Patient and Public Involvement (PPI): developing a conceptual framework from an exploratory study of three healthcare providers

PPI has been growing considerably in the last 15 years in the UK's National Health Service (NHS) following shifts in the relationship between institutions and the public. Various legislative changes during this period have moved the NHS towards a consumerist model of delivery with a greater emphasis on the voice of their service users and the public. High profile cases, such as the severe failings at the Mid-Staffordshire NHS Foundation Trust (Francis, 2013), have provided impetus for PPI. However, despite increases in PPI-related activities, research into PPI methods and their impact have indicated that both methods and impact are difficult to evaluate (e.g. Conklin et al., 2012). Many existing models of PPI appear to over simplify what is a complex social phenomenon. Relatively simple early models such as the ladder of participation (Arnstein, 1969) are still widely referenced. Many studies have focused on individual PPI activities and individual stakeholder perspectives but have paid less attention to the commonalities and differences across and within stakeholder groups and PPI contexts. This study explored the complexities of PPI by collecting detailed observational, documentary and interview data from three different healthcare provider organisations (a mental health trust, a social enterprise, and an acute hospital trust). A range of methods (observations, semi-structured interviews, and document reviews) were used to explore in depth the complex nature of PPI and capture detailed data about contextual and organisational factors. Furthermore, whilst this study aimed to explore a range of activities and individual perspectives across multiple organisations, the ultimate outcome of this research was to produce a conceptual framework that extends theory by placing greater emphasis on the influence of contextual and societal factors. This study identified a plethora of factors that contribute to successful PPI; some of which had been found in previous research (such as personal barriers for laypeople). The constraining role of organisational structures and hierarchies; the strong influence of Government policies and initiatives; and the gatekeeping role of PPI facilitators were novel to this research, or added nuances to existing literature. With regards to the latter, a key finding was the significant role PPI facilitators play in both the implementation and success of PPI work. Their role is essentially a mediator between their employer and patients and the public. This study identified that the role of the voice of patients and the public is negotiated via PPI facilitators, making these key to the success of PPI. PPI facilitators were both responsible for facilitating PPI activities and reporting back the results of that work to senior management (including Board members); the ultimate goal of which was to influence service improvements as well as long term organisational strategies. These findings indicate that a conceptual framework of PPI is needed that considers not just individual perspectives and methods of PPI, but also the process of negotiation via PPI facilitators in making PPI a success.