Developing user involvement in a UK cancer network: professionals’ and users’ perspectives

Abstract

This paper explores the results of a consensus development exercise that explored diverse perspectives and sought to identify key principles for the development of user involvement in a cancer network. The exercise took place within one of 34 UK cancer networks and was a collaboration between the NHS, two universities and two voluntary sector organizations. The paper explores professionals’ and users’ perspectives on user involvement with reference to the current sociopolitical context of user participation. British policy documents have placed increasing emphasis on issues of patient and public participation in the evaluation and development of health services, and the issue of lay participation represents an important aspect of a critical public health agenda. The project presented here shows that developing user involvement may be a complex task, with lack of consensus on key issues representing a significant barrier. Further, the data suggest that professional responses can partly be understood in relation to specific occupational standpoints and strategies that potentially allow professionals to define and limit users’ involvement. The implications of these findings and the impact of the consensus development process itself are discussed.

Acknowledgements

This study was part of a three-year project funded by the Department of Health under the Health in Partnership’ research initiative. The project was a collaboration between Avon Somerset and Wiltshire Cancer Services, the University of the West of England, Bristol, Warwick University, Macmillan Cancer Relief/Cancerlink and the Bristol Cancer Help Centre. The authors are grateful to Sarah Mitchard and Ruth Newport, who provided invaluable help at the early stages of the project, and to the project steering group whose members include Victor Barley, Judith McNeill, Nigel Palmer and Pat Turton. Thanks are also due to Nick DeViggiani, David Evans, Christine Farrell, Mat Jones, Judy Orme and Deborah Salmon for their useful comments on earlier drafts of this paper. Responsibility for any errors is the authors’ alone.