User Involvement in Cancer Services

Abstract

User involvement has been a key part of government policy for a decade, but to what extent are users involved? From the Patient’s Charter [1] to NHS complaints systems, user involvement has been stressed as important. Yet the term ‘user involvement’ is itself not uncontested. For some it is the extent to which patients play an active role in decisions made about their care and treatment. For others the term refers to the inclusion of broader public ‘user’ input into planning decisions about the organization and delivery of NHS services. Even the most recent Department of Health publication refers to these two aspects as ‘a commitment to give people at a local level the power to make decisions about the range of services that are needed ..... This means giving patients more information, and encouraging healthcare professionals to treat patients as equal partners in the decision making process’ [2]. A key aspect of promoting this shift towards greater involvement, of both types, in the NHS has been through the Health in Partnership Policy Research Programme. This £2.5 million programme is ‘designed to inform understanding of the effect of user involvement in the NHS’ [3]. This Editorial presents an outline of current innovative research funded under this initiative that seeks to develop and evaluate existing approaches to involving users in cancer services. A 3-year project, ‘Developing and evaluating best practice for user involvement in cancer services’, was initiated in October 1999, based at Avon, Somerset and Wiltshire Cancer Services. (The research is directed by a project steering group, which includes N. Daykin (University of the West of England), J. McNeill (Cancerlink), S. Mitchard (Avon, Somerset and Wiltshire Cancer Services (ASWCS)), R. Newport (University of the West of England), J. Rimmer (ASWCS) and P. Turton (Bristol Cancer Help Centre), as well as the authors.) The project involves clinicians in the multidisciplinary teams, academics from the University of Warwick and the University of the West of England, Cancerlink and the Bristol Cancer Help Centre. We are investigating current