NICE 2001/ 038
Issued: 22 November 2001

Press release

The Citizens Council will provide advice to the Institute on topics relating to social, ethical or moral questions which arise in the Institute's work. These questions could arise from a specific topic under appraisal, a clinical guideline under development or as the result of reflection on previous guidance, although the Council will not make clinical recommendations. It is planned that the Council will have up to 30 members who will be representative of the England and Wales population.

Andrew Dillon, Chief Executive of NICE said "This is a really exciting development for the Institute and the NHS. We expect this Council to provide NICE with advice that reflects the public's perspective on what are often challenging moral and ethical issues".

"No themes have yet been selected for the Committee. However as an example of what it might be asked to look at, an early topic is likely to be consideration of the value the Institute and its advisory committee should apply when interpreting clinical and economic evidence. We want the Council to be truly representative of the people who live in England and Wales and will work hard to ensure that the people on it include the right mix of men and women, and that they are representative of the age, social class and ethnic structure of the people in England and Wales".

"The Council will not include people who work in the NHS or in private medicine. Similarly those working in the Department of Health, the National Assembly for Wales health teams, the healthcare industries or in groups or organisations supporting patient or industry groups, for example lobbying organisations, will also be excluded"

-Ends-

Notes for Editors:

1. The National Plan for the NHS proposed that the National Institute for Clinical Excellence should establish a Citizens Council. The Institute's Board discussed proposals for the operating of this council at its public Board meeting on 21 November 2001. It is expected that the Council will meet for the first time in 2002
   
2. Membership of the Council
   
  It is envisaged that the Council will have up to 30 members. As far as possible, the Institute will apply Nolan Principles to the recruitment of members of the Council, but it is considered that their strict application would not result in a membership with the necessary characteristics to allow it to function properly. These characteristics include:
   
 
  • representative of the England and Wales population in the mix of: men and women, social class, ethnicity, and age.
  • no members working in the NHS or in private medicine, the healthcare industries, in groups or organisations whose function is to act in support of patient or industry groups or to lobby on their behalf, or in the Department of Health or the health related elements of the National Assembly for Wales;
  • ability to devote sufficient time to attend Council meetings
  • The current plan is for members to be appointed for three years. On the basis of two meetings per year each member would serve for a total of 6 meetings.
3. Recruitment of council
   
  In order to ensure that the Council reflects the characteristics above, the Institute intends to follow these steps in recruiting to it:
   
 
  • use of the media to raise awareness of the Council's formation.
  • advertisements in local and national media;
  • outreach selection from the electoral register;
  • creation of a pool of potential members;
  • selection from the pool, against predetermined criteria, by an agency appointed by the Institute;
4. Process for selecting topics
   
  The Council will act in an advisory capacity to the Institute. Proposals for issues to be considered by the Council will be generated within the Institute by a Board committee, on advice from Institute staff and as a result of suggestions from Ministers. Exceptionally, topics may emerge during the scoping stages in the technology appraisal and clinical guidelines programmes. This is the stage at which the question (in the case of the technology appraisal programme) and the nature and extent of the clinical practice to be covered (in the case of clinical guidelines) are being established. Proposals may also be generated by the Institute's Research and Development Committee (a sub committee of the Board) or by the Board itself. The Board Committee will consist of the Chairman, Chief Executive, Clinical Director and two non-executive directors. This committee will meet with sufficient frequency to ensure that the Council's capacity is fully utilised.
   
  Topics will normally be general in nature, relating to social, ethical or moral questions. Such questions could arise from a specific topic or as a result of reflection on the experience of a series of topics that have previously been the subject of guidance.
   
5. Meetings of the Council
   
  It is envisaged that the Council will meet biannually. More frequent meetings will present difficulties for Council members, taking into account the commitment that they will be expected to make. In addition, the nature and extent of the research and preparation necessary in advance of each event means that more frequent meetings would be very expensive. The meetings are likely to last for three days. Each meeting will be preceded by appropriate research into the topic, including, where required, market research. Expert witnesses, who may be selected by the Council itself, would inform its deliberations as part of the evidence or information available to it. The meetings will be facilitated and deliberative in style. They will be held under the general direction of the Chairman of the Institute.
   
  The meetings will be held in public and the advice given to the Institute at the end of each meeting will be published. Further thought needs to be given to how the public might have access to the meeting using a format which will leave Council members feeling comfortable and unconstrained. It is possible that some or all of the meetings might be televised.
   
  The date of each meeting and its agenda will be publicised in advance. Further thought needs to be given as to what value there might be in encouraging submissions from individuals and how the Committee might use them.
   
6. How the advice will be taken into account by NICE
   
  The outcome of each meeting will be considered by the same Board committee which referred the topic. The committee will establish that:
   
 
  • the Council has properly addressed the issue referred to it;
  • the advice has been formulated in such a way as to be capable of being used by the Institute.
  The Chief Executive will be responsible for disseminating the Council's advice within the Institute. The Board will be responsible for informing the Council of its response to its advice. The Institute will publish the advice through a report to the Board and by an announcement on the Institute's website.
   
7. Evaluation of the Council
   
  Each meeting of the Council will be evaluated by an independent body. The evaluation will include:
   
 
  • an assessment of the extent to which the group was able to successfully address the topic it considered;
  • identification of any particular methodological challenges faced by the Council and how they were resolved (or not);
  • consideration of whether, in the light of experience, the topic was suitable for the council;
  • recommendations for better or more efficient organisation of the meeting.
  The evaluation may involve focus groups or members of the wider pool of potential Council members, to test the Council's advice. The evaluation will be received by the Board committee as part of its consideration of the results of the Council meeting.
   
8 Organisation and preparation for meetings
   
  The organisation of the meetings and the preparatory work necessary will be contracted to an external organisation. This organisation will be expected to formulate a specification for each meeting in conjunction with the Institute. This specification will include:
   
 
  • the formulation of the questions which the Council will be asked to address;
  • consideration and commissioning of any market research required in advance of the meeting;
  • briefing of suitable expert witnesses;
  • briefing Council members;
  • organisation of the facilities for the meeting;
  • arrangements for handling the media;
  • the preparation of a record of the meetings
  • preparation of a report to the Institute