NICE 2002/048
Issued: 24 September 2002

Press Release

Outstanding public response to join NICE's Citizens Council


The quest for recruits to join the UK's first Citizens Council to help influence the decision-making of the National Institute for Clinical Excellence has resulted in an unprecedented response from members of the public applying to be considered.

In a recruitment campaign that lasted just one month thousands of people contacted NICE to find out more about the Council. This resulted in over 30,000 recruitment packs being either sent out, completed over the telephone, or downloaded from NICE's web site.

Vision 21, the independent company appointed to recruit members and run the Council meetings, has started to consider the 4,401 applications that they received by the closing date. Vision 21 will be selecting 30 people from England and Wales and are aiming to complete the recruitment process during the first week of November. The names of the Councillors will be announced shortly after.

Ruth Turner of Vision 21 said: "We were expecting a great deal of interest in this project and the public have not let us down. We now start the careful process of scrutinising all the applications. We will be selecting on the basis of strict criteria to ensure that final make-up of the Council reflects the diversity of the population in England and Wales."

Commenting on the outstanding response, Chairman of NICE, Professor Sir Michael Rawlins said:
"NICE is at the heart of NHS decision making and the decisions we make touch peoples lives. The response to this recruitment campaign demonstrates the desire that the public have to get directly involved in decision-making in the NHS. I think the public agree with me that this is an exciting development and I expect this Council will provide NICE with advice that reflects the public's perspective on what are often challenging issues."

Andrew Dillon, Chief Executive of NICE added:
"NICE has always included the patients' voice in its decision-making, but now it is set to have an added dimension - the voice of the general public".

"With such a huge response, there are bound to be many excellent candidates who met all the criteria, but who will not be selected. We do not want to lose the enthusiasm and interest of those applicants and we will be examining ways in which NICE can harness that interest in the future. In the meantime, there are plans to establish patients' forums for every NHS hospital trust and in primary care by Spring next year. Many of the applicants who were not selected to serve on the NICE Citizens council might make ideal candidates for these new bodies and I would certainly encourage them to apply as places are advertised locally".

Ends

Notes for editors

The Citizens Council is an innovation to reflect public opinion in the guidance that NICE publishes about the clinical and cost effectiveness of treatments and care for the NHS. Challenging value questions will be addressed by a 30 strong group of men and women drawn from all walks of life.

NICE has prepared, for the public, the answers to some common questions and answers on the Citizens Council. These are available from NICE and its web site. Large print versions are also available. The questions and answers are provided below for your reference.

Some questions and answers about NICE's Citizens Council

1. What is the Citizens Council?

The Citizens Council will help NICE find out what members of the public think about key issues informing the development of the guidance NICE issues on the treatments and care that people can expect in the NHS.
We know that although the guidance we issue about the treatment and care that should be used within the NHS is based on evidence there are key values and judgments on which are decisions are made. We want representatives of the public from all parts of the community to give their views and opinions and provide a backdrop against which we, and the independent Committees that advise us, can produce our guidance.
We already have the experts to provide the technical input and we are now creating an opportunity for a 30-strong group of people, drawn from all groups in the population, to have their say. This will be the Citizens Council.
Council members will be from all age groups, social circumstances, ethnic background and ability, forming a cross-section of opinion. They will be paid (£150 a day when on Council business), meet twice a year in 3-day sessions, and deliberate on questions put to them by the Board of NICE. Their meetings will be open to the public.

2. Why does NICE want a Citizens Council?

Establishing the Council is:

  • First, the fulfilment of a principle established in the NHS Modernisation Plan and a long-term aim of NICE, to involve the wider public in its work
  • Second, as a response to the Kennedy report following the Bristol baby deaths, which recommended more public involvement in making NHS decisions
  • And third, to provide a backdrop of public opinion against which NICE and the independent groups that advise it can make their recommendations.

3. What will the Council do?

As a sub-committee of the NICE Board, it will develop questions that concern the judgments that surround the work of NICE. The Council will consider the questions and make a report to NICE. NICE will then use these opinions to inform its work and the work of the independent groups and experts who develop NICE guidelines and appraisals for the NHS.

4. What are the values Council members will bring?

We want to put a rationale behind the use of resources. In doing so we want to know what ordinary people, who are using, have used or most certainly will use the NHS, think about key parts of the way our decisions are made. In developing their opinions they will bring parts of themselves and their backgrounds to the table - these are their values.

5. Are there some examples of how the Citizens Council might be useful?

NICE deals with some challenging issues. Here are three examples.

  • We were asked to look at where the products that help people stop smoking might add value to the NHS and patients - we recommended that these products should be available only to people who have demonstrated a real willingness to give up smoking.

