Wednesday, 14 September 2016

So far I’ve mostly talked about avoiding the avoidable in hospital expense only at the start, the admission stage, of a hospital stay. But the problem arises at the other end too, when a patient has to stay on because the discharge process is delayed. 

There are two main reasons why this might happen.


OK, so why can’t I just go home?
The more obvious one is that the discharge has not been properly prepared. Tests need to be carried out to confirm that the patient is fit to go home, but the results haven’t been received – or perhaps the tests haven’t even been ordered. Possibly the patient needs to take medications home and the necessary prescription hasn’t been sent through to the hospital pharmacy. Or, even more simply, the discharge needs the approval of a doctor who simply isn’t available, called away to an urgent conference which perhaps, and entirely coincidentally, is taking place next door to a prestigious golf course.

This kind of problem occurs everywhere. Recently I read a 2014 study of two hospitals in Brazil. It found that in one of the hospitals, delayed discharged represented a 23% extra occupancy rate, a figure that climbed to 28% in the other. That means a massive proportion, around a quarter, of the beds in those hospitals were occupied at any one time by people who should already have left.

The other main reason for a delayed discharge is particularly familiar in a nation such as England. Patients can’t leave because there’s nowhere for them to go where they will receive the ongoing care they need. This is particularly acute for older people who may be living alone with no one available to act as carer. They can only be discharged once there is a social worker or community nurse available to help them, or perhaps a bed in a care home.

Delayed discharges generate two problems. First of all, it’s bad for the patients: people generally recover better in their own beds than in hospital and, in any case, simply by staying on patients are exposing themselves to unnecessary risk, if only of infection from other patients around them.

Secondly, the delayed discharge is bad news financially. Acute hospital care is the most expensive care and, even though costs will be lower towards the end of a stay by which time the patient requires less treatment, the mere fact of occupying a bed is expensive. That’s without taking account of the impact on other patients who might have benefited from being admitted to a bed blocked in this way.

A recent study (February 2016) for the NHS in England by a team headed by Lord Carter of Coles, Operational productivity and performance in English NHS acute hospitals: Unwarranted variations, put a figure on the impact of delaying discharges: “the cost of these delays to NHS providers could be around £900m per year.”

That’s close to 2% of the total expenditure on acute care.

How do we fix these problems?

Both require management action, naturally. For instance, my wife worked until two or three years ago in the Discharge Planning team of our local hospital. Here, nurses, social workers and hospital staff worked out of a single suite of offices, preparing the plan to discharge a patient from the moment he or she was admitted. That meant that the agencies involved in post-hospital care had the greatest possible notice that their services would be needed. They could, therefore, assign staff or find suitable accommodation, at least as far resources allowed, in the most favourable possible conditions, rather than in a rush at the end.

Equally, steps can be taken in plenty of time to ensure that all necessary processes are carried out, the appropriate tests or medications ordered, and the paperwork prepared for someone to sign who will be around at the right time.

Computer systems can help, of course. The kind of pathways management software I’ve been talking about in this series can be used by hospital staff as it can by people in primary care. It can issue alerts not just to physicians but to nurses and care assistants: “for this patient to be discharged tomorrow morning, you have to request this test today,” for instance.

When it comes to helping with groups like my wife’s former colleagues, what’s needed is ways to improve collaborative working between different systems. Social work management software needs to interwork with nurse management and general hospital systems. Fortunately, none of that is impossible and over the last few years, great strides have been taken towards making it happen.

What that means is that avoiding the avoidable can now be tackled at both ends of a hospital stay: discharge, with its own specific problems, as well as admission.

Friday, 2 September 2016

Supporting clinical decisions for physicians

Clinical decision support software can be invaluable in a triage service: it will remind staff of conditions that fit the symptoms a caller is describing and prompt them to ask the relevant questions to check on the possibilities, or propose sensible actions.

Isn’t that exactly what we want for doctors too? Shouldn’t they be prompted to consider all possible explanations of a patient’s condition? Might they not also need an occasional reminder?

