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It is the lynchpin of health policy for third-term Labour, but how much does the public understand about what choice offers? Rebecca Rosen reports on new research.

The mechanisms and infrastructure needed to support patient choice in the NHS are creaking into place. Payment by results is being rolled out across the NHS.

The first five independent treatment centres opened their doors during 2005, with several more due to begin work soon. Primary care trusts across the country have contracted with multiple providers and an army of primary care trust staff are installing the software necessary to support choice in GP practices. And while few GPs have yet engaged with choice at the point of referral, their computer screens are starting to glow with referral options for elective care.

Encouraged by the early reduction in waiting times associated with the introduction of new providers of elective care, the government now wants to extend choice to other parts of the health service.

The policy context

The healthcare outside hospitals White Paper is due in early 2006 and the government is searching for new ideas across the whole range of community-based services: from pharmacists, GP clinics and walk-in centres to integrated care teams for people with complex chronic problems.

Developing contestability and choice in primary care is a key theme in these deliberations.

Recent policy on managing long-term conditions also has important implications for choice. For example, a competitive market between providers of disease-management services is under consideration. Social services pilot schemes have offered people with complex health and social problems the option of using direct payments as a mechanism for exercising choice. Another key policy strand is support for self-management.

But it is not even clear that more choice of provider is what is most needed for long-term conditions. An alliance of voluntary sector groups representing people with long-term conditions (17 million voices) argues that responsiveness to individual preferences and opportunities to participate in treatment choices are every bit as important as choices between different institutions.

Choice in healthcare is not a new phenomenon.

Patients could choose which NHS hospital they wanted to go to until the launch of the internal market in the early 1990s. More generally, choice – for example, of treatment – has always been part of the clinical dialogue between patients and healthcare professionals. And the right to choose between GPs has always existed in theory. Few have made these choices so far, but as publicity about choice increases it will be important to understand how the public responds to these new opportunities.

Evidence to date shows a mixed picture of public awareness about choice. Two MORI surveys revealed a growing awareness of NHS policies on choice (up, for example, from 27 per cent in 2003 to 37 per cent in 2005 among respondents to two surveys conducted around Birmingham), but low levels of confidence in individual ability to make the right choice without advice.

Research on the London choice pilots reported that 60 per cent of people opted to change provider. Yet government figures for the uptake of choice across all schemes show that less than 20 per cent opted for a hospital other than their most local provider.

As the December nationwide introduction of choice at the point of referral approaches and one of the flagships of the Labour reform agenda is about to set sail under the assumption (so far untested) that our choices and preferences will result in better and more efficient services. It remains to be seen whether the public embraces the choice agenda with sufficient enthusiasm to drive improvement – or whether it wants it at all in these other areas of health care.

How should the choice agenda be extended?

Will people be more enthusiastic about choice in some areas than others? How will the government and NHS organisations respond to the introduction of greater choice (with its foreseeable and unforeseen consequences)? What will be the response to hospital failures that arise as a result of choice, and what regulatory framework will encourage innovation without excessive destabilisation?

The King's Fund work programme on choice addresses some of these questions and aims to explore the factors influencing public and professional choices and identify ways in which attitudes to choice change over time.

As part of this programme, the King's Fund ran a series of focus groups, sponsored by Pfizer, to explore public attitudes to choice.

The groups were held during June and July, with participants drawn from all age groups and recruited from urban and rural environments in England, Scotland and Wales.

They explored people's recent experiences of choice in relation to healthcare; how they go about making choices and the kind of information they would like to support them. The focus groups also explored areas of choice that do not yet exist in the UK – specifically the use of direct payments as a mechanism for exercising choice and the ability to choose to go directly to a specialist without first seeing the GP.

They also sought to explore views about choice held by people with a long-term condition, with two of the groups made up entirely by people living with one or more long-term conditions and the other groups, including up to 50 per cent of people with a long-term condition, in line with current public health policy.

What the public says

The focus groups confirmed much that is already known about choice: there was considerable support for the idea, but also scepticism.

Participants had concerns about how to access the necessary information to inform choices. Even if such information were made available, participants were not confident about how to obtain and interpret it, and saw a key role for their GP in this respect. In addition, many expressed their loyalty to the current NHS, questioning the value of supporting new providers rather than propping up existing services.

People wanted information on waiting times and transport facilities at each hospital to make their choices, as well as information about hospital performance, infection rates and visitor arrangements. For some, more complex information about the clinical outcomes of care by individual surgeons would also be important.

These participants were typically frustrated by the lack of information in this area.

They also revealed areas of scepticism, including repeated calls to abandon spending on new facilities and increase investment in existing NHS trusts. Several people voiced frustrations about choices they had been denied – particularly those living with long-term conditions.

For some this was demonstrated by the complete absence of choice when choosing a GP.

Others had identified expensive new drugs or high-cost operations they felt they needed that no health professional had ever mentioned. A discussion between focus group participants in Edinburgh illustrates this: 'There are so many drug treatments now available for certain things that they won't offer you because it will cost them money. So you actually have to say, "My choice would be…" I want the best medication that I could get.' 'Yes…I need a new treatment for diabetes, but it wasn't the one I was offered by the doctor. She told me why I wasn't offered it – because [it] was very expensive. However, I eventually got it.' Among those who had shared such experiences, the more assertive had confronted their own doctor, learning that high cost or concern about limited evidence of effectiveness underlay the professionals' decision not to mention the treatment. Most had, in the end, managed to persuade the doctor to let them try the new intervention, but all who had shared this experience felt it made a mockery of choice.

Further themes emerge from a mass of data from the focus groups. First, choices about direct access to primary care and specialist services. Second, the experiences and aspirations of people with long-term conditions. Third, views on direct payments as a mechanism for exercising choice. And fourth, paradoxical views on consumerism, convenience and the public health implications of choice.

The future of choice

The focus groups highlight a series of tensions that must be confronted as ideas for the healthcare outside hospitals white paper develop. The government's public consultation meetings are highlighting well-recognised public frustration about limited access to primary care. But the focus groups reveal that there is, alongside the desire for better access, a well-developed and widely held understanding that making access too easy will encourage consultation for trivial problems – potentially at the cost of better care for those with more serious conditions.

The second paradox is that many people are aware of outcome variations for different clinicians and institutions. They want information on these variations in order to support choice, but few know how to obtain it.

However, if and when such information becomes available, it seems that some people will act contrary to one of the main drivers of choice in the NHS and choose to wait in order to see the best clinician.

Third are the comments on direct payments.

There was limited understanding of this approach to supporting choice, but among the comments was evidence of scepticism about this policy.

There was considerable support for the ability to choose unproven therapies and top up the value of vouchers. Any policy developments in this area will require careful consideration about the freedom to make choices that differ from a traditional professional belief (and not least the evidence) about what is good for patients.

In contrast to the deliberative approach of the health care outside hospitals consultations, where participants are asked to choose between various options, the King's Fund's work emerged from a more open discussion. They expose the paradox of public support for more choice and easier access to services, alongside the realisation that this will stoke demand in relation to minor problems and may not be the best use of resources.

© Copyright 2005 Emap