When we're developing our guidance, we invite people with experience of a particular condition to share their views. This helps us understand the impact of their condition on their lives, and those of their families and carers.
On most occasions voluntary and community sector organisations identify people known to them who can help us.
If you're invited to take part you might be asked to share your views in writing, or come to one of our committee meetings to share your views in person.
Sharing your views in writing
All experts, whether professionals or people who use services, are asked to provide a personal statement. This is to give the committee information about your views and experience of the condition or therapy in discussion. It also enables the committee to focus their questions and identify key issues, important to people who use services and carers, to discuss in the meeting.
Personal statements are produced using a template which we will email to you (statements are published on our website).
Coming to a committee meeting
In preparation for the meeting, consider the following:
- The background and your experience of the condition and treatment in discussion.
- The impact the condition has had on your life (your home life, social life and your ability to work).
- Significant events, such as when treatment started and completed, the start of adverse or beneficial effects, and changes in quality of life. In the meeting, you should be factual and precise – for example, if you experienced pain, think about how severe it was and how long it lasted.
- In your view, the benefits and downsides of the treatment or care NICE is considering. For instance, how it compares with other therapies you have had.
- Any difference (if any) the treatment or care has made to you and any impact if the treatment or care was not available.
- Whether you would like to request a closed (private) session to discuss any sensitive information. Please contact your adviser at the earliest opportunity if this would be helpful.
Read our hints and tips when preparing to be a patient expert (PDF) for more information on taking part in our work.
At the meeting
Committee meetings follow a relatively formal process and are open to public observers. There can be more than 40 people present. On average approximately 25 people are taking part.
If you are asked about personal or sensitive matters in the meeting which you do not want to discuss in public, you may ask the chair for discussion to take place in private.
Conflicts of interest
All people taking part are asked to make any declarations of interest. This is where everyone is asked to say if they have any personal or professional involvement with a company that might affect their objectivity. Unless you have received payments from, or own shares in, the company whose products are being discussed, or a company whose products are being used as a comparison, you can simply answer ‘none’.
Questions you may be asked
There will be a summary of the main issues for discussion. The chair and committee members will seek clarification of the issues from the experts.
Questions will be directed at all the experts rather than at you individually, although it is likely that some of the questions will be put to you specifically. Questions will typically be about your experience of the condition and treatments.
You are encouraged to raise issues yourself to participate fully in the discussion.
When the chair is satisfied that they have asked all the relevant questions, you may be asked to make a closing comment. You do not have to make a closing statement if you do not want to. The statement is an opportunity to highlight any important points and to add any information you think has been missed.
What happens after the meeting?
After the meeting we will contact you to let you know next steps and the outcome of the discussion.
Some tips for the meeting
- your primary role is to ensure the patient’s experience is explained so it can be taken into account
- give a balanced view – evidence is most effective if you talk about both the good and the bad aspects
- be proactive in answering questions and in raising issues that you think are important
- if you have a comment or want to ask a question, make it clear by raising your arm
- when speaking, switch your desk microphone on and talk into it, as it will help everybody hear what you're saying
- even though an organisation has nominated you, you are at the meeting to give your views as an individual.