The case for user involvement in research: the research priorities of cancer patients

David Nm Wright,Jessica L Corner,Claire L Foster,Jane B Hopkinson

doi:10.1186/bcr1801

Abstract

User involvement in health research has increased in influence in recent years. (The definition of 'user' is contentious. The term does not solely include patients and their carers, but may also include members of the general public, potential patients and public, community and voluntary organizations and health professionals. This paper uses this broader definition of the term.) Involving users in research activity inevitably challenges the traditional autonomy of expert clinicians or academics in the research process. Consequently, attitudes to user involvement are typically polarized, either perceiving such involvement as a universal panacea or as a malevolent force that jeopardizes research practice. This paper moves beyond simplistic characterizations of user involvement to consider the benefits of engaging users in research and reflects on commonly asserted criticisms of such activity. Findings from a recently completed research prioritization exercise, the Macmillan Listening Study, will be cited to justify the need to involve users in research [1].

Highlights

User involvement in health research has increased in influence in recent years
The Macmillan Listening Study illustrates the important role that users can have in research
Reflecting on user involvement more broadly, it is important to note that, regardless of personal opinion, user involvement is firmly established as a necessary facet of health research

Summary

Introduction

User involvement in health research has increased in influence in recent years. Communication skills and breaking of bad news by health care professionals have been identified by clinicians as important areas for research and have been extensively researched [15], participants in the Macmillan Listening Study were interested in how patients can communicate their diagnosis and treatment with partners, family members and others close to them. This area of research has received less attention [14]. Findings from the Macmillan Listening Study suggest that the scope of cancer research activity should be greater to reflect a broad spectrum of interests, including those of people affected by the disease

Conclusion

Department of Health