Patient and public involvement policy

NICE is committed to:

• Producing clinical guidance for the NHS that is patient-centred
• Producing public health guidance that has the public's needs as its focus
• Providing opportunities for patients, carers and the public to contribute - alongside health professionals and industry (companies producing drugs, medical devices and diagnostic equipment) - to the collection of evidence that informs our guidance
• Involving patients, carers and the public in NICE decision-making
• Supporting patients, carers and the public who contribute to the production of NICE guidance
• Producing NICE guidance in versions written specifically for patients, carers and the public
• Working with patients, carers, patient organisations and the media to publicise our recommendations - to help people access the treatment they are entitled to
• Reviewing the processes and methods used to involve patients, carers and the public in NICE's work.

There are a range of opportunities for patients, carers and members of the public to get involved with the work NICE does. These opportunities exist across all the NICE work programmes and associated advisory committees. Their work is described through the links below:

• Technology Appraisals
• Clinical Guidelines
• Interventional Procedures
• Public Health Interventions
• Public Health Programmes
• Research And Development Programme
• Implementation Programme

Different opportunities exist for patients, carers and the public to

• Influence how NICE does its work (mechanisms for involvement include consultation, and membership of the Citizens Council and the Partners Council)
• Contribute to the development of NICE guidance (mechanisms for involvement include consultation, membership of or attendance at NICE advisory bodies, participation in projects to collect information on patient views and experiences)
• Support the dissemination and implementation of NICE guidance (involving collaboration with patient and community organisations and statutory patient and public involvement structures such as the Local Involvement Networks (LINks)).

There are three main ways in which patients, carers and the public can influence the processes used by NICE in its work:

• Consultation: When NICE is asked to carry out new initiatives, it consults widely on the methods and processes it intends to use. In addition to providing opportunities for people to comment on draft process documents via the website, we often hold workshops to allow for more interactive input. Sometimes these are organised for people from a range of different interests (including patients, carers and members of the public). At other times we arrange meetings specifically for groups that represent lay interests, for example patient and carer organisations, voluntary and non-governmental organisations. Organisations interested in providing input from a patient, carer or public perspective to any new NICE initiatives should contact the NICE Patient and Public Involvement Programme. (see section 4.1).
• The Citizens Council: The Citizens Council bring s the views of the public to NICE decision-making. The 30 members of the Citizens Council, drawn from all walks of life and reflecting the make up of the population in England and Wales, give their views on the social values which should underpin NICE 's work. The Council meets twice a year and provides advice in response to a specific question of importance to NICE.
• The Partners Council:Individuals nominated by groups representing patient and public interests, health professional bodies, academic institutions, NHS management, healthcare quality organisations, industry (companies producing drugs, devices and diagnostic equipment) and trade unions sit on the Partners Council to provide NICE with the views of a range of organisations that have an interest in our work.

Registration provides the opportunity to:

• comment on scoping documents (documents that describe what a piece of guidance will and will not cover)
• submit evidence that might inform the guidance development process (for example, patient organisation surveys of patient views)
• identify individual patients or carers who can contribute more directly to different guidance development processes (see next section)
• comment on draft reports, documents and recommendations to influence the final guidance issued by NICE.

• Individuals can apply for membership of NICE committees and working groups. NICE committees and working groups are expected to include at least two members who play a crucial role by providing a patient/carer/public perspective to the discussions and decisions taken by these groups. They may be individuals with no links to a specific group or they may be members of patient and carer organisations, voluntary and non-governmental organisations and/or other groups that represent lay interests. Vacancies are publicised via national patient and carer organisations, on the NICE website, and sometimes in the national press
• Individuals may also be invited to attend meetings of NICE advisory bodies as patient, carer or community experts
• From time to time, groups producing NICE guidance collect information on patient views and experiences using interviews, focus groups, workshops and surveys. Details of forthcoming projects, or projects in progress, are available from the NICE Patient and Public Involvement Programme. (see section 4.1)
• All NICE guidance (technology appraisals, clinical guidelines, public health interventions, public health programmes and interventional procedures) is produced in stages, with opportunities for people to comment on preliminary drafts before decisions are made about the content of the final versions. Draft documents available for public consultation are posted on the NICE website for people to give their views. Any members of the public can comment on our draft guidance.

• The Patient and Public Involvement Programme (PPIP): A dedicated team within NICE develops and supports opportunities for patient, carer and public involvement. The PPIP:
  • provides advice on developing and supporting opportunities for patient, carer and public involvement - to NICE and the organisations and groups it commissions to develop its guidance
  • identifies organisations that represent patient, carer or public interests that may have an interest in specific guidance topics on NICE's work programme
  • runs workshops for organisations that represent patient, carer or public interests that want to know more about how NICE guidance is produced and how to contribute to its development
  • provides information, training and support to individual patients, carers and members of the public who are interested in or do contribute directly to NICE work. Support ranges from informal telephone advice to formal training workshops
  • from time to time, works directly with service users, patients, carers and the public to ensure that their views and experiences inform the development of NICE guidance
  • comments from a lay perspective on draft guidance issued by NICE
  • evaluates patient/carer/public involvement in NICE activities.

NICE recognises that patient, carer and public involvement is developmental. We intend to build on our existing work and develop new opportunities in the following ways:

• Achieve greater consistency and continual improvement in the degree to which patients, carers and the public are involved in the development of NICE processes and the production of guidance
• Consider how to fully take account the views of a diverse community by reflecting their needs and perspectives in the guidance itself, and in reaching them with our guidance
• Develop better methods for collecting information on patient views and experiences to inform the technology appraisal process
• Support opportunities for patient, carer and public involvement in NICE's implementation programme
• Share lessons learned from involving patients, carers and the public across different parts of NICE's work programme
• Develop opportunities for patient, carer and public involvement in new initiatives across the full range of NICE's responsibilities, in public health and clinical practice
• Review the format and content of our written information to improve the extent to which it meets the needs of patients, carers and the public
• Develop processes and methods to evaluate the successes and limitations of patient, carer and public involvement work at NICE.