A variety of terms are used to describe people who get involved in cancer research in a 'non-professional' capacity, including consumers, service users, participants, volunteers and lay people. It is not that one term is right and others are wrong but different groups and individuals choose to identify themselves in different ways. We use the term 'patient and public involvement', which is consistent with other national clinical research organisations including NCRI, UKCRN and UKCRC.

We take 'patients and the public' to include the following:

• People affected by cancer, including patients, carers, and family members and friends
• Members of the public who may be targeted by clinical and health research programmes, for example smoking-related public health research
• Organisations that represent the interests of people affected by cancer
• Individuals and groups that are affected by health or clinical research issues

What is 'involvement'?

'Involvement' in this context does not mean 'involvement' as a research subject. It means involvement in actually planning or doing the research, i.e. involvement in the research process itself. This is sometimes referred to as 'active' involvement.

There are many ways in which patients and the public can get actively involved in COMPASS research, such as: -

• Involvement in setting the research agenda, at various levels
• Involvement in carrying out research
• Involvement in analysing research data or reporting on research findings
• Involvement in communicating research findings and getting them into practice.