Things, sadly, are not that simple. As long ago as 1999, the Journal of the American Medical Association carried an article on ‘Why don’t physicians follow clinical practice guidelines?’ They found a number of barriers to the use of guidelines (that’s guidelines in general, irrespective of whether they’re drawing on software support). They may not be aware of their existence. They may be put off by the sheer volume of guidelines out there. They may, quite simply, not have the time to consult them.

Systems should support delivery of patient care, not distract from it
That last objection is one I’ve heard from General Practitioners (family physicians) in Britain. On average, they have ten minutes for each patient consultation, which means the useful time is around seven and a half minutes. Pulling a book out to check on a guideline simply takes too high a proportion of the available time. “I would never consult a guideline,” one GP told me.

Most British GPs use a computerised system these days. Even then, though, they don’t want to have to call up their decision support system and work through it to see whether it has anything to suggest. “I don’t want to have to check my system to be told that a patient coughing blood needs to be checked for possible cancer. If I didn’t know that, I shouldn’t be in this job.”

They also don’t like it if their screen is full of popup alert windows. They need their screens to contain the information that’s useful to them. They don’t want it cluttered.

Despite all that, we all know that diagnoses are sometimes missed. Recently, it was announced that heart attacks are missed in one-third of British women who have had one. Why? Because it’s with men that physicians first think of heart attacks. With women patients, the first thought is much more likely to be cancer. That’s despite the fact that experts point out that women are as likely to suffer a heart attack as men are.

So what’s the answer for a clinical decision support supplier?

First of all, although there does have to be an alert to doctors concerning the presence of decision support information, it needs to be discreet – it mustn’t take up too much space on screen. It just has to be eye-catching enough for the physician, whether a GP or in a hospital, to realise that the system has something to suggest. He or she can then choose to consult it.

Secondly, once the physician has gone into the decision support system, it should not require him or her to select a specific pathway – say lung cancer rather than congestive obstructive pulmonary disease. Instead it should be assembling the symptoms and findings already recorded and, if they are compatible with either condition, propose further questions to ask, or tests to carry out, in order to eliminate one or other of the possibilities.

Thirdly, it has to be constructed to as to save the physician time, not cost more. So as well as supporting the clinical decision, it should also support the process itself. For example, for a GP, does a letter have to be produced for a referral to hospital care? Then the system should produce it. That way the physician doesn’t have to flick between systems and, if anything, the use of it will save time that can be used for the consultation itself, listening to the patient or providing advice.

What does that all mean? That there is indeed a vital role for a clinical decision support system to play in supporting physicians. But it needs to be highly intelligent in design, to ensure that while it benefits patients it does not do so by distracting physicians from their main purpose: helping in every way possible to alleviate suffering and reduce ill health.

That’s one of the most exciting and satisfying challenges that healthcare information work provides today.

Tuesday, 23 August 2016

Supporting clinical decisions for better triage

Most of us understand the need to keep healthcare costs low. On the other hand, when we become patients, we’re not keen to see savings made at the price of increased risk. When it comes to avoiding the avoidable in healthcare, we like to think that costs are unavoidable if they ’re incurred ensuring our safety.

The Netherlands have an out-of-hours service patients can call when their GP practice is shut. The aim is to reduce visits to emergency departments in lieu of family practitioners. Nurses take callers through guidelines, asking a series of questions to establish what care the patient needs and with what urgency.


An out-of-hours call centre at work
A 2007 study set out to find out how well the service was performing. The results were disturbing. In 19% of cases, nurses underestimated the urgency of the patient’s condition. The study’s authors conclude that the service was “possibly not safe,” which feels like an understatement.

Denmark’s out-of-hours service gives evidence of the opposite effect: excessive caution by nurses. The Danish service is principally staffed by GPs, but there’s pressure to use nurses as an economy measure. However, a 2013 investigation found that nurses might be too inclined to refer a case for a GP to see instead of taking a decision themselves. The result? On top of the cost of employing the extra nurses needed, the service, far from reducing calls on GP time, might increase them. Costs could rise instead of falling.

