Developing user involvement in a UK cancer network: Professionals' and users' perspectives

Evans, S.; Rimmer, J.; Tritter, J.; Sanidas, M.; Daykin, Norma

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. © 2004 Taylor & Francis Ltd.

• Journal Article Type: Article
• Publication Date: Sep 1, 2004
• Journal: Critical Public Health
• Print ISSN: 0958-1596
• Electronic ISSN: 1469-3682
• Publisher: Taylor & Francis (Routledge)
• Peer Reviewed: Peer Reviewed
• Volume: 14
• Issue: 3
• Pages: 277-294
• DOI: https://doi.org/10.1080/09581590400004402
• Keywords: cancer, cancer network
• Public URL: https://uwe-repository.worktribe.com/output/1057611
• Publisher URL: http://dx.doi.org/10.1080/09581590400004402
• Additional Information: Additional Information : This paper reports findings from a DH funded study and discusses a consensus development process that Daykin led with over 300 stakeholders. The aim of the paper is to contribute to the development of methodologies for user involvement research, a concern that extends beyond cancer care to broad public health and social science concerns. Its impact is reflected in a major subsequent funding success (with David Evans) with £224,829 awarded by the DH for the Evaluation of Patient Advice and Liaison Services. Contribution 70%.