The blurred line between service improvement and direct care in the NHS

A recent story in the i-don't-care-about-the-facts-as-long-as-the-headline-attracts-attention online version of the Daily Mail claimed the NHS was about to violate patient confidentiality in the name of cost-cutting and rationing.

A flavour of the content:

NHS bosses are to trawl medical records of tens of thousands of patients to find out who is costing them the most money.
They will identify which individuals frequently see their GP, go to A&E or are on lots of prescription drugs with a view to ‘reviewing’ their care, and trimming their budget...

But concerns have been raised that the information will be used to drive down costs by rationing certain treatments or urging GPs not to refer patients to hospital. There are also worries that bosses will urge expensive patients such as the elderly to buy-in extra home-help or even move into a care home.

It has striking similarities to a national data harvesting project which has been put on hold after concerns were raised that sensitive details would fall into the wrong hands.

The NHS’s Care.data scheme was meant to begin last spring with information from millions of patients’ due to be uploaded so it could be analysed by experts to look at trends.

The story originated in the primary care journal Pulse which took a slightly less tabloid tone but argued much the same points.

One thread of comment on the story on twitter ended up in an ill tempered argument with one of the guys from MedConfidential (the antagonists were both a little ranty, to be fair). Here is how it started:

So you've read the Southend proposals in detail, then @sib313? Integrated care is essential; mixing in secondary uses makes it a #caredata

— Phil Booth (@EinsteinsAttic) June 10, 2015

The issue that is worth expanding on at lengths unavailable on Twitter is the issue of what counts as secondary use of data and what counts as data for direct care. The Twitter thread ranged over many issues but care.data came up a lot and the issue of patient consent for secondary uses was a major topic. 

Phil Booth, I think, believes that there is a very clear dividing line between data used for direct care and data used for secondary purposes. I don't, and I think the Southend story is a good illustration of this (though I have only read the newspaper stories so I can't be 100% sure).

Before I get to the meat of the argument, though, I should say that I actually agree with MedConfidential that patient consent is important and the system should not causally ignore patient wishes. I disagree that the risks of sharing to patient confidentiality are high or that the harms that could arise are large, at least when using careful controls over the use of the data. And consent is supposed to be informed which is hard to achieve when so much abject nonsense is talked about the potential risks and harms of systems like care.data. All data sharing involves some tradeoffs of risks versus benefits and the current NHS leadership has done a remarkably bad job of explaining either side of this.

The big problem Phil worries about, I think, is that while patients mostly don't mind the system holding records for the purpose of treating them, they sometimes object to the use of their data for research or commercial purposes. For example, it is possible to use pseudonymised data to test whether overprescribing of anti-ulcer drugs puts more people in hospital from heart attacks (this is a real research story from PLOS 1). This is relatively unobjectionable. Or, commercial firms could use similar datasets to produce more accurate insurance premia based on your postcode. This worries a lot more people. Some patients don't want their data extracted for either of these purposes, perhaps due to the perceived risks to confidentiality. The important point is that both of these uses of data are clearly secondary: the data isn't being used directly for the treatment of an individual patient.

But the Southend case is a lot blurrier. The local CCG wants to identify patients with frequent visits to A&E or large numbers of prescriptions and so on. Phil argues that this is a secondary use of the data and that many patients might object. The tabloid bullshit spin says it is all about rationing and other evil purposes putting it on a par with torturing kittens or something.

But consider this. Many of the frequent fliers (a somewhat derogatory term for patients who turn up a lot) are using NHS services frequently because something has gone wrong with their care. Asthmatics, for example, sometimes end up in A&E because they have acute exacerbations of the disease and can't breathe properly. But the reason is frequently because they are not properly trained to use their medication. Some don't use their inhalers properly and some are just on the wrong mix of drugs. The issue about identifying those people is not so we can ration their care; it is so we can improve their care. If we give them the right care in the first place they won't need to come to A&E so often: they benefit and the NHS benefits.

We can identify these patients by extracting their GP data and joining it up with hospital data. When we know who they are we can do something about it and improve the care they get. The question is: does this count as a use of data for direct care, or is it a secondary use? Phil Booth seems to be worried that the use is secondary and that patients might well object to the data being shared for this purpose. I think that this case shows that there is no clear dividing line between the two. (I hope we would both agree that the joined-up data should be handled very carefully so accidental breaches of confidentiality do not occur).

The use of patterns in data to identify problems with care seems to me to be something few could have an objection to. It clearly benefits individual patients and the care they get despite the grotesque Daily Mail jeremiads. But this use of data site somewhere between a clear use for direct care (your doctor looks at your past prescribing records before issuing a new prescription) and a use for secondary research (we look at millions of records to test for a excess number of heart attacks in people taking an ulcer drug). 

To me (and I'm a data scientist so perhaps I'm biased) the use of data to improve the NHS is important. It might even be the most important way to meet the efficiency targets in the 5-year Forward View. But these benefits form a continuous spectrum from the direct to the secondary and pretending there is a clear dividing line just make achieving the benefits harder. If we explained these benefits more carefully we might be able to have a more sensible conversation about whether patients should consent to their data being shared.

The Southend experiment isn't (I hope) some Orwellian plot to abuse confidential records but a sensible approach to doing a better job of care for the patients who need it most. Besides, despite what Pulse claims, plenty of other health economies are already doing the same thing (as far as I know).

I'm mystified how anyone thinks we can run the NHS effectively at all or keep improving it if we don't use data this way.