What has been referred to as 'the largest ever public consultation exercise on healthcare services' was completed last month. The national press was quick to criticise, particularly the 'NHS census' involving the distribution of 12 million leaflets with a tear-off reply strip. Most reports gave space to those who condemned the short time allowed for reply or the lack of a methodologically sound questionnaire. Critics called it a 'useless PR stunt'.
Certainly, nothing quite like it has taken place in the history of the NHS. There has been extensive national consultation with service users over the desired shape of future services in maternity, mental health and cancer treatment. Also, the national survey of patients has elicited users' views and experiences of primary healthcare and coronary heart disease services. But consultation with the public or citizens, other than surveys, has been rare.
The critics have missed two important points in relation to the government's public consultation. First, the 'census' was not intended to be a survey - it did not aim to solicit the views of a representative sample of the public on a series of issues determined by policy makers. Given that surveys of both patients and the public are fairly common, this would probably have been superfluous. Also, in order to involve as wide a range of people as possible, the consultation adopted a strategic, multi-method approach (see box).
The aim of this consultation, which cost approximately£500,000, was to find out public priorities for spending the extra£20bn over four years which the government has promised to allocate to the NHS. The public consultation was itself part of a larger process that included listening to the views of NHS staff, and meetings with representatives from NHS professional organisations.
Testing public opinion about healthcare at a national level may be unique in the UK, but has taken place in other countries. Many have relied on surveys, but one or two have tried to engage the public more deeply in health issues.
The most well-known example is the public consultation carried out by the Oregon Health Services Commission on a minimum list of services to be funded under Medicaid. The approach adopted was to use community values to guide the priority-setting process.
Initially, public values were elicited through a survey, but the results proved to be unhelpful, so an alternative approach, involving facilitated small group discussion at workshops, was adopted. The Oregon approach has been criticised because those who attended the workshops were mainly middle class and yet they were making decisions that would affect the less well off who received Medicaid .
The New Zealand experience Closest to the government's recent exercise is probably the public consultation carried out by the National Health Committee in New Zealand. This was set up in 1992, with responsibility for advising the government on the priorities for the funding of health and disability services. Two public consultations were carried out in the first 18 months. The committee produced a booklet for the public and made this widely available through public libraries, schools, community groups and public meetings. The booklet sought public views on which health services the public valued most.
Those involved in the consultation identified six broad health service priorities: children's health services, mental health services, integrated community care services - including appropriate services for Maori - emergency ambulance services, habilitation/rehabilitation services and hospice services. The first three, together with environmental health, were adopted by the New Zealand government as its priority areas.
A second booklet followed, and this asked how the government should decide what services should be publicly funded. This time, instead of large public 'town hall' meetings, the committee organised group discussion with specific sections of the population. Workshops were he ld with groups such as elderly people , people on low incomes living in urban areas, people with disabilities, those living in rural areas, teenagers and Maori.
The aim was to achieve an agreement on a framework which the committee could adopt to guide its priority-setting work. The framework, which is used to assess whether services should receive public funding, included four criteria: benefit or effectiveness, value for money, fairness in access, and consistency with community values.
The committee continues to consult with the public and uses one or more of a range of approaches which include public meetings, consensus conferences, workshops, symposiums, public forums, meetings with groups representing specific consumer interests, discussion papers, and a newsletter which invites opinions from the 10,000 people to whom it is circulated.
The New Zealand example provides an illustration of how the public can influence health policy, and lessons can be drawn from it to inform public consultation in the UK. It showed that a multi-method approach is a good strategy if it is important to take account of a wide range of views, and this endorses the recent government exercise.
Another lesson concerns the amount of influence that the public should have over health policy decisions. This has been a recurrent issue among health professionals and researchers and one that was reflected in the news coverage of the current consultation exercise. Either the government had a plan for the NHS, in which case the consultation was a 'paper exercise', or it did not, and so was 'incompetent'.
In New Zealand the committee has developed a very clear line on how it uses the information gained during public consultation. It sees the public contribution as one strand among many that make up the final decision on any matter. Margaret Horsburgh of the committee has explained its approach in the following way: 'It is our responsibility to make decisions having considered as much information from as many different sources as is possible in the time available. Before any consultation exercise, it should be made clear that the contributions that are forthcoming will not, of themselves, be binding.
But it is equally important to show the steps that were taken and the information that was given weight in reaching the final decision. If the workings of a sensible decision can be set out clearly, the decision has a greater chance of being accepted, particularly by those who made some contribution to it.'
The consumer isn't always king If this guidance is to be taken to heart by the government, health secretary Alan Milburn will have to be less enthusiastic about adopting an approach in which the 'consumer is king'. This implies that consumers' views will carry the greatest weight and it sends the wrong message to health professionals, who fear that patients' expectations will be raised too high. It also assumes that patients and the public want to be responsible for decisions, when there is evidence to show that there are variations in the roles that people prefer.
In New Zealand, the National Health Committee consulted over priorities in the context of limited resources. In other words, unlike the UK exercise, the public were asked to consider which were the right services to fund and who should have access to them. It is understandable that the government would wish to emphasise the possibilities opened up by the new£20bn rather than the bleaker spectre of rationing, but in the long term it is difficult to see how this can be avoided.
Mr Milburn has said that this is the first time in the life of the NHS that every member of staff and every citizen will have the chance to give their views on the kind of health service they would like. Let us hope it will not be the last.
1 Tweedie N.£500,000 public NHS census 'a useless PR stunt'. Daily Telegraph, 1 June, 2000.
2 Daniels N. Is the Oregon rationing plan fair? JAMA 1991; 265 (17), 2232-2235.
3 Horsburgh M. The public's values and public choices - what do we know ? Paper given at 1st International Conference on Priorities in Health Care, Stockholm, 13-16 October 1996.
4 Lomas J. Reluctant rationers: public input into healthcare priorities, J of Health Services Research and Policy 1997; 2(2): 1-9.
5 Beaver K et al. Decisionmaking role preferences and information needs: a comparison of colorectal and breast cancer. Health Expectations 1999; 2: 266-276.
The government's consultation exercise over the NHS was rare in attempting to capture the views of a large number of citizens other than through a survey.
The exercise raised questions about whether or not the government had a plan for the NHS.
In the long term, the government may have to consult the public in the context of rationing.
Four-pronged approach: the consultation strategy
Individual elements, such as the 'census', cannot really be judged outside the context of the consultation strategy as a whole, which had four main parts:
Two one-day workshops took place in Leeds and London. These involved approximately 100 people recruited as a typical mix of the population. The workshops involved the public in small and large group discussion about the government's national plan for the NHS, held votes on key issues and drew up recommendations for the modernisation action teams which are working at developing and implementing the plan.
Ten focus group discussions involving approximately 80 people were held in locations across England. Each group involved particular categories of people who were likely to have different perspectives, such as those in different age or ethnic groups.
This included the 'census' in which 12 million leaflets with an attached freepost reply slip addressed to health secretary Alan Milburn were made available in a wide range of places. The reply slip asked for 'the top three things which you think would make the NHS better for you and your family' and for details of sex, age, postcode and whether the reply was from a member of the public or NHS staff. There was also a dedicated website with a comments option asking similar questions.
Patient and user organisations
There were telephone interviews with 30 of the main patient and user organisations. Also, junior health minister Gisela Stuart, chair of the modernisation action team with responsibility for patient care (empowerment), facilitated a series of seminars with patient organisations. Each modernisation action team included at least one representative from a patient organisation.