Involving patients and the public

Involving patients, service users, carers and their representatives in guideline development

Patient involvement is “the appropriate, active participation of patients, carers and patient representatives as partners in their own care and in the planning, monitoring and development of health services”.

People with lived experience of conditions (patients, service users and carers), and people representing them (representatives or advocates) may have different perspectives on healthcare processes, priorities, and outcomes from those of health professionals. We involve people with lived experience and their representatives to ensure that the guideline addresses issues that matter to them and that their perspectives are reflected in the guideline.

People with lived experience can identify issues that may be overlooked by health professionals. They can highlight areas where the perspective of people with lived experience differs from the views of health professionals, and can ensure that the guideline addresses key issues of concern to people with lived experience.

Identifying the views of people with lived experience

We identify the views of people with lived experience by:

• searching for published studies that reflect experiences and preferences of people with lived experience in relation to the guideline topic
• asking organisations and charities to comment on issues they think guidelines should address
• asking for direct feedback from people with lived experience.

The information obtained from these approaches is fed back to guideline groups to influence the key questions underpinning the guideline.