, and it would hold up the flow. The doctor or nurse in that meeting who actually knows the patient might find it too cold, and might experience a degree of dissonance as everything they have learnt about this unfortunate person is shorn from the presentation. But, come the face to face meeting, all those details come back into play, and are, of course, essential.

What does this contrast tell us? It suggests to me that there will always be a place for compartmentalisation. The modern, post-paternalistic culture, perhaps best summarised in the phrase ‘no decision about me without me’, seems to reach a limit in circumstances where highly focussed and specialised discussion must take place in a clear, unemotional atmosphere. MDT meetings are a necessary but, at times, somewhat surprising throwback to the sacerdotal, impenetrable practice of medicine in centuries past.

spokenunspokenPAPER

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A little piece of you – care.data dialogue

This is my fanciful contribution to the care.data debate. For a more rational account please see Jonathon Tomlinson’s recent blog post ‘Care dot data’, and Ben Goldacre’s accounts in the Guardian. This article (A simple guide to Care.data by Olivia Solon) in Wired magazine is very readable too; it discusses Green, Amber and Red data, how much agencies will pay to get it, and the feasibility of re-identification.

My reading of the situation is that people are concerned about two aspects –

1) the possibility of their personal medical details (‘secrets’, a term used by Ben Goldacre) being accessed by strangers; an issue of confidentiality

2) the possibility that agencies who are not part NHS affiliated or research institutions with adequate governance structures will use it to increase profits; an issue of transparency

oOo

Two retirees, Geoff and Pat. They meet again to discuss care.data. Geoff has major reservations, while Pat continues to bang the drum. Pat has been doing a bit of work to bolster his argument, as Geoff will discover.

G             “Any more thoughts on this care.data controversy?”

P             “I still maintain, it sounds like a great idea.”

G             “I’m opting out. No-one has got the right to see my medical details.”

P             “But no-one wants to see your details. It’s not personal.”

G             “It is if the anonymisation code is broken. Or if someone cross-triangulates the information.”

P             “But why would anyone want to do that? Why would they be so interested in your details?”

G             “Who knows. It’s the principle, that it can be done.”

P             “However unlikely that breach of confidentiality?”

G             “Yes, I worry that someone, at some point, might want to find out about my health.”

P             “And you think that would be the best way to do it? Crack the care.data database. I’m sceptical.”

G             “It’s the lack of guarantee. There is no large, publically administered database that is immune to criminal interference.”

P             “Well you can’t substantiate that I’m sure, but many would agree with you. There is a trust issue that I’ll come to. I’m just wondering though, whether to take a risk to make a point. You’ll be very annoyed with me.”

G             “Try me.”

P             “You’ll forgive me?”

G             “Let’s hear it.”

The open secrets

P             “OK. I wouldn’t insure your life. I know that you have had rheumatoid arthritis since you were 35, that you need a new shoulder joint but are unlikely to get one, that your medication has recently been strengthened, that you require frequent monitoring of your immune system, and that two years you had a cancer scare that required you to stay in hospital for one week.”

G             “Who told you?”

P             “No-one told me anything.”

G             “Then how?”

P             “I was in the GP’s last week. The blood samples were in a plastic basket near the front desk waiting to be picked up. Yours were at the top, and I read the form.”

G             “Why on earth?”

P             “Well I wasn’t going to shut my eyes was I. I looked in that direction, it was in front of me. And it said, ‘RA 30 years, now on Aza.’ I know you are 65.”

G             “And the rest?”

P             “I looked up Aza…it means Azathioprine. Powerful stuff, obviously only recently prescribed as it said ‘now on’. And theyr’e still monitoring you closely on it.”

G             “Yes…and?”

P             “Two weeks ago I went to the hospital, to the out-patients clinic. You were there on the same day, and I was behind you in the queue to check in. The receptionist asked you who you were due to see, and you said Mr Chandler. I know he is an orthopaedic surgeon, and a shoulder specialist. Later I saw you leave – I was sitting in the coffee shop – and you were very down in the mouth. Hence my inference.”

G             “Right little Sherlock aren’t you. And the cancer scare?”

P             “Well, after your appointment you were sent for an MRI scan. I followed you to the radiology department.”

G             “Why?”

P             “To hand in my own x-request actually, but also to prove my point. We had already spoken about care.data. So I stood in line again, and the receptionist there turned her monitor round to point out what availability there was. On the left of the screen, for anyone with half an interest to read it, was your history in that department. You’ve had countless joint x-rays, obviously, but one stood out, a PET scan. They are only really ordered if there is a concern about cancer. And the date on it coincided with the week you failed to turn up at the local history club a couple of years ago. Cancer scare.”

G             “Christ on a bike.”

P             “Sorry.”

G             “You invaded my privacy.”

P             “Privacy! You’ve been in hospital, you know what that word means – nothing! There is no privacy. If I had been in your ward I would have overheard every conversation that you had with your doctors, I would have heard their subdued, concerned tones as they broached the subject of possible cancer. I would have heard them explain the scan result, I would know everything. If you were ill and weak, I would have been aware of your every bowel movement. In the hard end of healthcare, there is no privacy – just a pretence of privacy. You can be quite sure that much of your ‘data’, many of your medical details, were there to be seen when you stayed in hospital, but there was nobody to take note of it, because they had no interest in you as an individual. It’s the same with care.data. It’ll be there, protected quite well probably, but there will be nobody in a darkened room, the blinds pulled down, who wants to scrutinise your contribution to it.”

