Patient and public involvement: models and muddles

Abstract

Aims and objectives. This paper explores the range of models of involvement which are drawn upon in an empirical study and which are invoked in the literature and policy. The results and discussion of the study help to excavate and explore the muddle of conceptualisations of involvement and how this leads to difficulties for practitioners, patients and managers in implementing the relevant policy. Background. Patient and public involvement has developed an important profile internationally within health and social care policy. However, its importance as a rhetorical device has not been accompanied by adequate developments in how it is operationalised. Design. Cross-sectional study, with an intervention conducted at three sites, and non-intervention measures taken at two control sites. Methods. This paper draws on an empirical study of involvement. Focus groups were conducted with a lung cancer team and people affected by cancer at five health boards across Scotland. Chief executives of each of these five health boards also took part in individual interviews. Participants were asked to describe their ideas of what involvement is and their application of it. Results. A range of ways of conceptualising involvement were apparent. Few of these moved beyond the use of patient satisfaction questionnaires. At times, troubling understandings were articulated, for example, using public meetings to communicate decisions about service closures to the public. Conclusion. The slow escalation of involvement is in part because of the myriad ways in which it is conceptualised and discussed. Thus, we conclude that one of the greatest barriers to truly integrating patient involvement into health services, policy and research is the conceptual muddle with which involvement is articulated, understood and actioned. Relevance to clinical practice. Clinicians need to be supported to seek clarity in the use and operationalisation of involvement if the agenda is to be truly adopted and strengthened.