Introduction

The key question for this chapter is: Does user involvement impact on medical regulation and governance in any significant way? In order to answer this question, it will be necessary to look at developments in user involvement over recent years. Maybe user involvement has meant that patients are being ‘empowered’, individually and/or collectively, in terms of having a greater say about their health care and where it is delivered than was traditionally the case. This would suggest that user involvement does impact on medical regulation and governance. On the other hand, more cynically, it is possible that users are being manipulated (Arnstein, 1969; Dent and Pahor, 2015) so they feel that they are involved, but in practice their participation is either symbolic or a policy instrument to ‘responsibilise’ professional autonomy (Fournier, 1999; Dent, 2006a). This means, briefly, to adapt to the requirements of the new managerialism and be demonstrably accountable too.

Before going any further, I need to clarify the main terms used here. Most importantly, ‘user involvement’ – this I am using as an umbrella term for any form of active participation in health care by patients, clients, carers and, indeed, citizens generally (as everybody at some stage in their lives accesses health care services). Moreover, user involvement within health care is a multifaceted phenomenon. First, it can be on an individual or a collective basis (for example, a patient group). Second, the form of involvement can take several forms, some of which includes citizens in general as well as patients, as in the case of Public and Patient Involvement (PPI). And third, the individual and collective approaches can take various forms, depending on whether they are primarily intended to facilitate deliberative, consumerist or collaborative processes. In earlier publications, I have (with others) modelled this terrain in terms of ‘voice’, ‘choice’ and ‘co-production’, and within the model contrasted the potential for ‘empowerment’ with the risk of ‘manipulation’ and other forms of disempowerment (Dent et al, 2011; Dent and Pahor, 2015). In this chapter I am revisiting this comparative typology, but with an emphasis on the implications for medical regulation and governance.