Are the views of members of mental health user groups representative of those of 'ordinary' patients? A cross-sectional survey of service users and providers

Abstract

Background: The lack of representativeness of service users who participate in user involvement initiatives has been cited as a major obstacle to efforts to develop patient-centred mental health services. Aims: To examine whether the views of active members of a local user group reflect those of "ordinary" patients in contact with mental health services and to compare their views with those of other local stakeholders. Method: A cross-sectional survey in which participants were asked to rate the importance of different priorities for service development. Participants comprised 90 patients randomly selected from among those currently using mental health services, 10 members of the local mental health user group, 30 local service managers, 9 consultant psychiatrists and members of the local Trust Board. Results: The views of members of the mental health user group were similar to those of the randomly selected sample of patients. All four items rated as priorities by a random sample of patients were also rated priorities by members of the group and the two items rated as low priorities by patients were the two lowest priorities of user group members. User group members tended to rate all options as being of greater priority (mean rating = 3.3) than the random sample of patients (mean rating = 2.9, F = 9.7, p = .02). Conclusions: While caution needs to be exercised before making assumptions about the generalizability of views of members of user groups, these results challenge the view that members of user groups differ from those of "ordinary" patients. Declaration of interest: None.

• Mental health
• user groups
• patient forums
• representation
• consumer participation