Abstract
Public and patient involvement (PPI)—engaging the public in designing and delivering research—is increasingly expected in health research, reflecting recognition of the value of “lay” knowledge of illness and/or caring for informing research. Despite increased understanding of PPI experiences within the research process, little attention has been paid to the meaning of PPI in other areas of contributors’ lives, and its value as a broader social practice. We conducted repeated narrative interviews with five experienced PPI contributors from the United Kingdom to explore how meaning is constructed through narratives of PPI in relation to their broader “life-worlds.” Narratives were extremely varied, constructing identities and meanings around PPI in relation to family and social life, career and employment, financial status, and wider social agendas, as well as health. This emphasizes the importance of recognizing PPI as a social practice with diverse meaning and value beyond health research.
Highlights
The involvement of patients and the public in the design and delivery of health research has become an established and expected practice in the United Kingdom and internationally
We first describe the personal trajectories and identities constructed through the narrative of their public and patient involvement” (PPI) experiences, and second, we highlight the broader narratives represented and engaged within the participant’s account
While the narratives constructed by participants in the interviews were highly individualized and specific to their personal circumstances and experiences, there are broader issues implicated through these narratives that are relevant to understanding PPI as a social practice
Summary
The involvement of patients and the public in the design and delivery of health research has become an established and expected practice in the United Kingdom and internationally. Termed “public and patient involvement” (PPI), it reflects a range of moral, democratic, and instrumental arguments around valuing and representing the “voice” of the potential beneficiaries of health research. It can be situated in a broader “participatory shift” (Madden & Speed, 2017), characterized by increasing opportunity and expectation for citizen contribution to policy and decision-making processes. What has received far less attention is how the role of the PPI contributor intersects and is negotiated in other areas of people’s lives, not just within the health research context. To consider how PPI might be understood as a meaningful social practice, this article describes how experienced PPI contributors situate their PPI experiences in broader narratives of their lives
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