Patient choice, outcomes data and care quality improvement

Should we release clinical outcomes data to the public to inform patient choice decisions? The argument in favour of publishing outcome data is that it will allow patients will be able to make more informed choices. At a simple level, wouldn’t we all like to know that we were choosing the best possible treatment available to us, and to be able to act on that information?

I think that clinical outcome data should be released, but using it as the basis for patient choice is a mistake. We can do better than that.

My first objection is that not all groups will use outcome information in the same way. Not everyone has the capacity to understand outcomes data – it’s complex stuff, and often involves making trade-offs between waiting and quality, and quality itself can have measures that directly contradict one another. There’s a reason why it takes all those years to qualify as a clinician – our bodies are complicated. That means that measuring the performance of those who try and cure our illnesses and ailments is tricky. A few years ago I showed some surgery data to patients asking them which surgeon they would choose. They struggled to come up with any kind of meaningful answers – they found patterns in the data that weren’t there, and often came to the ‘wrong’ conclusions – they chose the surgeon with the worst outcomes. Coming up with a good format to publish information in, is a big barrier. We need something that will communicate clearly, but also not over-simplify. That’s a tough call, and it may not even be possible.

Equally, not every patient wants to exercise choice – indeed a number of surveys suggest that patients want reassurances their local healthcare provision is good, not choice. If it is the case that only particular categories of patient choose, then that creates a significant problem of equity.

This leads to my second objection. If we start trying to use outcome data for patient choice, where does the choice process end? How many providers to I look at? Do I compare everywhere? If I don’t mind travelling I might look at data for the whole country. The trouble here is that healthcare choices aren’t like choosing a microwave. If I get a bad microwave I might be cross, and it may take time to save up for another one. If things don’t go well after I’ve made a healthcare choice (especially on behalf of someone I love, like a child), then I’m stuck with cognitive dissonance. Should I have chosen something else? Did I do wrong? Sheena Iyengar’s book ‘The Art of Choosing’ gives a range of areas (including healthcare) where making choices can lead to long-term problems for people, even if they did everything in their power to make the ‘right’ choice.

We also have to place choice in the specific context of healthcare. We can’t let comprehensive providers of care fail – we don’t have the capacity or the political will to allow this happen. As such, we are stuck with our large hospitals, and the trick now is making the best of them. If people stop choosing the local hospital because of poor outcomes data, then that hospital will have its cost base undermined, but it won’t be allowed to close. Patient choice isn’t really a driver of improvement, it’s a kind of sop to make us think we are driving up care standards when we are really just trying to look after ourselves – and, as I suggested above, even that comes with potentially adverse consequences.

The problem is that the purchaser-provider split is an expensive nonsense. Choice doesn’t drive improvements. Commissioning doesn’t drive improvements. We have unused facilities in providers because purchasers can’t afford their use, and when those providers are NHS facilities with large fixed costs that simply sit around when not used, this is a dreadful waste of resource. We have hospitals dealing with emergency admissions because of gaps in community health services, but with no-one addressing the problem everyone knows exists as responsibilities are split between purchasing and commissioning. Choice feeds into the purchaser/provider logic, fragmenting service provision even further. This isn’t the way forward.

Improvements come from clinicians and managers working together to drive up standards. Outcomes data are a part of that – we need to hold clinicians and managers to be held to account for the service that they provide, and outcomes data are clearly one part of that.

But even more importantly, we need to be democratically holding our local health services to account. We need more than the old ‘health scrutiny’ role of local authorities – we need, in my view, for health services to be a part of local government so we can directly elect people to hold them to account.

Outcomes data can be a part of the democratic process to demand improvements. What defines us collectively isn’t our individual choices, but our collective decisions. We live in a democracy – and we need health services to be far more democratically accountable. Offering individual choices rather than facing up to the hard business of improving health services is bad for us all.

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3 Responses to “Patient choice, outcomes data and care quality improvement”

  1. David Walker Says:

    Your blog raises a question for me about knowledge. Is there a ‘cognitive minimum’ requirement: whether it ‘s possible to specify a level of understanding (of data) that theoretically would make ‘choice’ meaningful. If the answer is no, at the individual level, does the minimum need to be evident on the part of the scrutineers or those supeviising choice on behalf of individual patients. Direct election does not automatically solve the problem.

  2. Evidence Matters (@EvidenceMatters) Says:

    Sufficient comprehension of statistics and data (of whichever nature) may well be very limited, even in those charged with discussing such sensitive matters: see Most US doctors baffled by cancer screening stats.

    three-quarters of the more than 400 doctors surveyed believed better survival rates prove screening is a lifesaver although that’s not the case, researchers say.

    And nearly half thought early detection translates into saving lives — another common misperception.

    “This is really unfortunate because one of the things we always say is, ‘Discuss it with your doctor,'” said Dr. Otis Brawley, chief medical officer of the American Cancer Society. “This is evidence that your doctor doesn’t know.”

  3. Ian Greener Says:

    Dear both,
    Thanks for these comments. My view is that it’s always going to be extremely difficult to interpret clinical outcome data. But if it is your job, and you do it all the time, you’ve got a much better chance. David’s point is correct – there are no guarantees here. But if the alternative is expecting patients to somehow sort this out through their individual choices, I think my approach has a much better chance of working. It will need good institutional design and careful scrutiny – but it’s a great deal more possible than the patient choice driving care improvement model.

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