User involvement in UK cancer services: bridging the policy gap

Abstract

Recent UK government initiatives aim to increase user involvement in the National Health Service (NHS) in two ways: by encouraging service users to take an active role in making decisions about their own care; and by establishing opportunities for wider public participation in service development. The purpose of this study was to examine how UK cancer service users understand and relate to the concept of user involvement. The data were collected through in-depth interviews, which were analysed for content according to the principles of grounded theory. The results highlight the role of information and communication in effective user involvement. Perhaps more importantly, this study suggests that the concept of user involvement is unclear to many cancer service users. This paper argues the need for increased awareness and understanding of what user involvement is and how it can work.

From rhetoric to reality: including patient voices in supportive cancer care planning

“…Our results reinforce findings from a succession of public participation studies that have documented failed attempts at incorporating public and patient involvement in health planning, even when there appears to be a general policy mandate to do so 5–7,16–20,20–23,45,46 . However, they point to different underlying reasons for the failure than have been exposed in previous studies.…”

Palliative care in public health: a formal and content-related analysis of European journals

“…Improving the position of patients within the health system is a vital aspiration in many countries with comparable high health care standards (Schoen et al 2005;Evans et al 2003;Crawford et al 2002). The self-conception of palliative care is notably patient centred to meet the complex demands of the patients and their families (World Health Organization 2006).…”

From awareness to involvement? A qualitative study of respiratory patients’ awareness of health service change

“…Although studies have explored the potential benefits of patient and public involvement in improving service design and shaping priorities, 14–17 there is still limited empirical evidence to support the effectiveness of these initiatives 18–21 . Structural barriers to public participation have been highlighted and include uncertainty over the practicalities of promoting patient involvement, 22–25 the precise role the public should play, 26 poorly resourced integration into systems for service improvement, 27 and professional attitudes to patient involvement 28–31 …”