“How can anybody be representative for those kind of people?” Forms of patient representation in health research, and why it is always contestable

Abstract

Different discourses that co-exist within the world of patient and public involvement in health and social care mirror a tangle of historical, social, political and theoretical roots. These range from the radical activism, born of civil rights movements, to a more passive model in which patients are the recipients of information. This paper explores the concept of 'representation' and the ways the concept is used by people serving as 'patient' or 'lay' representatives in a range of roles within research projects, funding bodies and academic institutions. We address the issue of why the representativeness of those involved is contestable. Drawing on qualitative research and engaged practice as well as on literature from social and political sciences we question how people conceptualise their own and their fellows' acts of representation. In doing this we identify nine different conceptualisations of what it is to represent and use these to explore how judgements are made about what can count as legitimate forms of representation.

‘Adding another spinning plate to an already busy life’.Benefits and risks in patient partner–researcher relationships: a qualitative study of patient partners’ experiences in a Canadian health research setting

“…36 Other published studies have highlighted that issues of diversity in patient engagement in research warrant further examination. [37][38][39] We recognise there may be limitations in the degree to which our findings might be transferred in situations involving patient partners of different sociodemographic characteristics than in the context of our study.…”

Consumer engagement critical to success in an Australian research project: reflections from those involved

“…Researchers are criticised for predominantly engaging consumers in development activities, or favouring consultation only, rather than in core decisions and activities throughout the research cycle (Lawn 2016;Ocloo and Matthews 2016). Variations in terminology and conceptualisations (Shippee et al 2015), contested definitions of 'consumer' (Maguire and Britten 2017) and limited practice reporting (Staniszewska et al 2011;Boote et al 2015) compound uncertainties. Recent reports focused on quantifying consumer engagement effects in research (Brett et al 2014a(Brett et al , 2014b, but limited descriptions of actual processes hinder replication, shared learning and expertise building (Staniszewska et al 2011).…”

Involving patients and publics in medical and health care research studies: an exploratory survey on participant recruiting and representativeness from the perspective of study authors

“…Others assessed how representativeness is understood in different contexts using qualitative interviews [17], and current challenges from the perspective of research network members [22]. While the latter did not address representativeness per se, they even speak of a "crisis of representation".…”

“…Also, as long as PPI is a 'side feature' rather than an integral part of research, the organizational and financial resources of research teams may not allow for highly sophisticated recruiting processes that ensure good representativeness. Hence, "true representation" may be difficult to achieve in practice [16][17][18] and may not be desirable in each case.…”

“…Various previous studies assess and debate PPI terminology and the challenges it entails [2,13,14], different types of representativeness and how they are used [17,19], and current PPI practices more broadly [20][21][22][23], using for instance debates, framework developments, and literature reviews. Few studies take a more practice-oriented approach by conducting interviews with professionals on PPI in general [24,25], and with small sample sizes [17,22]. The GRIPP2 checklist for reporting PPI in research recommends to describe and transparently define the individual steps taken during PPI, such as the definition of PPI for that study and the methods used [26].…”