What’s the answer? How can we reduce expenditure by having nurses or, even better, non-medical staff, take responsibility for triage, without either increasing risk to patients or incurring higher costs?

The 2007 Dutch study came up with one answer: it found that the more training nurses had received in the use of the call centre guidelines, the less frequently severity was underestimated. Certainly, telephone triage isn’t simply another application of already acquired skills. It’s a legitimate healthcare service in its own right, needing its own knowledge and expertise.

There is, however, another way in to  improve services. That’s the field in which I’m currently spending much of my time: clinical decision support.

What we’re talking about here is software that helps nurses or non-clinical call handlers work their way through guidelines. At the most trivial level, such software can ensure that nothing’s forgotten. A question might be mandatory, so the handler simply can’t move on until it’s asked. That would ensure essential information isn’t missed. Even with optional questions, their mere appearance on a screen would at least prompt the handler to ask them and might trigger a new line of enquiry.

That, however, is far from enough. There has been research (not enough, yet, but what there has been is telling) into the impact of clinical decision software. A revealing article showed that a call handler might be pushed down the wrong line by the software itself. It cites the example of a handler, a nurse, who had begun to explore what the software offered on the subject of nausea, while the caller had moved on to talk about back pain. With one line of questions already under way, the call handler failed to pick up the second symptom, however important it may have been.

Again, on some occasions, the lack of an appropriate response to certain questions led to a distorting effect: the patient was saying that she felt sick each time she ate, but the software hadn’t allowed for that reply, imposing instead quantitative entries – once a day, three times a day, and so on.

That’s what makes the search for effective software design such an interesting challenge. It’s not enough just to list all possible questions, in a fixed order. It’s vital to take all the information concerning any particular patient into account, without deciding too soon that one item has overriding importance or letting the software itself drive the direction of the investigation. In fact, the system has to:
  1. take into account all the information about the patient, entered in whatever order. In other words, as in a real, face-to-face medical consultation, the patient should be able to describe all his or her symptoms without making a judgement about which is the most important 
  2. suggest questions to the call handler based on all the symptoms, not just one of them 
  3. drop irrelevant questions but propose all the others 
  4. handle unquantified information, such as “I feel sick each time I eat”
That would be the kind of clinical decision support software that can really make a difference, because it emulates what happens in a medical consultation: the patient describes symptoms as they come to mind, not in an orderly or pre-filtered way. Alongside the kind of comprehensive training we’ve already seen is needed, such support software could bring us closer to the goal we seek: a triage service that delivers a reduction in costs without an increase in risk.

In fact, it would be valuable for far more than triage. It can make a major contribution to managing medical pathways in general. But that’s the subject of my next post.

Triage: one way of avoiding the avoidable

Just because something’s avoidable, it isn’t necessarily easy to avoid.

That’s certainly true of avoiding unnecessary hospital admissions. When we’re ill, we want to feel better, as quickly as possible. Indeed, if we’re in pain or great discomfort, we want our care to start immediately – to us at least, our condition is urgent. If we can’t see a professional in one of the relatively inexpensive settings, such as a GP practice – perhaps because we can’t get an appointment soon enough, or because our condition arose out of hours – we might be inclined to head straight for a hospital. Why, we might even call an ambulance to get us there.


When we need one, we really need one
When we don’t, we really don’t
A while later, we would be standing in our local Emergency Department and explaining how ill we are. It’s possible that the person we’re talking to is a relatively junior member of medical staff or nurse, inclined to be risk-averse: that is, they would prefer to err on the side of caution, offering more treatment than we really need rather than too little.

The next thing we know is that we’ve been admitted as an emergency inpatient to the hospital. Now, if that’s what we really needed, then that’s fine. If it wasn’t, then the system has failed us. From its own point of view, it will have behaved wastefully – as I argued last time, it may have spent twenty times as much on our case than it ought to have done.