  • Similarly we were asked to look at where the new anti obesity products could add value to the NHS and patients. We recommended that these drugs should be available only to people who were classed as clinically obese and who had already demonstrated they could lose weight by their own efforts.

  • During an appraisal, we didn't feel comfortable that we had enough evidence to make a blanket recommendation for a particular drug. And so we said that it should, effectively, be used in a nationwide clinical trial to get more evidence, and that the Department of Health should negotiate a more cost-effective deal with the manufacturers.

We think we got those decisions about right and that the wider public would agree with us. However, as technology advances, some decisions can only get more difficult - for example, decisions about the care people in the NHS can expect; decisions about some new treatments referred to by the press as 'lifestyle' products; or decisions about very expensive drugs that may help someone who is very ill to live just a few weeks longer.

The Citizens Council will:

  • keep us in touch with public opinion
  • tell us their views on issues that could challenge the independent groups that advise us
  • provide a perspective on technical issues such as the levels of evidence we should consider
  • and be there to give us non-technical common-sense advice.

6. What kind of people will sit on the Citizens Council?

The Citizens Council will be made up of 30 members of the public drawn from a different range of backgrounds and coming from all parts of England and Wales.

7. Who won't be on the Council?

Because groups such as NHS employees, suppliers to the NHS, or patient groups already have a strong voice in making their opinions known in the decisions NICE makes, we would decline applications from anyone in those groups. In addition we would decline applications from those who work in lobbying organisations. We are anxious to give a voice to people who normally find it difficult to have their opinions heard.

8. How will Council members be chosen?

The recruitment of Council members is being carried out at arm's length from NICE by Vision 21 -an independent specialist company. Vision 21 will identify people on the basis of the likelihood that they will be able to make a contribution, rather than on their track record of being involved in similar bodies. Council members will have responded to advertisements and widespread publicity.

9. What kind of background is needed to be a Council member?

The selection process is designed to ensure that as wide a cross-section of society as possible is included. It is not necessary for applicants to have had experience of sitting on committees. Selection will be on the basis of a person's potential - regardless of their background or circumstances. The only people prevented from being Council members are those with a connection with the NHS or other groups and companies working within health.

10. How much time will be involved?

Once selected, Council members will be asked to attend an introductory meeting lasting up to 2 days. This is designed to allow them to meet other Council members and to let them know what to expect when taking part in a Council meeting. The Council will then meet twice a year and each meeting will last up to 3 days.

11. What other support will be available?

The Citizens Council organisers will make every effort to provide support to Councillors who need it. For example, when necessary, crèche facilities will be provided for young children of Council members or carers will be arranged for dependants of Councillors. All the venues selected for the Council meetings will have disabled access and hearing loops. Support staff will be on hand throughout meetings to explain things when necessary.

12. Will Councillors get paid?

Yes, they will be paid £150 per day when on Council business and all their travelling and accommodation expenses will be taken care of. Where special facilities need to be provided, such as a crèche or a signer, NICE will pay.

13. Why pay the Council Members?

Each member of the Council will receive £150 per day when on Council business and we will pay all travel and overnight expenses too. We will also provide special facilities such as crèches for young children of Council members. Naturally we will pay the costs of the places we use to hold the meetings and pay the travelling expenses of the expert witnesses. We are also paying the expert organisation to run the meetings. NICE will not be involved in the meetings.
Without making these payments:

  • how else could we balance the Council with an opinion from a single mum on a Council estate, if not by paying expenses and providing childcare?
  • how else could we include a self-employed person if we were not to offer a fee for their time?
  • how else could we be sure that geography plays no part in preventing people from taking part if we are not prepared to meet travel and accommodation costs?

14. How long will members serve on the Council?

Appointments will be for up to 3 years only. Some people will serve for a year, some for 2 years and some for 3 years.

15. Who decides what topics come before the Council?

A special sub-committee of NICE's Board, in consultation with the rest of NICE, will decide the questions to be put to the Citizens Council.

16. How will meetings be run?

An independent organisation, Vision 21, will run the meetings and produce reports summarising the Council 's views, which will be sent to NICE. Expert witnesses will give evidence on the issues under consideration and Council members will be able to ask them questions. There are likely to be sessions where Council members are asked to form smaller groups and consider particular topics - with the support of Vision 21 staff.

17. Who else might be at the meetings?

All Council meetings will be open to members of the public and to the press and the media, and so anyone from these groups might attend.

18. What powers does the Council have?

The Council's advice will be used to help NICE and the independent Committees that advise it to consider their judgments in in the light of the views of representatives of the general public. NICE is not bound by the Council's advice but it is committed to this type of input - otherwise it wouldn't have.