“I found the whole process outstanding. In particular the support processes especially with the check-ins from the team and of particular note the Chair of the group was brilliant… ”
“As a lay member I appreciated the helpful responses of the medically qualified people who took the trouble to answer questions in detail and to explain the terminology and the nature of the surgical procedures.“
“I greatly valued your training sessions for lay advisers and would have liked more. I thought that the support offered by my ‘PPI’ handler at NICE was pitched at exactly the right level…. with some brilliantly produced back up documentation for lay advisers…“
“… I’ve felt empowered being able to shape care for a disease that will affect me for the rest of my life.”
Patient/public members of NICE guideline development groups
This chapter provides guideline developers with advice on how to identify, recruit and support patients and members of the public as participants in guideline development groups. It will also explore how facilitators can overcome some of the main barriers to recruitment and effective involvement. Published literature has highlighted several barriers for involving patient and public members (Armstrong et al. 2017b; Légaré et al. 2011; Ocloo and Matthews 2016), including:
The 4 sections of this chapter will address these barriers. The first section focuses on the role of patient and public members, including the qualities, experience, type and number, and skills needed. The second section focuses on the recruitment process and strategies. Support, including practical and informal support, group dynamics, training and co-learning, and re-assessment and feedback procedures, is addressed in the third section. The fourth section focuses specifically on the barriers and solutions to recruiting people who might face barriers to participating, such as children, and outlines a series of alternative approaches. Practical examples will be provided, based largely on the expertise and best practice of guideline developers from around the world, These include the National Institute for Health and Care Excellence (NICE) in England, Ärztliches Zentrum für Qualität in der Medizin (ÄZQ) in Germany (or the German Agency for Quality in Medicine [AEZQ]), the Registered Nurses’ Association of Ontario (RNAO) in Canada, and the Scottish Intercollegiate Guideline Network (SIGN) in Scotland. Reference is made to published research where relevant. The advice in this chapter will help guideline developers avoid tokenism, defined as the ‘difference between…the empty ritual of participation and having the real power needed to affect the outcome’ (Arnstein 1969).
We use the phrase ‘lay member’ to refer to a member of one of our committees who has personal experience of using health or care services. The phrase can also mean someone from a community affected by the committee’s topic area or an advocate or unpaid carer.
The committee will look at the evidence that is available, and develop NICE guidance on Thyroid cancer: assessment and management. The NICE guidance will be written recommendations about the best types of treatment, support and services.
For more information about our committees and what they do, visit the committee area of our website.
We’re looking for people with an understanding of Thyroid cancer: assessment and management and the issues important to patients, people using services, unpaid carers, communities and the public.
As a lay member, you will have this understanding:
You will also have:
NICE committees develop our guidance. As well as lay members, committees are also made up of professional members. This includes people who work in health or social care, as well as a range of other roles.
Lay members have the same status and carry out the same functions as other committee members.
It’s important that you are available for the committee’s meetings.
A named member of the public involvement team will be available throughout your time working with us, to offer help and support.
You will be offered training and guidance to make sure you feel confident on the committee, as well as regular chats with your named contact.
If you have any special requirements, for example access or travel needs, we can discuss this with you and make adjustments where needed.
The public involvement team passes on applications to the team running this committee. Your application is then shortlisted against the required skills and abilities set out in this document.
If you are shortlisted you will be contacted for a phone interview to talk about the position, your application and what is involved before a formal invitation is offered to sit on the committee. The date for interviews has been set for the 14 and 17 February 2020. They will take place on the phone and will last no more than 30 minutes.
For more information about becoming a member on this committee, read our additional information.
This gives more information about: