Public and Patient Involvement in Theory and in Practice

Abstract

There is increasing interest in the theoretical underpinning of involving patients and the public, in health research and care, as coproduces and partners. Conducted by a participant researcher, this study theorises involvement from the perspectives of patients and members of the public. It asks: ‘What motivates and sustains patient and public involvement from the perspective of lay participants?’ Beginning from an ethical position that sees knowledge as a social product, it argues that involvement can demonstrate the public ownership of knowledge. The study uses survey data and 31 semi structured interviews, with participants from across England, covering a wide range of involvement roles and activities. It explores what inspires and what discourages involvement and how involvement impacts on participants’ sense of identity. Theoretical approaches are interrogated asking: what would involvement look like from this perspective and how would a participant’s description of involvement be shaped by this approach? These ideas were translated into games and stories, prompting further discussions with both public involvement participants and academics. Building on the model of public involvement ‘knowledge spaces,’ participants’ stories are used to describe these as liminal, complex and often paradoxical spaces. Rather than the sharply defined cube, described by Gibson, Britten and Lynch, these spaces are more like bubbles, morphing and contorting in reaction to fluctuating external and internal pressures. Knowledge spaces are politically, economically and culturally situated. Within each space different modes of action, rules, and theoretical approaches may coexist. They may have multiple instrumental purposes, while using expressive modes of action. Different involvement opportunities may call for similar skills and abilities. In acting as weak publics they may empower participation in campaigning and decision making. Conservation and change are not only matters of how organisations respond to involvement, individual participants may experience knowledge spaces as arenas through which their sense of self is maintained, transformed or reconstructed, where they connect their personal narratives to the creation of human knowledge. The complexity of these spaces, the multiplicity of external pressures and participant orientations, makes it all the more important for participants, (clinical, academic and lay) to reflect upon and share their own motivations and values. This means examining drivers and pre-existing theoretical baggage to ensure that none of these obscure the appreciation of and engagement with alternate views.The pursuit of strategic aims through these spaces requires communicative action.