Exploring Difference or Just Watching the Experts at Work? Interrogating Patient and Public Involvement (PPI) in a Cancer Research Setting Using the Work of Jurgen Habermas

Bissell, Paul; Thompson, Jill; Gibson, Barry

doi:10.1177/0038038517749781

Cited by 14 publications

(18 citation statements)

References 20 publications

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“…There is a growing body of evaluations of public involvement on impact [24,[26][27][28] and on barriers and levers to impact and partnerships [29,[33][34][35]. Our coproduced self-reflective evaluation focused on implementation of involvement principles.…”

Section: Resultsmentioning

confidence: 99%

Public involvement in health research: what does ‘good’ look like in practice?

et al. 2020

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Background Patient and public involvement means researchers working with members of the public, patients or carers to jointly plan and carry out research. Aim This article is written by members of three involvement groups, and the university employees that they work with. We wanted to jointly reflect on what enables our collaborative work, and what the challenges are for everyone involved. What we did and how we did it We wanted to establish what the literature defines as 'good' public involvement and compare this with processes and practices in our involvement groups. We therefore carried out a literature review and each group met separately to discuss what characterises good involvement, and what the challenges are. From these discussions we developed a set of descriptions about each group. We compared the literature review findings with what came out of the discussions within the involvement groups. Findings Some of the involvement principles from the literature were similar to the priorities of the involvement groups. In addition, the groups identified characteristics of 'good' involvement practice that were not reported in the literature: passion and enthusiasm, informal and welcoming meeting spaces, and opportunities to share lived experiences. In this article we present examples of how principles for good involvement are practiced in these groups, and difficulties we have experienced.

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Section: Resultsmentioning

confidence: 99%

Public involvement in health research: what does ‘good’ look like in practice?

et al. 2020

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“…Yet, the notion of voice and how it may contribute to the privileging of particular ways of knowing (some) children's lives, is rarely interrogated. Some recent critiques of the use of voice in qualitative enquiry in relation to children (and broader PPI initiatives [see for example, Bissell et al, 2018;Viksveen et al, 2017]) have drawn critical attention to issues of representation and the epistemological incongruences tied to claims of authenticity (see for example, James, 2007;Spyrou, 2011). Four related issues have been raised.…”

Section: Children's Voices In Qualitative Researchmentioning

confidence: 99%

Privileges of Power: Authenticity, Representation and the “Problem” of Children’s Voices in Qualitative Health Research

Spencer

Fairbrother

Thompson

2020

International Journal of Qualitative Methods

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The widespread privileging of children’s voices in recent times has triggered expansion of differing forms of qualitative enquiry that aim to “give children a voice.” Engaging children in research and eliciting their voices on matters that affect them is often showcased as being a more “authentic” way to capture children’s lived realities and afford their agency. Yet, the uptake of voice in qualitative enquiry, and how it may contribute to the privileging of particular ways of knowing (some) children’s lives, is rarely interrogated. Drawing on examples from our own research, in this paper we critically reflect on the frequent invoking of the term voice in qualitative health research with children. In doing so, we challenge claims of authenticity by exposing the tricky epistemological tensions and relations of power that are embedded within the production and legitimation of particular voices as being “correct” ways of knowing about health—including the ways our research intentions and methods contribute to these processes. We reflect on the methodological and epistemological value of silences, dissenting voices and other modes of expression to highlight forms of resistance to adult-led health agendas. We conclude by illustrating how dominant relations of power are (re)produced within and across research spaces, and through the mobilizing or pathologizing of particular young voices through research. Possibilities for advancing ways to harness children’s preferred modes of expression in qualitative research are also considered.

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“…Yet, the framing of this literature remains predominantly research-centric: interpreting PPI and its impact within the context of the research process, rather than in the context of the contributors’ broader lives. Sociologists have applied Habermas’s theory of communicative action ( Habermas, 1989 ) to understanding patient and public contribution to research and other decision-making ( Bissell et al, 2018 ; Williams & Popay, 2001 ). Following their work, exploring the meaning of PPI only in relation to health research could reflect Habermas’s description of the “systematization” of the “life-world.” This is the encroaching of the modes of material reproduction of society—here, the health research knowledge production “system”—into the sphere in which knowledge and understanding are culturally produced: the “life-world” of PPI contributors’ everyday lives.…”

Section: Introductionmentioning

confidence: 99%

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

Reynolds

Beresford

2020

Qual Health Res

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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.

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Exploring Difference or Just Watching the Experts at Work? Interrogating Patient and Public Involvement (PPI) in a Cancer Research Setting Using the Work of Jurgen Habermas

Cited by 14 publications

References 20 publications

Public involvement in health research: what does ‘good’ look like in practice?

Public involvement in health research: what does ‘good’ look like in practice?

Privileges of Power: Authenticity, Representation and the “Problem” of Children’s Voices in Qualitative Health Research

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

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