But unlike a good meal or a good holiday, where spending more generally gives greater quality, in healthcare that’s not necessarily the case. In hospital, we’re surrounded by sick people. There’s a serious chance we might pick up a disease from some of them, and actually find ourselves becoming less well rather than better from our hospitalisation. It was clearly avoidable, and avoiding it would have been desirable for both sides.

The process that would have avoided it is called triage. From the French word for sorting, triage was first extensively used in the First World War, to identify three classes of injured soldiers: those who it would be a waste to treat as they were beyond rescue, those who could wait because they weren’t that seriously hurt, and the intermediate group on whom to focus.

Today, it’s come to mean a process by which the medical condition of a patient is assessed before a decision is taken on treatment. Triage can take place in a number of ways. For instance, a GP in effect carries out triage in deciding whether a patient needs hospital care or not. But we tend to think of triage more as the kind of service a patient might phone for advice before taking off for the hospital, or that an ambulance call handler provides when we dial an emergency number.

A conversation takes place between the caller – who may or may not be the patient – and someone able to advise on treatment options.

That sounds simple enough and provides an obvious way to avoid an unnecessary hospital visit. Unfortunately, it’s not as straightforward as it sounds. Triage is a skilled task, and there are two traps, at opposite ends of the scale, that have to be avoided.

  • Excessive caution: to ensure a patient doesn’t miss out on treatment that might be necessary, the call handler decides on a referral to an urgent service when one isn’t necessary. A paramedic I once dealt with told me that the triage service locally had simply become “another way of calling an ambulance.” Far from reducing highly expensive but unnecessary care, the triage service might well increase it.
  • Under treatment: the call handler fails to spot a condition that does need urgent care, and the patient suffers as a result. In January this year, the Guardian published the horror story of a doctor who needed urgent treatment but might have been left blind by a triager failing to spot the real problem.

The impact of good triage was shown by a study carried out by the journal Acute Medicine in 2015. It showed that when triage was carried out by senior hospital physicians, 28.5% of admissions were avoided – a huge success rate. But do we really want triage carried out by senior physicians who should be treating patients?

The elusive solution would be a way of increasing the quality of decisions by call handlers who are experts in triage as such, rather than medical specialists. That’s a matter of training, though of course it can also helped by providing better support.

Another study, in BMC Medical Informatics and Decision Making in 2014, suggests that providing a clinical decision support system can help. Since that’s my own field, it’ll be the subject of the next post in this series.

The central challenge for healthcare: avoiding the avoidable

One of the key questions facing health services today can be summed up in three words: avoiding the avoidable.

This is an international problem. I’ve been working around the healthcare sector, mostly in England but also in France, Germany, Switzerland and Spain since the mid-1980s. Much of the time, I was working for American companies through which I also gained some knowledge of the US system.

The graph below shows how expenditure on healthcare has grown, decade by decade, in those countries over that period (based on figures compiled by the OECD). The rate of growth is not the same in all of them, and the starting and end points are different, but they all show the same inexorable climb. Nor, despite all the moves to reduce expenditure – the NHS in England is on a five-year plan to save £20bn – there’s no sign of the upward pressure ending any time soon.

Notice that back in the 1980s, the US was spending a little under 10% of its income on healthcare. Today, it’s one dollar in every six.


The inexorable upward pressure on healthcare expenditure
(source OECD)
The reasons for that pressure are not hard to find. It is becoming possible to treat a constantly increasing range of diseases, which is wonderful for the patient seeking relief. Financially, however, it is far more problematic, as all those treatments have to be paid for, and many are expensive.

At the same time, life expectancy continues to grow in the advanced economies, so far higher numbers are reaching the period in life when there’s a much-increased chance of acquiring long-term diseases such as arthritis, heart disease, diabetes and so on. Many of these conditions are also influenced by lifestyle: this is the case of obesity and heart disease, for instance.

