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My health: whose responsibility? A jury decides
  1. P Elwood1,
  2. Marcus Longley2
  1. 1Department of Primary Care and Public Health, Cardiff University, Cardiff, UK
  2. 2Welsh Institute for Health and Social Care, University of Glamorgan, Pontypridd, UK
  1. Correspondence to Honorary Professor P Elwood, Department of Primary Care and Public Health, Cardiff University, CF14 4XN, UK; pelwood{at}doctors.org.uk

Abstract

Background Medicines are likely to assume an increasingly important role in helping people to remain healthy. But there are few indications as to what information and other support people want when assessing the risks and benefits of medicines; what role they feel government and healthcare professionals should play in informing, advising and encouraging healthy people on the potential benefits and possible risks of prophylactic medicines; and, ultimately, where does the responsibility for maintaining a person's health lie?

Methods A Citizens' Jury was convened in October 2006 to consider these issues against the background of healthy living in general. The Jury was a broadly representative group of 16 people drawn from the community. A number of experts in clinical medicine, pharmacology and public health gave evidence and were questioned by the jurors. Vascular prophylaxis by a daily low-dose of aspirin was used as a case study throughout the discussions.

Results The judgements of the jury included a clear demand for more information on health issues in general and on prophylactic medicines in particular, together with a desire that the public be more closely and openly involved in decision-taking in all matters relevant to health. The jurors were generally receptive to the possible role of medicines in the maintenance of health and a majority argued that people should be presented with evidence on medicines with possible health benefits, even when there is disagreement between experts about efficacy.

Conclusion The strategy of the Citizens' Jury, alongside other deliberative methods, could clearly have an important and valuable role in the formulation of public health and social policy.

  • Policy sciences
  • public participation
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Introduction

The Prime Minister's Office website on 6 September 2007 highlighted the potential of Citizens' Juries to harness the ‘wisdom and experience’ of the British people on issues such as the future of the NHS.1 There have been other calls for a greater involvement of the public in decisions about healthcare and about the use of scarce resources within health and social services. There have also been calls for greater education of the public. ‘People should make their own choices… but these choices should be informed by good information and advice about the choices available… to help people make and carry out the right decisions for their own health’.2 A survey by the King's Fund confirmed that a high proportion of people want more information, advice and support ‘… to enable everyone to prevent illness and lead healthier lives’.3

The jury system was brought to England by William I in 1066.4 It was developed by Henry II (1154–1189) who decreed that a jury of 12 free men should arbitrate in disputes, and in the Magna Carta, signed by King John in 1215, trial by jury became the explicit right of every free man. Earlier judgements had been made by dictat by churchmen, by combat between individuals or by exposure of a suspect to an ordeal.

The procedure in the Citizens' Jury is closely modelled on the legal jury system—the underlying concept being that there are many issues that are best decided by a group of ordinary people, who have no vested interests and who apply their common sense and experience, having been presented with the best possible evidence by expert witnesses.5 Therefore, the main aim is to obtain informed comment from representatives of the general public6 and the procedure would seem to be especially effective in engaging the public on social and medical issues.7 8 In a medical or social jury, the witnesses are cross-examined by the jurors themselves. The whole process is assisted by a non-expert and disinterested ‘facilitator’ and conclusions and recommendations agreed by the jurors are summarised in a report.

Following the publication of a paper that presented a case for the wider use of prophylactic aspirin and suggested that individuals themselves should make their own decision,9 a letter in the BMJ called for public participation in the debate that ensued and suggested that a Citizens' Jury be set up.10 We responded to this challenge and, in order to explore attitudes to self-help in the maintenance of health more widely, the initiative was given the title: ‘My Health: Whose Responsibility?: the example of prophylactic aspirin.’ The intention was to explore differences between treatment and prevention, in as much as the responsibilities for treatment have been given to healthcare professionals while the responsibility for the maintenance of health is ultimately the responsibility of each individual person. However, we wished to explore with representatives of the general public the role that should be played in the maintenance of health by medicines, and the responsibilities of government, healthcare authorities and primary care physicians in providing information for the public on healthcare and the prevention of disease.

Throughout the low-dose aspirin in the reduction of vascular disease risk was used to illustrate issues relevant to preventive medicines. Aspirin was chosen because it is of proven benefit in vascular disease and of possible value in the reduction of cancer risk, it is inexpensive and is readily available to the general public, yet its benefits have to be balanced against undesirable effects.

Methods

The project was designed and managed by a small executive group, led by a Director (ML), and the whole process was overseen by a Steering Committee, the members of which had been drawn from a wide range of bodies involved in healthcare, with interests in both the topic and the methodology to be used in the enquiry.

A market research organisation (ICM) recruited 16 members of the general public using a quota sampling frame to ensure that the distribution of participants by age, sex, race and socio-economic group closely resembled that of the general community. People with a history of heart attack, stroke or serious stomach trouble were excluded. Ms Penny Roberts, Chief Reporter of BBC Wales, kindly acted as facilitator.

