This ethnographic study looks at user involvement in health service development. The results show that user involvement in the programme was initiated and led by professionals. Professionals determined the areas of service improvement service users could participate in. A wide range of activities were considered "user involvement," from patient satisfaction surveys to service users delivering peer support. Involvement tended to be most active in the least technical areas and areas with least input from clinicians. The gains of involvement were harder to identify in terms of impact on services. More evident were the personal gains for those involved: satisfaction of feeling listened to by professionals, social opportunities of meeting others in a similar situation, and increased knowledge about stroke and services available.

Personal gains are valid reasons for user involvement. It seems though that users need to be more in control of how and when they are involved. What are your thoughts?