More to the point, many of our ageing population find themselves suffering from more than one long-term condition (LTCs as they’re commonly called, in a field that just loves three-letter abbreviations or LTAs). Take obesity: as well as being a dangerous LTC itself, it can also lead to coronary heart disease (CHD, of course) and type 2 diabetes. The patient may have arthritis too and perhaps the beginnings of dementia. Suddenly, as well as being a human enjoying a longer life than used to be possible in previous centuries, he or she is also a mass of conditions each of which needs treating.

Thereby hangs another tale. Western medicine has grown up in specialties. But how do you handle a patient with a heart, endocrine and rheumatic condition simultaneously? We need new models of care, based on multi-disciplinary cooperation.

When talking about new models of care, however, one that has to be right at the top of the list is a model that focuses on keeping patients out of hospital where possible. Hospital care is the most expensive form. Where in the past it was perhaps not a major issue for a patient to show up at a hospital because they were worried and no GP was available, today with the system creaking under the strain, that’s really no longer viable.

Here’s how it works. In England, to visit a General Practitioner incurs a cost of roughly £80. If that patient went to an Emergency Department instead, the cost would be nearer £150. Now imagine the situation where in that Emergency Department, the patient, an old man running a high temperature and coughing uninterruptedly, is being seen by a relatively junior doctor on call late at night. Will he have the courage to issue some medications and tell the patient to go home and see his GP in the morning? Or will he admit him, just in case?

If he does admit him and the patient ends up staying over two nights, we’re talking about a cost in the region of £1500.

That’s what I mean about avoiding the avoidable. If the patient doesn’t really need the hospital care, you’re talking about saving 80-90% of the cost of the treatment if you can avoid the admission.

In the next in this series, I’m going to talk about some of the ways in which that can be achieved.

Thursday, 9 February 2012

Clustering around in Mental Health

A great conference last week on the introduction of new payment arrangements for NHS Mental Healthcare! And it was all the more interesting because, far from being exclusively limited to Mental Health, much of what it had to say was relevant to significant areas of Acute care too.

For anyone who has not been following these developments closely, from 1 April it becomes mandatory in Mental Health to start using so-called ‘Clusters’ to classify cases, and include them within the process of contracting for care. There is general recognition that we are still a long way from being able to base budgets exclusively on Clusters, let alone set a national tariff for them: there is simply too much variation among cases within Clusters, or more precisely too much unexplained variation between them, to allow them to be used reliably in this way.

On the other hand, it is a breakthrough that large numbers of Mental Health Trusts are at least applying the Clusters to their records. One of the conference speakers mentioned that his Trust was achieving nearly 98% coverage, though he was candid enough to admit that he had his own doubts about the figure: in relation to just what should he be measuring the percentage? There is a grey area of definition between what should be included in Clustering and what should be excluded, so getting a precise percentage is difficult.

Even so, it’s clear that a high proportion of cases are now being Clustered, and that’s a major advance. It means that we can at last begin to see just how well Clustering is working, to assess the level of variability and, ideally, to work out what is acceptable variation and what is not. In particular, we need to find out where variation is simply down to the way Clustering is being applied. 

Because Clustering isn’t like HRG or American DRG grouping, and not just because there are only 20 or so Clusters as opposed to nearly 1200 HRGs. The biggest difference is that HRGs can be derived by an automated system based on data already recorded against patient records — diagnoses, procedures, lengths of stay, etc. — whereas Clusters are based on a professional’s assessment of the case.

This makes the extent of variation in treatment within a single Cluster unsurprisingly high. For example, another speaker reported on the results of a survey of over fifty Mental Health Trusts. Within Cluster 11 alone, the cost per day of treatment varies from Trust to Trust from a few pounds up to nearly £550:


Cost per day variation across Trusts — within a single Cluster
From the graph, it look as though between about Trust 11 and Trust 35, daily costs seem to be in the £20-£30 range, suggesting a reasonable level of consistency. Outside that range, however, variability is so high as to undermine the system: at the ends of the distribution, it is of the order of 100:1 or more.

