'A limpet on a ship': Spatio-temporal dynamics of patient and public involvement in research

“船上的帽贝”:患者和公众参与研究的时空动态

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Abstract

OBJECTIVE: To understand how current funding expectations that applied health research is undertaken in partnership with research institutions, health service providers and other stakeholders may impact on patient and public involvement (PPI). BACKGROUND: While there is considerable research on the potential impact of PPI in health research, the processes of embedding PPI in research teams remain understudied. We draw on anthropological research on meetings as sites of production and reproduction of institutional cultures and external contexts to investigate how these functions of meetings may affect the potential contributions of patients, carers and the public in research. METHODS: We present an ethnography of meetings that draws from a larger set of case studies of PPI in applied health research settings. The study draws on ethnographic observations, interviews with team members, analysis of documents and a presentation of preliminary findings through which feedback from informants was gathered. RESULTS: We identified four means by which the oversight meetings regulated research and constrained the possibilities for PPI: a logic of 'deliverables' and imagined interlocutors, the performance of inclusion, positioning PPI in an 'elsewhere' of research, and the use of meetings to embed apprenticeship for junior researchers. CONCLUSIONS: PPI is essentially out of sync from the institutional logic of 'deliverables' constituting research partnerships. Embedding PPI in research requires challenging this logic.

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