‘You're there because you are unprofessional’: patient and public involvement as liminal knowledge spaces

Abstract

Patient and public involvement in health research and care has been repeatedly theorised using the metaphor of spaces, knowledge spaces and participatory citizenship spaces. Drawing on data from a three year qualitative study of people involved in health research with organisations across England, this article explores where these spaces fit in a wider social, political and historical landscape. It outlines a theme recurring frequently in the study data: a unified public/patient/service-user perspective in opposition to a professional/clinical/academic view. This is discussed in relation to Habermas's division between the lifeworld and system. Patient and public involvement is mapped as spaces between these spheres, therefore between the social norms pertaining to them. In this way, involvement spaces are seen as liminal, in-between or threshold spaces; this concept provides us with new insights on both the opportunities and the conflicts that are integral in the ambiguous, complex interactions which take place in these spaces.

The burden of proof: The process of involving young people in research

“…In this way, instrumental involvement actions and guidance are being proposed, but we also need to consider the processes within which these actions need to be enabled. Current involvement practice can be seen as occurring within transformative “liminal spaces” where fundamental contradictions can arise, requiring communicative rather than instrumental action . An overly prescriptive use of guidance to pre‐specify the structure of involvement work should be guarded against, as it does not show us how to manage all various challenges and emergent opportunities that involvement working presents, especially when working with young people.…”

“…To strengthen the debate, we need to move beyond a focus on proving the worth of involvement outputs, and consider involvement as a complex social process …”

“…Importantly, involvement in health research has also been described as occupying “liminal knowledge spaces,” in between established academia and novel practice, where difference, ambiguity and tensions come to the fore, creating opportunities for transformation . Most studies focus on adults and less is understood about the experiences of young people involved in research.…”

Personal perspectives on patient and public involvement – stories about becoming and being an expert by experience

“…Our findings suggest that involving lay participants more actively in health services may lead to them pursuing a more professionalised role and status. Unlike the interviewees in Maguire and Britten's () study, who emphasised their ‘layness’, our participants tended to emphasise their specialist expertise and qualifications. This may lead to the development of hierarchies among the ‘lay participants’.…”

Patient and public involvement facilitators: Could they be the key to the NHS quality improvement agenda?

“…Research into PPI has mainly focused on the mechanisms of PPI, the varying perspectives on PPI and the motivations of the patients and public involved . A large body of research focuses on PPI in health research, particularly in more recent years. However, the specific role of patient and public involvement facilitators (PPIFs) remains under‐researched.…”