Patient and public involvement in health care is important, but the existing definitions of the concept do not integrate the stakeholders' own perceptions.
To investigate and compare service users' and service providers' own definitions of patient and public involvement and their implications.
Qualitative study with mainly individual in-depth semi-structured interviews conducted between June 2007 and June 2009. Data were analysed using a grounded theory approach.
A total of 20 patients, 13 public representatives and 44 health service providers/managers in both somatic and mental health care were interviewed. A common definition of patient and public involvement emerged: It is founded on mutual respect, carried out through dialogue aiming at achieving shared decision making. Nevertheless, users and providers assigned different values to the core aspects: Respect was imperative for service users and implied for providers, dialogue was a way to gain respect for service users and to achieve good outcome for providers, and both worried that the other party wanted to make sole decisions.
Users and providers need to consider that although they have a common definition of involvement in health care, they assign different values to its aspects. Increasing and improving patient and public involvement therefore requires knowledge on and dialogue between the parties about these differences.
Experiences of patients and next of kin are to be given a central role in the development of health services. However, little is known about the amount and types of user involvement at the service level.
A questionnaire regarding user involvement was sent to all administrative units (i.e. one or more departments or clinics) in Central Norway Regional Health Authority (n = 63).
38/53 (72 %) administrative units reported that they had involved users in the development of their services in many different ways. There were standing user committees, user representatives in standing committees, users taking part in patient education, users who were employed by the unit, contact with user organisations and results from user surveys. Users involved in their own treatment plans and more informal contact with users were also reported as user involvement.
Health personnel reported a large variety of interactions with users. It is questionable whether all of these interactions can actually be defined as user involvement with a real impact on the development of health services at the level of hospital units.