The jury sat during three and a half days in October 2006 in Cardiff City Hall. The 16 jurors had a prior briefing meeting with the Director and the Facilitator, and were introduced to several key questions that were to form the focus of their subsequent deliberations:

  • What is ‘illness’ and what is ‘health’ and what is the overlap between these?

  • What are my responsibilities, and those of others, in maintaining my health?

  • What help should I expect when making decisions about my health? Who knows best—the public, general practitioners (GPs) or hospital specialists, and to what extent, and in what manner, should I, as a member of the general public, be informed?

  • How should the risks and benefits of medicines be balanced in relation to the prevention of disease and the maintenance of health. Who should evaluate this balance and who should take the decisions about medicines and behaviours which will help maintain my health?

  • What is the role of the regulatory authorities?

Evidence on the role of government, health authorities, health care workers and on the responsibilities of individuals themselves in relation to health and disease was presented to the jury by a number of experts, including a clinician, a GP, an epidemiologist, a pharmacologist, a psychologist and public health practitioners. In one session, issues relating to vascular disease and aspirin prophylaxis were explored through the testimonies of several patients and their carers.

Each session was preceded by a closed discussion in which the jurors, guided by the Facilitator, reflected on the evidence already received and prepared questions for the next expert witness and the jurors were encouraged to question the witnesses.

On the day following the final presentation, the jurors, the Facilitator and the Director met in a closed session to draft conclusions and recommendations. The recommendations were included in a report, which was drafted by the Director and circulated for amendment by the jurors and the Facilitator. Copies of the report were widely distributed and copies are available from the Director (ML).

Results

During their deliberations, the jurors identified a number of key issues, which they believed were of relevance to self-help and should be addressed by those responsible for public health policy.

The role of government

Beyond the current regulatory arrangements for new medicines, the jurors saw two principal duties for government in relation to the use of medicines as a way of maintaining health. First, a duty to ensure that people are well-informed in a balanced and effective manner about the potential risks and benefits. Although they were divided, most of the jurors felt that the public should be made aware of possible benefits from medicines used prophylactically. The example used—aspirin in the reduction of colon cancer and, possibly, in other cancers—generated a lot of discussion, with a minority of jurors concerned about raising false hopes in relation to unproven benefits.

The role of healthcare professionals

Most of the jurors felt that people should be encouraged to discuss risks and benefits with a healthcare professional before taking a preventive medicine. This would help ensure the identification of contra-indications to the medicine and would also help to ensure that people could take an informed decision. Most thought that the subject's own GP would be best placed to do this, having knowledge of the subject and access to his/her medical records, but there should be alternative sources of advice, including practice nurses and pharmacists. Almost all the jurors agreed that information, advice and, when appropriate, encouragement should be included on possible medical prophylactics when advice on healthcare is sought.

None of the jurors was aware of the patient-reporting element of the ‘Yellow Card’ scheme for the reporting of adverse drug reactions,11 and even some of the clinical witnesses were unaware that this included a patient-reporting element. The jurors were very supportive of the involvement of patients and urged that the scheme is widely advertised to patients.

Education and information for doctors

The jurors expressed concern at the apparent variation in knowledge and practice of doctors, particularly in relation to preventive medicines. There was also concern about the role of financial incentives within the general practice contract.

Presenting evidence on healthcare to the public

Statistics

The jurors expressed a great desire for more information on health issues and they showed an ability to understand even the most complex situations and data that were presented to them. However, the Jury recognised that statistics can easily confuse and sometimes mislead. Healthcare information should be presented to the public by an independent source (there was insufficient time to explore how such ‘independence’ would be defined) and should cover all sides of the case. They were insistent that risks and benefits should be presented in absolute rather than relative terms.

Lifestyle

The Jury was unanimous in its view that information on the risks and benefits of preventive medicines should always be set within the context of lifestyle changes relevant to the maintenance of health, such as smoking cessation, exercise and dietary changes. At the same time they recognised the difficulties experienced by the vast majority of people in changing behaviours!

The attractions and dangers of using medicines to maintain health

Dangers

The Jury was aware of possible dangers associated with the use of medicines to maintain health. On the one hand, the jurors readily understood the concept of ‘risk compensation’ and the use of medication such as low-dose aspirin to balance the continuing of unhealthy lifestyles. On the other hand, they appreciated how taking a tablet could lead healthy individuals to regard themselves as ‘patients’.

Attractions

The jurors readily accepted that healthy lifestyles and behaviours should be promoted in every way possible. However, they felt that most people would be much more likely to take medicines to maintain their health than they would be to make major changes to their lifestyle. Furthermore, for most people, the attractions of a medicine in maintaining health would outweigh the dangers.

Discussion

Planning the project, setting up a Steering Group, obtaining agreement by expert witnesses and arranging a meeting place all took just over a year. The jurors had been selected from within an area that had good transport to the meeting site, all attended each session and no difficulty arose with transport. The jurors worked with the Facilitator effectively as a team and we were aware of no tensions or difficulties. All who were involved in the project, and in particular the jurors (who kept diaries throughout, which were analysed afterwards), appeared to find the experience rewarding and enjoyable. In all, the direct costs of the project were around £20 000.

