A week is a long time in shared decision making

Last week was a week worthy of reflection.

Monday saw the publication of the information strategy – The power of information – which sets a ten-year framework for transforming information for the NHS, public health and social care.

The strategy gets off to a good start: ‘The success of this strategy depends as much on a culture shift – in the way patients, users of services and professionals think, work and interact – as it does on data or IT systems’ is a welcome recognition that technical solutions are not sufficient.

This is followed by a bold ambition that ‘information will be regarded as a health and care service in its own right for us all – with support for those who need it to access and use available information’.

The information strategy then puts a concrete – if still rather vague – marker in the sand: ‘A partnership bringing together representatives from the voluntary sector, health and care professions and industry will consider how to make the most effective use of its combined skills, experience and resources to engage directly with us as patients and the public, increase our health literacy and support information producers to communicate effectively in ways that are meaningful to us.’

Monday left me with hope. A good start to the week.

Along came Wednesday and the publication of Liberating the NHS: No decision about me, without me – Further consultation on proposals to secure shared decision-making. The document quickly reveals that it is not about shared decision making at all. It is about choice of provider. Years of evidence from academic research and patient feedback showing that patients care more about exercising choice in relation to their direct care and treatment than about being able to choose between providers of healthcare, appears to make less noise in Westminster than a bedpan dropped in Tredegar.

A lack of clarity over what we mean by shared decision making is a major block to addressing the hard cultural and behavioural changes that are necessary truly to embed ‘no decision about me without me’.

Time to go back to the information strategy. Re-reading it, I realise that it is based in the notion that people behave rationally and that giving them information gives them power. Hmmm. We don’t have to dig further than the Euro crisis to recognise that, individually and collectively, our behaviours are moulded by far more powerful drivers than rationality.

Information is not power. Knowing the qualifying time for the 100m for the Olympic men’s team was never going to mean I had a chance of qualifying. Knowing how an egg is fertilised will never get me pregnant. Knowing there is a pot of gold upstairs will not help me if I am in a wheelchair and there is no lift. And knowing that my patient needs to lose weight to better manage their diabetes will not mean they will do it just because I told them and they now know.

Information may be necessary, but it is never sufficient. Information can enable me to make choices only if I have the capabilities and capacities to use it and live in a culture and context which would make my choices real.

Has the Department of Health got it? Wednesday left me with doubts: the alarm bells were ringing in my ears.

Roll on Thursday, and the appointment of Tim Kelsey as National Director for Patients and Information. Tim was the final appointment to the national leadership team of the NHS Commissioning Board Authority. The other directors are in post, getting their feet under the table. Is this indicative of priorities?

And what of Tim? His pedigree in promoting a transparency agenda in health is almost unrivalled. But of his pedigree in behavior and culture change, health literacy and patient activation, supporting new relationships between service users and services, I know less.

And what about his portfolio? Is putting information and patients together another manifestation of an underlying assumption that if you give patients information you give them power?

Thursday left me with questions. There is a tension in government, in the Department and in the Commissioning Board. On the one hand we can discern a technical and mechanical view of the world in which information leads to power and choice leads to control. On the other hand, there are inklings of complexity, in which culture and behaviour are driven by relationships. How will this tension play out in the corridors of Westminster and the boardroom of the Commissioning Board?

Adrian is Assistant Director at the Health Foundation.