2002/68 NICE Citizens Council issues first 'common sense' health report

NICE: 2002/068
Issued: 20 December 2002

PRESS RELEASE

NICE Citizens Council issues first 'common sense' health report

The first report of the Citizens Council of the National Institute for Clinical Excellence (NICE), is published today. The Council considered the question: 'What should NICE take into account when making decisions about clinical need?'In particular, they focussed on:

• What are the most important features of diseases or conditions that should be considered when determining clinical need - for example, effect of the disease/condition on life expectancy and/or quality of life?
• Are there additional factors relating to individual patients that should be considered, such as family responsibilities and individual choice?
• What weight does the Council think NICE should give to the views of groups representing patients and carers, healthcare professionals and other stakeholders when considering issues of clinical need?
  

In the Council's opinion the following - in no specific order - are the MOST IMPORTANT FEATURES OF DISEASES, OR CONDITIONS, that should be taken into account when deciding clinical need:

• How bad is the pain and how severe are the symptoms?
• Is it potentially fatal?
• Is it contagious?
• Are there no alternative treatments available?
• What is the long-term effect of the condition on the individual?
• What are the chances of good clinical outcome?
• What is the number of patients affected?
• What is the effect of the disease on the quality of life for the individual patient?
• What is the effect of the disease on the length of life for the individual?
• What are the psychological effects of the condition?
• What is the level of disability and/or independence of the individual?
• Is the condition time limited?
• Are there fluctuations in the individual's condition?
• Is the disease or the condition cosmetic?
• What are the side-effects encountered by the patient?
• Is there any stigma related to the condition?
• What are the resources available, such as cost and equipment?
  

In the Council's opinion the following - in no specific order - are the most important FEATURES OF PATIENTS, RATHER THAN THEIR CONDITION, that should be taken into account when deciding clinical need:

• What values does the patient have?
• What is the patient's ability to make an informed decision?
• What is the age of the patient?
• How fit is the patient to undergo treatment?
• What are the patient's other conditions?
• How able is the patient to self-manage their condition?
• What is the family history, and are there any genetic or hereditary issues for the patient?
• Has a holistic approach for the patient been considered?
  

In the Council's opinion the following are features that SHOULD NOT BE CONSIDERED in determining clinical need:

• Social and economic factors
• Whether it is a 'self-induced' disease or condition
• How loud the 'voice' of the patient is
• Citizens Council members felt there should be no discrimination in determining clinical need, on grounds such as ethnic background, sex, or location.

In the report they expand on each of these points, for example:

Is the condition time limited?
The Citizens Council members felt that NICE should consider whether or not the illness is chronic (persists over a long period of time), or whether it is likely to be an inherently time-limited condition. Higher priority should be given to the former.

Is the disease or the condition cosmetic?
The Citizens Council members felt that if a condition was solely cosmetic then it should receive less of a priority when considering clinical need. However, they felt that some seemingly cosmetic conditions may have an adverse effect on the patient's mental health and emotional well-being, and in such cases this should be taken into account.

'Self-induced' diseases or conditions
The Citizens Council unanimously decided that NICE should not consider whether a disease or a condition was 'self-induced' to be a factor at all. In their view, this should make no difference. This was partly because the Citizens Council members appreciated the difficulty in assessing and untangling all the factors that would help decide whether or not a condition really was self-inflicted. It also reflected their view that this aspect of 'deservedness' should not be a factor in determining clinical need.

Commenting on the report, Council member Bob Osborne, a retired airline pilot from Horsham, West Sussex, said: "We realise that the NHS has professionals who are more than qualified to make decisions on clinical need, what is sometimes missing is a commonsense viewpoint that the public can relate to. We hope our report will help to put that viewpoint at the heart of NICE's decision-making."

Council member Sunita Nanda, a local government officer from Middlesex, said: "It was an extremely empowering experience for me and the others on the Council. We all brought a lot of personal experiences with us to the deliberations. We also had a lot of information to disseminate and digest within the three days to arrive at our conclusions. However, none of the members of the Council had prior knowledge of the chosen topic, so we came with no preconceived ideas! The process was tough, but extremely satisfying. I feel that the group worked well together and had a genuine opportunity to look at the issues unencumbered by pressure from outside."

Council member Peter Thomas, a teacher from Rhondda, Wales, said: "Clinical need isn't just about medical knowledge, it's about real people and their health. The priority has to be for health professionals to recognise patients as people with lives outside of their conditions. Decisions should not be made purely on the old adage 'doctor knows best', but through working partnerships between the patient and clinicians."

Professor Sir Michael Rawlins, Chairman of NICE said: "I very much welcome this first report from the Citizens Council. NICE already has the best clinical and scientific experts we can find to give us advice, and we make sure that patients have their say in our work too. This report brings the voice of the public to the debate on what NICE should take into account when making decisions about clinical need. I would like to take this opportunity to thank the Citizens Council for the time, thought and effort they have put into producing their report.

"It is immediately clear that we will have a lot to discuss at our meeting in January. In particular the Council have highlighted some issues about which we have been genuinely uncertain and other issues, such as consideration of age and inherited diseases, which warrant a more detailed investigation by the Council at a future date."

The report will be considered by the NICE Board at their next public meeting (Wednesday 15 January 2003 in Lancaster). Following this meeting NICE will issue a formal response setting out the Board's reaction to the recommendations contained in the report. Their response will be published on the NICE website alongside the Council's report, and will make clear how the recommendations made will inform the Institute's work and that of the independent groups and committees who advise it.

The report is published on the NICE website and will be used to inform the Institute's work, and the work of the independent groups and experts who develop NICE guidelines and appraisals for the NHS in England and Wales.

Ends

Notes for editors