Justified paranoia, or just squeamishness

G             “Your argument seems based on the assumption that naysayers like myself are either paranoid or have an over-inflated perception of their own importance.”

P             “Paranoia, yes. Perhaps it’s partly to do with the Snowden revelations, PRISM and all that. And there is an overlap. I discovered those things about you with barely an effort. Your data is out there already. Confidentiality is not about what people know, but what they do with the information. It’s like the tree falling in the forest when no-one is there – does it still make a sound? Same with data. Your data could be seen, discussed, interpreted, all day every day for a decade, but it would only affect you, only enter your perception, if it led to a decision that touched you. It’s just like the NSA or GCHQ. I don’t care if they read all my tedious facebook updates unless they come round and make something of it.”

G             “That’s naive. What if you were convening a new, subversive political party…would you feel quite so nonchalant then? Your medical details might become quite valuable. It would be very useful to know you needed insulin three times a day, should you start to cause trouble! It is naive to think that just because you and I are conventional, nefarious agencies will have no interest in picking out individuals’ details and using them.”

P             “But how many of us will ever be so significant as to attract that kind of attention? It’s too fanciful!  And I think the data to be uploaded is a little more cryptic than you might imagine. As I showed with my brief exercise in detection, anything that anyone wanted to find out about you they could discover much more easily by spending a couple of days in the neighbourhood. I have a more challenging proposition to put to you.”

G             “Go on.”

The philosophy of ownership

P             “…You don’t own the data anyway.”

G             “I do. It’s my body.”

P             “No. It’s measurements that have been taken by a doctor, or conditions that have been diagnosed by them. The data wouldn’t exist without them.”

P             “It’s still derived from me.”

G             “By the doctor. And how did the doctor come to be there?”

P             “She’s employed by the NHS.”

G             “Yes, provided through the taxes that you pay.”

P             “I don’t see where you’re going with this.”

G             “The point I’m making is that your is the property of those who find it and compile it, in this case, the state, through the state health service.”

P             “I am the property of the state?”

G             “Your data, yes. Just as the state owns your driving history, your legal history, they know which houses you’ve lived in, what grades you got at school – it’s all data particular to you. What’s different about your medical data?”

P             “It’s more personal. It’s from my body, it’s about what’s in my body.”

G             “Are you sure it’s not squeamishness, or the potential for embarassment? Is it the possibility that someone can read about the episode of psychosis when you were 24, or the erectile dysfunction drug you were prescribed last year- I’m not talking about you, obviously – but in theory?”

P             “Perhaps it is. Medical details are different. They come into existence not because the state employs a doctor or a nurse, but because we choose to go and see those personnel, and trust them with our private concerns.”

G             “So it’s a matter of trust. That’s the essence of it isn’t it?”

P             “Yes. On several levels. The one-to-one trust that allows me to speak to my doctor…”

G             “You know, don’t you, that hospital data is already uploaded. Each episode of care. The week you spent in hospital…that’s in there somewhere. Anonymised. Diagnosis, outcome, your age, your comorbidities. You knew that?”

P             “I did. But this is different. It’s longditudinal, it’s my entire history in primary care. Much more personal. How can you argue that anyone but me can own it? It’s my history.”

G             “I suppose it goes back to Rousseau’s Social Contract. It is the general will that we, the sovereign people, give our government the right and the privilege of choosing how to administer power in our best interests. For our part, we have agreed to make sacrifices, in order to allow the general will to be advanced, such as resisting the temptation to take what we want – that is to behave anarchically, to give up part of our income – taxes, and, I would contend, to give up some of ourselves, in the form of information. Care.data is part of that sacrifice. We may experience a mite of discomfort, we may not enjoy the idea that a part of us resides in a database, but the general will, in this case to live longer, and to benefit from advances in understanding that might occur, outweighs that. The hitherto unrecognised patterns of disease, to be identified, or unanticipated associations between geography or employment or lifestyle and disease, may benefit future generations.”

Those actuaries

P             “Yes, yes, I have accepted the advantages..but my misgivings remain, regarding transparency…motives. It is not the ‘general will’ that insurance companies refine their actuarial tables and maximize their profits…”

G             “Why not?”

P             “Why not! Why would I want them t make more money…from my data? And end up charging me more because I had a cancer scare!”

G             “But you are happy to be charged less for your car insurance than a 17 year old, based on the fact that you are a better prospect than the reckless youth. Is that different?”

P             “Yes.”

G             “And you are happy to pay less for life insurance than a smoker?”

P             “Yes, but…”

G             “It is no different, in essence. They make that calculation because of data. Available data, about who lives and who dies. Cold, crude data that is comprised of numberless individual tragedies. But we need to know it.”

P             “You seem to be an apologist for the state. You seem to have developed great faith in the wisdom of the state, although I seem to recall you opposed the Health and Social Care Act with equal sincerity.  Not so wise all the time it seems. ”

G             “I am vulnerable to the charge of naivety. But yes, I believe that care.data is a good decision, and that after this pause, when the furore has died down, we will reap huge benefits in the years that follow. It’s just a shame they screwed it up so badly, for want of a sensible hand on the tiller, and an understanding of, and respect for, how people feel. Such a shame.”

spokenunspokenPAPER

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