NHS information: is a supply or a demand side revolution required?

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The curious thing about the NHS reforms is that the principles which underpin them are popular.  It is only when you get to the implementation that the trouble starts.  It is worth remembering that many of the more vocal critics actually welcomed the initial principles set out in Equity and excellence: Liberating the NHS.   A failure to communicate the need for change last year, a clumsy and unclear bill and finally the ‘pause’ may have tipped this cautious welcome into (in some cases) outright opposition but the fact remains that it is not the principles, but rather their translation into practice, which remains the biggest challenge.

Nowhere is the paradox between principle and application more apparent than with the ‘Information Revolution,’ personally launched by David Cameron in opposition, which is intended to decisively shift the balance of power away from providers (and even commissioners) and towards service users. 

The ambitions for the Information Revolution are high: drive quality improvements, make scandals a thing of the past by shining a light on the dusty corners of healthcare where they tend to occur and put patients in the driving seat by enabling them to understand what is really going on within their health service.  Who could possible disagree with these intentions? Yet, as Hannah Cornick and Paula Pohja recently wrote, declaring an information revolution is much easier to do than actually making your policy revolutionary or for that matter informative.  Remember, the previous government also had an information revolution back in 2004, although – then again – you may not have noticed it.

Those historians reading this would point out that sometimes it takes one revolution to fail before another can succeed.  So, will this revolution do better than what went before?  Will the use of information become a central principle in a liberated NHS, providing the common language through which patients, commissioners and providers can interact?

The policy has already had some gains.  The NHS Information Centre is getting better at publishing information in a useable format and now occasionally resembles an organisation which is committed to releasing data rather than simply hording it. The publication of the situation reports provided by NHS organisations to the Department of Health gives us a better idea of what is going on at the frontline (and what the Department of Health knows about it) and the release of information on mixed sex accommodation breaches (which was achieved in the teeth of opposition from some senior parts of the NHS), appears to be having an effect, even before the impact of fines for those committing the breaches has been felt. 

There is still more to do on the supply of data.  Many providers remain poor at the way in which they code data and Caldicott guardians are often brought out in a cold sweat by the cavalier way in which some organisations handle sensitive information.  There is also a clear case for greater clinical involvement in ensuring the quality of information and no doubt the much-delayed Information Strategy will go some way to addressing this.  Yet much of this is incremental and hardly worth of the description ‘revolutionary’.  It is easy to forget that the Department of Health was already publishing innovative data (tidied up to address coding issues) on, for example, the performance of cancer providers and commissioners before the General Election.

So if this revolution is to be about more than excitable rhetoric, then something else will be required. But the professions and patient groups have already expressed well-founded fears that the disclosure of raw information could have severely detrimental – albeit unintended – consequences, creating a risk that patient confidentiality will be breached or that information will be used in perverse or harmful ways.  Any revolution needs someone to oppose it, but this fight seems unnecessary and in case is one too many for a government already showing a few too many bruises from clashes with the professions it has professed to want to put in the driving seat of health policy.

Perhaps the focus on supply of information is misplaced anyway.  It is worth bearing in mind that in economics revolutions can occur on the demand as well as the supply side.  In the same way as chancellors can use supply and demand side measures to adjust the economy, so can health secretaries in the field of information.  Given that the current incumbent of Richmond House is nothing if not an enthusiast about economic theory, it is surprising that more attention has not been focused on how demand for information could be stimulated.

The NHS has always collected and published reams of data but the way in which these have been used by the intended ‘consumers’ of information – patients, commissioners and healthcare professionals – has been patchy at best.  What would it take to stimulate demand for improved information? Progress has been made.  At a clinical level, some of the national clinical audits are now being used by teams, alongside patient experience data, to focus on areas where improvements can be made.  For commissioners, improved data on provider quality should help them have informed discussions on the quality as well as cost of care when it comes to negotiating contracts.  Yet for patients, the gains have been smaller.  True, initiatives such as iwantgreatcare.com and the ‘rate my care’ function on NHS Choices have started to show how the lessons from consumer involvement in other sectors of the economy could be applied to patients in health. And information published by the Rarer Cancers Foundation on the Cancer Drugs Fund has been downloaded over 7,000 times, showing the public demand for information is there and organisations such as the Alzheimer’s Society have done good work in scrutinising variations in the quality of care through its dementia map.  Yet these are baby steps in comparison to the size of the prize (and the task).         

The reforms are about getting patients to act as consumers, making (hopefully) rational informed choices and therefore shaping the behaviour of providers by making them respond to what patients most want.  Yet we are some way before patients have the information to do this and still further from the situation where we have a health culture which encourages such behaviour.

Processing and presenting data in a way which can be used by the intended consumers of information is a complex and expensive task.  Leaving this to the ‘armchair auditors’ much beloved by Eric Pickles is not going to provide the sustainable basis for a demand side revolution in health.  Nor is entrusting the people who collect and process information going to be sufficient, for their cultural mindset is more about perfecting the data than it is presenting it in an accessible and usable format which drives real change.  This will have to be one for the charities to lead, alongside others who are in touch with what really matters to patients.  in return, providers and commissioners will need to be responsive in how they react, and be able to scale up (and scale back) their capacity to meet the demands of informed choice.

Achieving all this will, though, require investment and who will provide this?  Resources are not plentiful at Richmond House and there are severe restrictions on the extent to which providers could fund investment in information ventures (as has happened in other sectors of the economy).  Whether there is the political appetite to lift these restrictions (which would involve enabling providers to invest more in advertising or supporting independent information sources in the way that, say, hotels do with trip rating sites).  The Department of Health will need to address this funding and capacity gap if the Information Strategy is to be a truly revolutionary statement of intent.  The Big Society alone will not do it and simply releasing a couple more datasets, interesting though that may be to NHS watchers, will miss the point.

If the Government’s policy on the use of information on health services is to succeed, then it will require a demand side revolution every bit as much as it will a supply side one.  Andrew Lansley, David Cameron and Nick Clegg need to discover their inner-Keynesian and think more about how demand for high quality information can be better stimulated.  Judging by their economic policy, this is pretty well hidden but the success of the Information Revolution will depend on them uncovering it.

If you are interested in the themes discussed in this blog, I will be attempting to apply them to the field of cancer information when I give the Brian Cottier Invitation Lecture at the National Cancer Intelligence Network Annual Conference on Wednesday 15 June 2011.