“An Active, Productive Life”: Narratives of, and Through, Participation in Public and Patient Involvement in Health Research

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.

Conceptualising and constructing ‘diversity’ through experiences of public and patient involvement in health research

“…Expectations of undertaking PPI work and motivations for continuing with PPI are diverse among contributors, extending beyond health experiences, and evolving over time [18]. Recognising these different expectations, and finding ways to accommodate and support them, is vital for ensuring continuing inclusivity of opportunity in PPI.…”

“…The results reported here draw from the focus group discussion and from how interview participants talked about their motivations, relationships and experiences in PPI. More detailed description of the in-depth interview methodology, and interview participants' narratives of how PPI intersects other areas of their lives are reported elsewhere [18].…”

“…Diversity of other characteristics (such as ethnicity, education level or socio-economic status) were not actively sought when recruiting interview participants, due to the sample size. However, participants' varied backgrounds and identities emerged through their accounts of their experience; some of this is captured in the Findings below, and more detail is reported elsewhere [18]. Interviews were held at participants' homes or at Sheffield Hallam University and were conducted by JR and RB.…”

“…Next, they compared their open coding and discussed their interpretations, before JR synthesised and refined the coding to eight themes. The interviews were first analysed by JR using a narrative approach to identify chronological stories of participants' PPI experiences, and to explore how meaning was communicated through these stories; see [18] for more detail on the narrative analysis. Through discussion among all authors, the interview transcripts were then further analysed against the set of themes identified in the focus group transcript, enabling comparison between the perspectives of the professional stakeholders and PPI contributors.…”

“…There were differences of opinion shared about what constitutes a 'professionalised' PPI contributor, and whether it is necessarily problematic. Among the contributors, a wide range of motivations were identified for getting involved in PPI initially, and for continuing in PPI; these are described in more detail elsewhere [18]. All contributors expressed a drive to pursue new PPI opportunities, and develop new skills and expertise, but for different reasons, including for social and financial status, and as a form of activism.…”