Toward Co-productive Learning? The Exchange Network as Experimental Space

Policy around patient and public involvement (PPI) in the production, design and delivery of health services, and research remains difficult to implement. Consequently, in the UK and elsewhere, recent years have seen a proliferation of toolkits, training, and guidelines for supporting good practice in PPI. However, such instruments rarely engage with the power asymmetries shaping the terrain of collaboration in research and healthcare provision. Toolkits and standards may tell us little about how different actors can be enabled to reflect on and negotiate such asymmetries, nor on how they may effectively challenge what count as legitimate forms of knowledge and expertise. To understand this, we need to turn our attention to the relational dynamic of collaboration itself. In this paper we present the development of the Exchange Network, an experimental learning space deliberately designed to foreground, and work on this relational dynamic in healthcare research and quality improvement. The Network brings together diverse actors (researchers, clinicians, patients, carers, and managers) for structured “events” which are not internal to particular research or improvement projects but subsist at a distance from these. Such events thus temporarily suspend the role allocation, structure, targets, and other pragmatic constraints of such projects. We discuss how Exchange Network participants make use of action learning techniques to reflect critically on such constraints; how they generate a “knowledge space” in which they can rehearse and test a capacity for dialogue: an encounter between potentially conflictual forms of knowledge. We suggest that Exchange Network events, by explicitly attending to the dynamics and tensions of collaboration, may enable participants to collectively challenge organizational norms and expectations and to seed capacities for learning, as well as generate new forms of mutuality and care

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

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

Abstracts from the NIHR INVOLVE Conference 2017

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The making of a cultural psyche:memory between the humanities and the social sciences in post-war America

This thesis problematises the symbolic centrality of 'memory' in American intellectual culture. It critically examines the claim of cultural studies' work to have transformed memory and, with it, the understanding of subjectivity from a space internal to the individual, to a process emerging in the space of social interactions. I suggest that much current work in cultural studies is constituted through the appropriation of 'the psychological', as this domain has been established in the social sciences, despite cultural studies' explicit denunciations of such social scientific legacies. I claim that this appropriation, in fact, continues the process of domestication of psychoanalytic concepts of subjectivity, a process initiated in the domain of the American social sciences in the immediate post war years. To support this claim, I consider the earlier (1950s-1960s) investments of cognitive psychologists, sociologists and psychoanalysts in 'memory' as a retrospective construction of a past experience according to present contingencies. I focus on how these disciplines have conceptualised the forces shaping what is remembered, and how such conceptualisations reveal particular assumptions about social relations, about temporality and about the limits between self and other. To this end, I explore the links between the methodologies employed in work on the psychology of memory, child development and the sociology of communication, and the models of subjectivity that have been produced in these fields. In addition, I turn to the more recent employment of 'social memory' as a key term in American cultural history (1980s-1990s). Starting with the claim that social memory studies have taken the place of work on social reproduction, I explore the interdisciplinary exchanges that have informed this substitution. In particular, I claim that sociological, anthropological and psychological understandings of memory have effected a reshaping of the terrain of the psyche away from the psychoanalytic conceptualisation of the unconscious and use the work of psychoanalyst and philosopher Jean Laplanche to illuminate the political and epistemological stakes of such a reshaping

Affect and embodiment.

The desire to understand and conceptualise experience has been one of the animating forces underlying work in the humanities and the literature of memory in particular. In the course of the last fifteen years, this conceptualisation is manifesting as a turn to the study of affect and/or the emotions. Such a turn has meant that the understanding of memory (whether individual or social) has become tethered to non-representational embodied models. Affect is seductive to cultural theorists insofar as it is understood as not entirely bound by any psychic or social structuration and working beneath the threshold of representation, thereby problematising the models through which both memory and subjectivity have been apprehended in cultural theory. In turning their attention to affect, these scholars have increasingly engaged psychological and scientific literatures in order to undo what they see as the hegemony of representational theories in the understanding of experience within the humanities and social sciences. Our chapter interrogates the distinction between representation and affect as it is staged in several overlapping disciplines and fields of inquiry: psychoanalysis, developmental psychology, and neuroscience, and literature from the humanities and social sciences that manifests a turn to affect. In so doing, this chapter attempts to elucidate some of what is at stake in relation to conceptualisations of both memory and affect when such interdisciplinary crossings take place

Material and epistemic precarity: it’s time to talk about labour exploitation in mental health research

The conditions under which people labour in mental health research affect how and what knowledge is produced – and who benefits or doesn't from involvement in health research systems. There has been, however, little sustained investigation of the uneven modalities of labour exploitation across what are increasingly financialised systems of mental health research. This theoretical paper advances conceptual and empirical investigations of labour in health research – outlining how material precarity and epistemic precarity often go hand in hand, and largely drawing on examples from the UK. The intertwining of labour relations and epistemic cultures can be understood by bringing together insights from two bodies of knowledge not commonly in contact with one another – survivor/service user research and critical research on universities and academic labour. The article addresses how mental health research makes significant use of the labour of (i) contract researchers (many of whom work on precarious and exploitative contracts); (ii) lay contributors (through ‘patient and public involvement’); and (iii) research participants (where the conditions underpinning participation in various kinds of research increasingly blur the distinction between volunteering, and ‘gig’ work). Labour relations affect, and are affected by, efforts to change epistemic cultures and reduce epistemic inequalities, and epistemic and material precarity make efforts to improve research culture much more difficult. Those experiencing both material and epistemic precarity in health research systems need to be at the heart of efforts to combat both

Service users' and carers' views on research towards stratified medicine in psychiatry:A qualitative study

BACKGROUND: Approximately 30 % of people with a diagnosis of schizophrenia receive little to no benefit from current medications. There is therefore an urgent need to develop more precisely targeted and effective treatments. Identifying biomarkers to predict response to treatment and stratify patients into groups may be a way forward. However, we know little about service users’ and carers’ attitudes regarding such a ‘stratified medicine’ approach for psychiatry—nor how this might impact on their willingness to participate in stratified medicine research. This paper presents psychiatric service user and carer views on research to develop stratified medicine for treatment resistant schizophrenia, and explores the conditions under which people would be prepared to participate in a trial and their willingness to undergo various research procedures. METHODS: Participatory methods were used throughout. A consultation was undertaken with an existing Service User Advisory Group (SUAG) in order to establish a topic guide. Service user focus groups were then conducted by service user researchers in Manchester, London and Edinburgh (totalling 18 people) and one carer focus group in London, attended by eight participants. Focus groups were digitally recorded, the transcripts analysed in NVivo 10 using a simple thematic analysis, and quotations de-identified to protect participants. RESULTS: The data reflected enthusiasm for the potential of stratified medicine and both service users and carers demonstrated a strong desire to help others. However, some service users and carers feared poor performance on neuropsychological assessments, and reported that certain medication side effects might discourage them from undergoing procedures demanding immobility and concentration. Concerns were voiced that stratified medicine could encourage an overemphasis on biological symptoms, at the expense of psychosocial factors and subjective experience. CONCLUSIONS: People with experience of treatment resistant schizophrenia would welcome stratified medicine research; however researchers should take into account how such experience might inflect service users’ willingness to undergo various procedures in the context of this research. These results reinforce the value of service user perspectives in the development and evaluation of novel treatment approaches