There are at least three possible explanations of this variation:
  1. Wrong Clusters: the clinician’s assessment is incorrect. In this context, a speaker at the conference mentioned the ‘Richmond-Lambeth’ syndrome: mental health problems tend to be far more pronounced in the under-privileged London borough of Lambeth than in relatively well-heeled Richmond; will that lead psychiatrists in Richmond to include in the more severe Clusters service users who may be more seriously ill than many others of their case mix, but far less than those included in similar Clusters in Lambeth? Even without such general trends, it is of course possible that individual cases can slip into an inappropriate Cluster.

  2. Poorly-defined Clusters: some of the Clusters may be too broadly defined and therefore cover cases that are not entirely homogeneous, but include service users whose condition differs too much in severity for their treatment to be comparable.

  3. There are genuine variations in clinical practice within a Cluster of reasonably homogeneous service users.
In the longer run, it is only the third type that is of interest: we want to identify, analyse and take action over variations in practice that can’t be justified by any specific characteristic of the service user.

On the other hand, in the short term it is certainly the first two that are going to attract most of our attention. Until that kind of problem can be ruled out as a possible cause of the differences we see between cases and between providers, we can’t really use the data for analysing the third type of variation. And, above all, we certainly can’t use the Clusters as a reliable guide to cost.

So the first stage of the exercise is going to be looking into what exactly lies behind each of the Clusters and what is causing the observed differences. As we do that, we shall start to build a picture of what we would normally expect to see in the way of a mix of treatment types within a Cluster: between so many and so many outpatient appointments or community visits, between so many and so many admissions or days of inpatient care.

In other words, we shall start to build definitions of the packages of care that are associated with Clusters. When we have those, we shall be able to identify treatment profiles that differ significantly from the norm.

Now there’s nothing exclusive to Mental Health in this approach to defining bundles or packages of care. We can build them for Mental Health care clusters, but why not for somatic diseases too? Why not for congestive heart failure, diabetes or even different types of cancer? Indeed, for any long term condition?

Because this kind of work is breaking down another of the deeply-established barriers in healthcare, between somatic and psychiatric care. Anything that requires treatment over a long period, in different care settings, perhaps by different providers, lends itself to this kind of package of care approach. It’s by no means limited to Mental Health only.

Nor is it limited to British healthcare only: much of the thinking behind the launching of Accountable Care Organisations in the United States is also concerned with having a single body responsible for care in a variety of settings by a range of different institutions. There is nothing surprising about this convergence: it is a piece of increasingly accepted wisdom that anything up to 40% of what we previously thought of as acute care is evolving into chronic condition management (with Cancer as perhaps the most striking example). Inevitably, that is driving us all, everywhere, to undertake this kind of work.

So again it was interesting to discover that many of the people attending the Mental Health conference also had responsibility for helping to manage Long Term Conditions. The need to think in terms of packages of care spans traditionally distinct fields.

Interesting times ahead. And, not for the first time, I was struck by how Mental Health is showing the way.

There are some interesting challenges ahead. Not least is what lay behind what several speakers pointed out: they didn’t like talking about Payment by Results. They felt that the initials ‘PbR’ should be viewed as standing for ‘Payment by Recovery.’


A refreshing view, and one that fits well with the package of care approach. After all, how do you know a package is complete except when the patient has recovered? 


But can you imagine the impact on healthcare if remuneration started to be based on outcome?

Thursday, 19 January 2012

Patient confidentiality: opening a gateway


As the potential to provide better and better healthcare keeps growing, with new techniques and drugs constantly arriving on the market, so does the pressure to control healthcare costs. 

Understandably. No-one has ever worked out the maximum a society can spend on healthcare. With the United States nudging towards 20% of GDP, it is reasonable to wonder at what point will its expenditure be so high that it can no longer spend sensible amounts on other key areas, whether it’s education or even roads - or, and this is particularly sensitive in the US, defence.

But there's nothing simple about controlling healthcare expenditure. Not if we are also going to keep taking advantage of the latest advances and maintaining the best quality of care possible.

From the point of view of the information professional, both imperatives offer opportunities: any drive in either area depends on having access to reliable information. 

Take an obvious way of cutting out waste and improving care: eliminating unnecessary treatment. 

