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?

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.