User involvement in research: A route map
Definitions
We have used the term ‘service user’ to describe people who use (wish to use or have used) health and/or social care services as well as family members, partners or friends who have some responsibility for caring for someone who uses health or social care services. We do not mean all users of an organisation’s services, as this may include, for example, health professionals. Some organisations prefer the terms ‘patient’, ‘user’, ‘public’ or ‘person’ and often distinguish service users from carers.
When we talk about service user involvement, we mean the active involvement of service users, not their passive involvement as recipients of services or information. Involving is often described as doing things with or by people, rather than for or to them.
‘Involvement’ covers a range of activities, from consulting service users abut their views or wishes, through to working in partnership with them to develop projects or services, right up to service users leading projects, services or organisations.
