Introduction

The origins of service user (or patient), carer and public (and community) involvement in health and social care, commonly known as patient and public involvement (PPI), can be traced well back before the inception of the NHS (Gorsky, 2008), influenced by the emergence of health-related social movements and to the civil rights movements of the 1960s. The consequent evolution of a wide range of deliberative processes has spawned a varied and contested terminology, masking different purposes and intentions resulting in different understandings (Baggott, 2005; Stewart, 2013). The purpose of PPI is typically conceived of as shifting the balance of power within the health system so that service users, carers and the public have a greater say in the organisation and delivery of care at the macro-, meso- and micro-levels, in terms of decisions about individual and collective health and social care. PPI is often framed in terms of addressing the democratic deficit in the NHS (Baggott, 2005) but in England, since 2000, it has become increasingly aligned with the reform of the NHS to become patient centred by enabling people to exercise choice as a right and responsibility across all aspects of health care. Since then, there has been a rapid diversification of approaches to and methods for PPI, which experienced organisational turbulence under the Labour administration. The complexity and ambiguity of purpose of Labour's PPI reforms were widely criticised for privileging choice over voice, indicative of a changing relationship between the individual and the state with increased marketisation of the health and social care sector and devolution, in tandem with globalisation (Tritter, 2009). PPI was, therefore, far from a tabula rasa, when the Conservative–Liberal Coalition government came into office in 2010.

Conceptualising PPI

Viewed as intrinsically good (Florin and Dixon, 2004), the purpose of PPI is variously framed in terms of self-determination and challenging professional paternalism (Williamson, 2014); promoting social justice though recognising the different epistemologies of health and illness of service users, carers, the wider public and health professionals (Beresford, 2005; Carel and Kidd, 2014); increasing the accountability of the health sector and defending social citizenship (Martin, 2008; Warsh, 2014); generating public value and legitimacy, including more effective use of public resources (Tritter and Koivusalo, 2013); promoting rights, and increasingly, responsibilities (Department of Health, 2009), and potentially leading to better health outcomes and reducing health inequalities (Popay, 2006).