Translating Patient Experiences into Clinical Practice: An Example of ‘Patient involvement’ from Psychosocial Cancer Rehabilitation in Denmark

Abstract

In this article we examine meanings and uses of the concept of patient involvement, using a psychosocial cancer rehabilitation intervention in Denmark as an example. Drawing on Scandinavian sociological institutional- ism, we analyse the translation process of the concept and how it is understood, shaped and practised in four interrelated contexts: patients’ experience of cancer care; a call for research bids to improve cancer care; a research project of psychosocial cancer rehabilitation; and the implementation of the project’s intervention in clinical practice. Our analysis reveals distinct understandings and practices of patient involvement informed by the various actors’ perspectives and the structures of the healthcare system. The meaning of patient involvement changed from patients seeking to engage in healthcare on their terms, to patients being expected by researchers and healthcare professionals to be ‘active patients’ in particular ways. Our analysis highlights the importance of critically examining the phenomenon of patient involvement in local contexts.