Portal de Periódicos da CAPES

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

2007; BioMed Central; Volume: 9; Issue: S2 Linguagem: Inglês

10.1186/bcr1801

1465-542X

David Wright, Jessica Corner, Jane B. Hopkinson, Claire Foster,

Empathy and Medical Education

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].