Feature

The people’s verdict

‘Consultation’ just isn’t good enough now that controversial rationing decisions have become a central feature of the NHS. Joanne Lenaghan proposes a better way to involve citizens in public service decisions

One in six health authorities is now explicitly excluding certain treatments from public provision.¹ Who is making these decisions, and according to what criteria? What opportunities do the public have to challenge or to be involved in these decisions? The Local Voices initiative, launched by the government in 1992, urged HAs to involve local people in their purchasing processes. Berkshire HA recently decided to exclude certain treatments, and then ‘consulted’ the public on its proposals. This raises an important issue: what are we trying to achieve by consulting the public? Do we wish to consult the public about decisions already made, or involve them in the decision-making process itself?

A recent report by the Institute for Public Policy Research, Voices Off,² found that consultation methods employed by different HAs varied widely, with techniques ranging from postal surveys, public meetings, focus groups and opinion polls. None enabled members of the public to define the aims of the exercise or the methods involved. At IPPR we have been working on several projects to develop and encourage a habit of active citizenship in areas of public policy such as health provision.

Why shouldn’t citizens be allowed to participate actively in decisions which affect them in their own communities? Some professionals retort that ordinary people just aren’t capable of making some of the difficult decisions that have to be made in the provision of healthcare, and are fearful or sceptical about the possibility of meaningful public involvement. Certainly, many of the techniques commonly used, such as opinion polling, would indicate that the public simply ‘do not understand’ the difficult choices which have to be made. (eg they may favour treating premature babies over preventive medicine). However, these studies may reveal not the inability of the public to grasp the issues but the paucity of the techniques used.

The IPPR is about to pilot a radical new way of helping to decide key issues in health purchasing and planning. Citizens’ juries are small groups of citizens (12-25) selected to represent the general public rather than any interest group, who meet to deliberate on a policy question. The jury typically sits for three to five days, is informed about the issue, takes evidence from witnesses, and takes part in extended discussions before reaching a consensus, which is then documented and explained. The commissioning authority does not have to abide by its decision, but must take account of it, and give written reasons for any disagreements. Citizens’ juries have been used in Germany and the US to reroute roads, rebuild town centres and set guidelines for welfare policy.

In America, President Clinton’s Health Care Reform Bill was put before a jury of 24 citizens, who were asked, among other things, to vote for or against the proposals. During the discussions, the jurors discovered the ‘single payer’ approach, advocated by a Democratic Party senator. They liked his plan so much that they invited him back twice to hear more about it. Instead of a ‘yes/no’ response to Clinton’s health plans, jurors were allowed to respond on a number of different issues, coming up with 25 recommendations for healthcare reform. This illustrates the fact that a citizens’ jury actually empowers the participants to engage with and, if necessary, change the question and the agenda.

Citizens’ juries are based on the belief that, given enough time and information, ordinary citizens are more than capable of making decisions about complex issues that affect them. They are a meaningful and unbiased method of obtaining the views of the local community, rather than those of vocal interest or pressure groups. Citizens’ juries are also about encouraging a habit of active rather than passive citizenship. Citizens’ juries are not an attempt to replace existing democratic structures, but to facilitate and enrich them.

Following extensive consultation with members of health and local authorities, IPPR has recently developed draft guidelines for citizens’ juries in the UK. I am currently working on a project which aims to assess the feasibility and/or desirability of developing citizens’ rights to healthcare.³ This is an attempt to take a radical approach to the whole ‘rationing’ debate. Which treatments should be available on the NHS, who makes these decisions, and according to what criteria? Also, what rights should citizens have to challenge a decision with which they disagree? As the case of Child B demonstrates, we do not have any enforceable rights to healthcare in the UK.

These issues are being discussed among academics and health policy gurus, but IPPR believes it is vital that the public is given an opportunity to participate in and influence this debate. It believes that citizens’ juries may offer this opportunity, and is therefore planning to pilot them over the next few months, with the co-operation of a health authority.

Since the publication of Citizens’ Juries in 1994,⁴ IPPR has had an overwhelming response from members of HAs, keen to explore the potential of this consultation method. This model seems to offer one means of tackling the democratic deficit. Controversial decisions about public health provision are being made by unelected and unaccountable members of health authorities, which have little legitimacy or support in their communities. The public as tax payers and potential/existing patients have the right to a say about the future provision of the NHS. Health authorities have not only a duty to listen, but also a vested interest in involving the public in the decision-making process. There are difficult decisions ahead, and it is likely that there are no right answers. So it is vital that the process is valid, and seen to be so.

The advantage of citizens’ juries is that members are given enough time and information to make informed decisions about quite complicated issues such as health. This method is designed to encourage informed and qualitative responses. Many questions about healthcare planning and provision are not easily reduced to a ‘yes/no’ answer. A citizens’ jury allows the public to ascertain the values and opinions which have led to its conclusions, as all the discussions are transcribed.

Finally, a citizens’ jury is an empowering process in itself. It brings together ordinary members of the public, who may have different views, and allows them to discuss and debate with each other at length. Many jurors in Germany have commented that it is only during the discussions that they realise not only what they think, but also why they think it. Jurors realise that they are capable of making responsible decisions about what initially seem complicated issues, and this encourages their active participation in society, and confidence in their ability to influence public policy.

Citizens’ juries do not resolve all the problems inherent in making healthcare decisions. Nor would IPPR claim that they are the only or indeed the best form of consulting the public. It would appear that different methods may suit different ends. No-one would suggest that a short and simple yes/no issue would require a full citizens’ jury, just as the future configuration of health services provision in an area should not be the subject of a superficial opinion poll.

But citizens’ juries do appear to offer a new and exciting method of involving the public in issues that require information and deliberation in order to reach a meaningful decision. This method also offers us an opportunity to engage the public in a new democratic process, which empowers the participants rather than those asking the questions. Citizens’ juries may be one instrument among many that will enable us to reduce the democratic deficit between health authorities and their communities. This is essential if health commissioners are to obtain the support and understanding of the public for the difficult choices that lie ahead.