Editor's blog Wednesday 29 June 2011: Information poverty - the NHS's abiding sin

I attended an interesting session this morning thanks to Ipsos MORI, with input from a respected former health secretary. (Chatham House rules apply).

The theme was on a June 2011 survey on choice – the session’s title was ‘no decision about me without me – challenges for the NHS’. It focused on issues around information and choice.

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Many findings were not in themselves new: patient trust in clincians is very high. GPs are trusted by almost 90% of the population. (When the research is repeated, a good test might be to include the new category of ‘celebrities’; I think they might poll even higher.) It was observed that there may not be a strong correlation between this unrealistic level of trust in GPs and the reality of GP performance.

More interesting was the conversation about patients’ happiness to make or participate in making choices about their care. The Ipsos MORI research revealed high levels of confidence over primary care; levels of confidence were lower with choice of hospital provider, type of treatment, or individual consultant.

Hypocrisy - the homage that vice pays to virtue
Unsurprisingly, related research found that while the principle of involvement in local decision-making with regard to local government was supported, the number of survey respondents who would do so in practice was miniscule.

This is probably an attitude that reads across to health.

It was interesting to see that 63% of survey respondents trust doctors a lot or a little to decide how money is spent in the local NHS. When this was presented at the current BMA SRM, an informal show of hands of those doctors present found a far lower level of support: this correlates with the DH-funded recent NHS staff survey, slipped out on the same day as the Future Forum response.

Another intriguing figure was that 54% of respondents agreed that they ‘know where to get information about the quality of local services’.

Informing for choice
Information is obviously vita to driving informed choice – be it of treatment or provider (or even to refuse treatment). The political status of choice was discussed: the theological approach that it is the magic bullet for the NHS’s woes received short shrift.

Debates whether one is for or against choice easily confuse the political with the clinical, although it is generally felt that for clinicians to offer patients appropriate information and choices over kinds of treatment, involving them in decisions, is simply a part of contemporary medical professionalism.

Another challenge in this area is to disaggregate an individual’s willingness to be involved in their own care from their desire (or lack thereof) to be active in shaping care for their community. The NHS’s potential to engage appropriately on specific care redesign with expert patients was flagged as an opportunity.

The un-homogenous old
An interesting methodology point was raised that the categories of research can benefit from refinement. There are issues with lumping older people (the biggest users of the NHS) into 65-75 and 75 and over categories. It was observed that the over-75 age group, which will represent the highest need quotient, reported a decline in communication information and shared decision-making.

The finding that about half of those surveyed felt in the middle of the polarities of ‘I should decide’ / ‘my doctor should decide’ was thought to be consistent with international research.

Another observation was that patients with long-term conditions (the NHS’s core business) may want choices within care pathways. Choice is currently often viewed and picking a provider of acute care; reflecting the NHS payments system more than its major areas of expenditure.

Things we have known for a long, long time
Unsurprisingly, information and outcomes came up a lot. Many of the usual truths were aired: the NHS’s data-richness and information-poverty; the need to make data useable to differing clinical and patient audiences; clinical audits are underfunded; outcome data is of poor quality; the NHS remains poor at accurately ascribing costs of treatments, but can tell how much it spends on clinical staff.

The relationships between commissioners – key users of information to make choices, lest we forget – and clinicians, patients and communities are crucial.

More to the point, tailoring data into information that the clinical and public audiences can use remains a key challenge to driving meaningful change in the provision of healthcare to support long-term conditions.

The session was a pleasing change to the Dadaist debate around the Heath Bill.

If anyone actually started to put some resource and actual focus into driving information into everything the NHS does, then we would breeze The Nicholson Challenge and make a better health service.

Are you holding your breath?