User involvement in the provision of HIV services: some lessons learned from a user group in an HIV treatment centre in London

Abstract

In recent years attention has been focused on the greater participation of health service users in the identification of health service need, service design and delivery and service evaluation. This approach attempts to improve communication between health professionals and the health communities they serve in order to deliver more effective services. The establishment of user groups in HIV services has been one approach by which clinicians have attempted to establish ways that service users could help in the improvement of clinical services. This research article describes the process in the involvement of a user group in an east London HIV service. It describes the challenges that faced both the service users and the clinical staff and it analyses the factors that led to the discontinuation of the user group. The article discusses factors and challenges that must be addressed before meaningful user involvement in HIV services can be established.