Putting patients first by measuring what really matters

30 April 2014

Current reforms to the health care system mean that clinicians need to make services more person-centred, but how can we measure the degree to which this is happening? We spoke to OnlyWan Clinical Associate Dr Alf Collins about his new thought paper on the topic.

Why is it difficult to measure person-centred care?

I’ve been talking to groups of clinicians about person-centred care for 20 years now. Often I’ll start by saying: ‘hands up if you’re not person-centred’. It’s rare that anyone puts their hand up. We all think we’re person-centred, but in reality it means different things to different people.

Part of the problem is that we still haven’t really defined what ‘person-centredness’ is in different contexts. Until we do that we can’t describe to the workforce exactly what it is we want them to do differently, and we can’t measure whether they’re doing it or not.

Tell us about your thought paper

Measuring what really matters puts forward a number of ideas to help health and social care providers and policymakers think about how to construct a measurement system that always puts patients first.

I’ve tried to define some of the key principles of person-centred care and show how they are implemented through person-centred activities (like self-management support and shared decision making) and also what that looks like in different clinical contexts. Then I discuss the kind of process and outcome measures we need to develop for person-centred care and how we might go about constructing such a system.

What do we need to do differently when it comes to measuring care?

At the moment the health service is really good at measuring hard data – the biomedical information at individual patient level. We do the same at population-level, where we’re good at collecting system data, like the number of people who’ve had a blood pressure test in the last year. Most activities in the health service are focused on bringing about or defining measures which are clinical or system-focused, not personal.

But what can seem like a great clinical outcome for the health system, can often be perceived quite differently from the patient’s perspective; we’re just not measuring the right things to know whether care has been good or not from the perspective of the individual. If we want our systems to be more personal then we need person-centred measurements.

Things are moving in the right direction, using surveys to ask people how informed or involved they’ve been to get their views on the quality of care they’ve received. But these are used in inconsistent and ad hoc ways, and it’s still not always clear how this information is helping to make care more person-centred.

So it’s about measuring from the patient’s perspective rather than the system’s?

Well it’s not quite that simple. For example, I work with people with long-term pain, helping them to live with their condition. The goals they initially set for themselves are often aspirational, they may not be completely obtainable no matter how much care or treatment they get. But those goals are still useful to them to help them think about the values that they want to live by – what really matters to them in quite a profound sense.

What we should be doing is asking people what they want to achieve personally with their health, and what they want from public services which will help them achieve those things. We should be routinely collecting data on whether people are supported to move towards those goals and whether they receive information and support in a style and context that makes sense and is helpful to them.

Can we measure person-centred care the same way in all settings and at all levels?

It’s easy to work out what a person needs at an individual level but when you try to turn that into data that’s meaningful at a national level, it becomes very difficult.

Person-centred care also looks different in different contexts. Supporting a patient to manage their long-term condition is very different from dealing with an acute life-threatening situation. In some settings, A&E for instance, clearly the service needs to be task orientated. But the principles of person-centred care are still relevant, you might just apply them slightly differently. In developing a measurement system for person-centred care, one of our tasks will be to match the right indicator to the right context.

In reality the idea that we’re going to be able to develop one generic measure that works both in the clinic and for national benchmarking is fairly unlikely. As the OnlyWan’s recent rapid review concludes, there is no silver bullet when it comes to measuring person-centred care.

Will finding the right measures help improve care?

I think measurement can help to drive the performance of our health system and improve the ‘person-centredness’ of care. But it’s got to be the right measures, in the right place, at the right time. The wrong measures could take us off in completely the wrong direction.

Whatever happens, the measurement needs to be practically useful to both patients and clinicians. In other words you don’t just collect the data and give it to your line manager, you actually use it in the clinic to drive your work as a clinician. Then people will truly understand the value of being person-centred because they’ll see how it improves care on a daily basis.

Further reading

Thought paper

Measuring what really matters: Towards a coherent measurement system to support person-centred care

The principles of person-centred care, activities that a person-centred system should undertake in different contexts, and ho...

Research report

Helping measure person-centred care

A rapid review of research about measuring the extent to which care is person-centred.

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