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.

Counting the deaths that count

According to the American columnist H L Mencken, ‘there is always a well-known solution to every human problem – neat, plausible, and wrong.’

For example, in assessing efficiency of healthcare, nothing is simpler or more plausible than to measure length of stay. So we’ve had countless studies comparing hospitals on the basis of ‘average’ (i.e. mean) length of stay. A particular hospital may have a mean value of, say, 4.8 against 4.5 for a peer group. That difference becomes the basis for the conclusion that if there are 80,000 inpatient stays, the hospital could save 24,000 days and close some eye-watering number of beds. All this is advanced without a thought as to whether a mean value is even appropriate for a measure like length of stay, which is usually distributed with a very long tail (small numbers of patients with massively long stays, usually due to the complexity of their condition), or whether a difference of 0.3 is even significant.

In case anyone thinks this is a wild exaggeration, we’ve seen a hospital rebuilding programme that took this kind of analysis as the basis for calculating its required number of beds, and paid the price when it discovered that the new building had far too few. 

In addition, we need to ask whether this kind length of stay analysis even compares like with like. We’ve seen comparisons with peer groups which confidently predict efficiency savings, only to find on closer examination that the hospital treats a sub-group of complex patients that the peer group doesn't. Careless analysis can lead to bad and costly conclusions.

If length of stay taken in isoloation is the simple, plausible and wrong measure of efficiency, the equivalent in the field of care quality is mortality. Now, there’s no denying that the patient’s death is not a desirable outcome. Keeping mortality down is an obvious step in keeping quality up. There are however two problems with the measure.

The first is that there are huge areas of hospital care in which mortality is simply too low to be useful as a blunt comparative measure. Mortality in obstetrics has now fallen to such a level, for example, that it would be perfectly possible to find just two deaths in an entire year in one hospital, and one in another. To conclude that the first delivers care that is 100% poorer than the second would be a conclusion that can only really be described as rash. Or, as Mencken would no doubt have told us, plain wrong.

That is not to say that these individual deaths shouldn’t be monitored and investigated: rare events such as a maternal mortality or, say, death following a straightforward elective procedure should be thoroughly investigated. It's simply that they cannot in isolation form the basis of an overall assessment of one hospital's care quality compared to another.

Again, don’t think that this is a wild exaggeration – we know of reports suggesting poor performance by a clinician, based on comparisons as meaningless as these. And we’ve argued before that the use of crude mortality figures in analysing Mid Staffs hospital distorted the debate. We don't of course mean that there were no quality problems at Mid Staffs: there were and it was appropriate to address them.

Interestingly these problems were highlighted by patients and relatives some time before various organisations began to raise any issues. Unfortunately, once information analysis began to appear, it focused on mortality data and drew conclusions from the figures which they couldn't properly support. Many of the problems at mid-Staffs were on wider quality issues that the patients identified but weren't measured or when highlighted did not appear to be investigated. 

The temptation to make mortality a focus is understandable. It's a measure that's easy to obtain because hospitals routinely record their deaths. So it's natural to want to tot them up and convince ourselves that we then have a valid measure of comparison.

Well, do we? Here we come up to the second objection to mortality as an idicator. Let's start by taking another look at length of stay. If a hospital keeps patient stays short, might that not reflect a lot of early discharges, including perhaps a number of patients who go home and die there, with the result that they’re not included in the hospital’s death figures?

And what about transfers? If one hospital is transferring a high proportion of particularly ill patients to a tertiary referral centre, won’t its own mortality figures be artificially reduced while the receiving institution’s are inflated?

That’s why if you’re going to use mortality as a measure of quality, you need firstly to ensure that you’re applying it to specialties, conditions or procedures where it makes sense, and secondly that you’re measuring not just in-hospital mortality but also mortality after discharge, choosing a period beyond discharge that is appropriate to the patient's condition.

Now HES data has been analysed with Office of National Statistics death records linked to them, on an annual basis, for some years now – since about 2002. This means that since then it has been possible to take a look at mortality following hospital treatment in a much more comprehensive and useful way. What’s surprising is how few NHS and commercial providers have taken advantage of this information.

It’s not as though there haven’t been innovative thinkers who’ve used this kind of data to produce interesting conclusions. For example, we have the National Clinical and Health Outcomes Base (NCHOD) studies on 30-day mortality following emergency admissions for stroke. This has all the characteristics you’d want: an area of care – emergency strokes – for which mortality is a useful indicator, and the right measure, taking in much more than deaths in hospital.

As it happens, this analysis itself needs to be taken further. Mortality, like length of stay, is only one measure and can still mislead when used in isolation. It really needs to be supplemented by looking at indicators concerning the quality of the care itself. Useful measures have been proposed and are being used by the Royal College of Physicians, including the type of facility that treats the patients, the provision of thrombolysis and the effective monitoring of patients in the first few days of admission, all factors which improve the outcome of care. This is a subject to which we might return in a future post.

Using the Royal College of Physician indicators would improve the analysis. However, at least the figures published by the Department of Health back in 2002/3 showed a way forward towards a more rational use of mortality figures themselves. It's disappointing that eight years on so few have followed that promising lead. 

Perhaps we can start to catch up before the decade is over.