Key to the success of the process was sufficient time for the jurors to question witnesses and reflect on their evidence; good briefing of witnesses to ensure that they covered the relevant issues; and a facilitative style that encouraged robust examination and rigorous appraisal of the evidence. Jurors frequently had cause to change their views during the process, as new evidence illuminated different aspects of the issue.

In a challenging editorial, Kassirer12 states ‘…it (is) essential to identify decisions in which it is especially important to consider patients' values and to protect such decisions from intrusive external decision making’. The latter must surely include decisions relating to individual patients taken by clinicians, decisions taken by health authorities relating to people within their area of authority and decisions relevant to health care taken by government.

The jury system has limitations and the ability of a lay group of non-experts to judge complex issues has been questioned. Nevertheless, there is wide agreement (in the UK and many other countries) that matters of importance, including issues of life and death, are best judged by juries, and eight centuries after its introduction no better system appears to have been devised.

The first Citizens' Jury in the UK of the kind we describe was conducted in 1996.7 One of its main aims was an assessment of the value of using such an approach within the health field and it led to the conclusion that ‘given enough time and information, the public is willing and able to contribute to debates about… health care’. We endorse this as we found that the people we selected from the community to act as jurors became deeply involved in the topics being considered, all made worthwhile contributions to the discussions and, in the words of one of them, they became ‘experts’ in the various topics discussed.

Our jury was set up to examine issues relating to self-help in the maintenance of health and the potential role of prophylactic medicines. The jurors were quick to see the difference between the treatment of disease and the maintenance of health. They understood how responsibility for the first lies with the NHS with its complex hierarchy of trained workers. On the other hand, they appreciated that the maintenance of health is ultimately the responsibility of the individual, albeit within the context of a variety of legislative, fiscal and policy initiatives designed to make the healthy choice the easy choice. The jurors agreed that the role of health services and health practitioners in this context is limited to the supply of information, advice and, on occasions, encouragement. Within the context of the cost of health services, the government has strongly endorsed these points, for example in a recent speech by the Secretary of State for Health in England: ‘We want to free the system up – to create a framework which empowers people to make the changes that will really make a difference to the nation's lives’.13

Our jury stressed the need for government, healthcare bodies, health care practitioners, pharmacists and nurses to play an even more active role in advising and encouraging members of the public about the maintenance of health. The jurors challenged current orthodoxies in at least two areas. First, although there was not total agreement, a majority of the jurors were open to the benefits of medicines even for ‘healthy’ people and were insistent that the value of prophylactic medicines should be included in health care advice, which balances the benefits of drugs with the difficulties in changing life style and diet. Second, a majority of the jurors were keen to be presented with evidence of possible benefit even where there was no consensus among experts. For example, in the case study of aspirin and cancer, the jurors argued that people should be trusted with the present evidence on the possible protection by aspirin against bowel cancer. They argued further that estimates of risks and benefits should always be presented in ‘absolute’ rather than ‘relative’ terms. They believed that Wales' National Public Health Service is ideally placed and should be adequately resourced to take a lead in much of this.

Conclusions

The jury we describe readily understood the difference between ‘treatment’ and ‘prevention’ and agreed that more should be done to stress the responsibility of the individual for the latter. They saw a major role for the use of medicines in prevention but felt that more should be done to publicise the absolute risks and benefits of these even when there is disagreement between doctors and other experts.

A lively and reasoned interest was shown by all the jurors in the more complex issues to do with treatment and prophylaxis. The opinions of individuals are of unique value but only if they are informed. Therefore, we strongly recommend the use of Citizens' Juries and other methods to explore issues within health and social care.

The Wanless report14 stated that the NHS is unsustainable in its current form unless members of the public are ‘fully engaged’ and take responsibility for their own health. Therefore, we endorse the conclusion of Lenaghan et al7 and with them we urge that decision makers at a local and national level should take time and effort to obtain informed comment from groups representative of the general public, and should not only listen to but should act on the voice of the public. This is valuable as a strategy to ensure that those who purport to make decisions on behalf of lay citizens actually understand the nature of the relationship which citizens want with their health service.

What is already known

A lot is known about people's attitudes toward various self-care approaches to maintaining good health, but there is almost no published work on people's attitudes in the UK toward the use of medicines in this regard.

What does the paper add

  • This reports the first published results of a deliberative exercise in which people with no relevant diagnosed pre-existing medical condition have access to the best available evidence, and reflects on the advantages and disadvantages to them of using medicines to preserve good health.

  • The report also demonstrates that the strategy of a Citizens' Jury is acceptable to members of the general public and complex socio-medical issues can be understood leading to a range of views.

Acknowledgments

We are most grateful to the 11 members of the Steering Group, the 14 expert witnesses and the 16 jurors. The input of Ms Penny Roberts, Chief Reporter of BBC Wales, who acted as Facilator, was invaluable, and we are most grateful to her. The project was funded through an unrestricted educational grant from Pfizer Ltd.

References

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Footnotes

  • Linked articles 99952.

  • Funding Pfizer Ltd.

  • Competing interests None.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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