Patients as 'active agents of change' - a societal challenge

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Hilary BrownHilary Brown, Health Services Management Centre, University of Birmingham

There’s been a lot of hand-wringing and soul searching about the state of the NHS and how it can best respond to the challenges ahead; and the contribution of the service user, or citizen, in meeting those challenges is gaining more attention. The argument goes that if we keep on treating ill-health as we have done, rather than doing something more radical to get people to take more responsibility for staying well, the NHS will fall over. At the launch of a report from the IPPR recently on Reinforcing the power of citizens and communities in health and care, ex-Labour Health Minister, Alan Milburn followed this theme by talking about treating patients as ‘active agents of change’ rather than ‘passive bystanders’.

Liverpool is trying to do something more radical as the recent Panorama programme showed. The city, which has some of the worst health outcomes in the country, has styled itself ‘Healthy Liverpool’ and healthcare and local authority professionals have joined forces to increase life expectancy and improve quality of life. It showed the uphill struggle we are up against as a society, if we are to truly achieve patients or service users as active agents of change. In the programme, we came across a local GP who was trying to persuade a patient to take up some kind of exercise – his response was, ‘I can’t be bothered.’

As the recently published Five Year Cancer Strategy – Achieving world-class cancer outcomes: a strategy for England 2015-2020  points out, four out of ten cancers are caused by people’s lifestyle choices such as smoking, drinking excessive amounts of alcohol, poor diet, and lack of exercise. There have been great strides in improving cancer outcomes in England but activity is inexorably rising and the pressure on the service is increasing as our work with Cancer Research UK over the last couple of years demonstrates. For those delivering cancer services, it must feel like a Sisyphean task – rolling that boulder of improving outcomes up to the top of the hill, with mammoth efforts, only to see it roll down again as demographic time bombs explode and other lifestyle factors come to the fore.

We need the Cancer Strategy to set a clear direction for the service for the next five years but we also need strategies to work with people who feel there is little point in investing in their own health, and who feel overwhelmed by the task at hand even if they did have an inclination to do something about it. How do you convince someone who is possibly out of work, living in poor housing, and perhaps has recently split up from their partner; to stop smoking, cut down on their alcohol intake, and take up jogging, in order to lower their risk of developing cancer, when they find it difficult enough just to get through the day? The Cancer Strategy talks about the pivotal role of Public Health in developing tobacco controls and action plans to address obesity; and it refers to facilitating people and empowering them to take responsibility to stay healthy, but it doesn’t say how we should do this.

‘Activating’ people to do something different requires a fundamental shift in our approach to behaviour change. It is far more complex than simply a matter of ‘tell them and they will stop’. Telling someone they should stop smoking is not a message people will be receptive to, if for them, smoking is perceived as a way of coping with psychosocial stress. To make the Cancer Strategy’s goals realistic, we have to do more to tackle head-on our thoughts and feelings about health and wellbeing, and how these are intrinsically linked to our social situation. 

The use of patient activation measures (PAMs) is gaining more traction here in the UK with a report published last year by the Kings’ Fund in association with Professor Judith Hibbard. Luke O’Shea’s subsequent blog calls patient activation the missing vital sign – a good description, for without it, no amount of information on exercise, free smoking cessation classes, or diet sheets for mothers will make behaviour change stick.

At a workshop on the use of PAMs organised by the Health Foundation a couple of months ago, I was struck by something a patient said about the need for health practitioners to ‘meet me where I am, not where you want me to be.’ The Cancer Strategy sets out a vision for where cancer services should be in the next five years but we also need strategies for how we will meet people ‘where they are’ rather than where we might want them to be, otherwise the ambitious targets for improving life expectancy such as reducing avoidable deaths from cancer cannot be achieved.

There are projects underway to introduce young people in schools to mindfulness, as a means of improving their wellbeing, perhaps we need a similar kind of movement to work with young people and adults to develop better self-efficacy – the confidence to exert control over their own motivation and behaviour and hence become the active agents of change in how health is perceived and how healthcare is delivered, rather than passive bystanders.

 

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