Why is a patient who has been put on a course of drugs by a GP on Tuesday turning up at Accident and Emergency in the local hospital on Thursday? Is he just expressing his lack of confidence in the GP? Or was the drug regime taking so long to improve his condition that he felt the need for hospital care?

Either way, what has happened has been a waste of resource.

What makes the information angle interesting, however, is the question of how the GP finds out in the first place. Somehow we need to alert her that the patient she saw one day turned up two days later at the hospital. That means marrying the record in the Primary Care system with another in the Hospital’s A&E system.

Which means sharing information by which the patient can be identified.
Healthcare information professionals have wanted to do just that for many years. Unfortunately, such information sharing conflicts with the justifiable anxiety of patients over different bodies swapping identifiable information about them. And the process of linking the information may even involve a non-NHS organisation, such as the company I happen to work for.
The concern is understandable because there have been such scandalous breaches of confidentiality of patient information. Lost USB keys, disks going astray, stolen laptops with unencrypted data. As a simple citizen and potential patient, I’m not happy that data about me may be floating around in this uncontrolled way.

So a series of legislative initiatives have made it increasingly difficult to share healthcare information. The Data Protection Act, the European Convention on Human Rights, the Statistics and Registration Services Act, even the confidentiality provisions of Common Law, mean a veritable thicket of legal restrictions makes it practically impossible in Britain to construct a service which would tell the GP about the possibly unnecessary double treatment of her patient.

All this is symptomatic of what happens when there’s an over-reaction to a scandal (or several scandals). And it has led to a conflict between principles: on the one hand, the entirely commendable protection of patient confidentiality, on the other, the legitimate use of data to inform necessary actions in healthcare.

Now it is when such conflicts arise that political and moral debates become the most interesting. To take another topical example, which has precedence, freedom of speech or the right to privacy? The trick is to get the balance right: protection of necessary privacy without excluding legitimate public information.

So I was fascinated to attend a recent meeting hosted by the NHS Information Centre and attended by representatives of the Office of National Statistics (ONS), who hold information about deaths which many of us have wanted to tie up with healthcare data for years. 

It was at this meeting that I heard for the first time of a ‘Gateway’ through the confidentiality regulations.

How do we you access to that gateway? You have to complete applications, naturally - where would we be without bureaucracy? By the way, that’s not a reflection on the NHS, rather on the whole of humanity. 

The application has to make it absolutely clear that you are going to use the patient identifiable data you want to handle for a specific purpose; that you will take only as much as you need for that purpose; and you will keep only for as long as strictly necessary for that purpose.

If your purpose is deemed to be legitimate, then your application will be approved and the gateway will open to you. 

Now this strikes me as immensely sensible. What can one object to? As a citizen, I don’t want my personal information abused. I don’t want it held any longer than it needs to be. And I don’t want it collected for one objective and used for another.

As an information professional, I want to be able to get hold of patient identifiable data, but only to provide a specific service. How can I object to an outside body ruling on whether my purpose is reasonable? In any case, if I’m setting out to provide information to help maintain quality and control costs, that’s a double objective that we all want to achieve - as I said at the beginning -  so my application is likely to be approved.
And if I’ve been given access to the data for the purpose stated, by what right can I expct to use it for any other? Or to retain it any longer than necessary?
Strikes me that we’ve found just what I said we needed when principles conflict: a point of balance.
A word of warning though: getting agreement on that balance point isn’t always easy. At the meeting I attended, the ONS representatives weren’t at all happy about releasing their mortality data. It seems that though the dead can’t be libelled - you can say what you like about them, they have no right to protect their reputation - they do have a right to confidentiality beyond the grave. And the ONS wasn’t convinced that the NHS was doing enough to protect identifiable data. They weren’t that keen on the gateway.
But I think we’ll get there. And my GP will get the information she needs. And maybe we’ll be able to do what's necessary to hold healthcare expenditure at a level which won't impact on our capacity to repair our roads and educate our kids. 

While still providing adequate levels of care.