Survivor-led guidelines for conducting trauma-informed psychological therapy assessments: Development and modified Delphi study.

BACKGROUND: Psychological therapy assessments are a key point at which a person is accepted into a service or referred on. There is evidence of service users experiencing harm, dropping out of services and potentially experiencing poor outcomes because of inadequate assessment practices. Approaches to assessment tend to be developed by individual services, with a lack of research identifying what makes a good assessment. METHODS: This survivor-led study, based in England, aimed to generate guidelines for conducting trauma-informed psychological therapy assessments. The study was guided by a Service User Advisory Group and a Clinician Advisory Group. The study was conducted in three key stages: (i) identifying, modelling and drafting guideline content (ii) modified Delphi study and (iii) guideline finalization. Stage 1 was informed by literature reviews, qualitative research, data workshops with Advisory Groups and an expert consultation. Fifty-nine people with relevant experiences then participated in a single-stage modified Delphi (Stage 2). The guidelines were finalized through an analysis of Delphi open comments and a final expert consultation (Stage 3). RESULTS: The guidelines evolved through each stage of the process, and all items were deemed important by >90% of Delphi participants. The final trauma-informed guidelines contain eight principles, including 'focus on relationships', 'from systems to people' and 'healing environments'. CONCLUSIONS: Experiential knowledge was key in generating the guidelines and conceptualizing content, with a consequent focus on areas, such as recognizing power differentials, understanding oppression as trauma and the relational aspects of assessments. Future research should focus on guideline implementation and investigate whether this impacts service user dropout, engagement with therapy, and outcomes. PATIENT OR PUBLIC CONTRIBUTION: This study is an example of survivor research, with several authors, including the study lead, identifying as survivors. We consider the ways in which our identities as survivor researchers impacted the study findings.

'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.

Lost in the shadows: reflections on the dark side of co-production.

This article is a response to Oliver et al.'s Commentary 'The dark side of coproduction: do the costs outweigh the benefits for health research?' recently published in Health Research Policy and Systems (2019, 17:33). The original commentary raises some important questions about how and when to co-produce health research, including highlighting various professional costs to those involved. However, we identify four related limitations in their inquiry, as follows: (1) the adoption of a problematically expansive definition of co-production that fails to acknowledge key features that distinguish co-production from broader collaboration; (2) a strong focus on technocratic rationales for co-producing research and a relative neglect of democratic rationales; (3) the transposition of legitimate concerns relating to collaboration between researchers and practitioners onto work with patients, service users and marginalised citizens; and (4) the presentation of bad practice as an inherent flaw, or indeed 'dark side', of co-production without attending to the corrupting influence of contextual factors within academic research that facilitate and even promote such malpractice. The Commentary's limitations can be seen to reflect the contemporary use of the term 'co-production' more broadly. We describe this phenomenon as 'cobiquity' - an apparent appetite for participatory research practice and increased emphasis on partnership working, in combination with the related emergence of a plethora of 'co' words, promoting a conflation of meanings and practices from different collaborative traditions. This phenomenon commonly leads to a misappropriation of the term 'co-production'. Our main motivation is to address this imprecision and the detrimental impact it has on efforts to enable co-production with marginalised and disadvantaged groups. We conclude that Oliver et al. stray too close to 'the problem' of 'co-production' seeing only the dark side rather than what is casting the shadows. We warn against such a restricted view and argue for greater scrutiny of the structural factors that largely explain academia's failure to accommodate and promote the egalitarian and utilitarian potential of co-produced research.

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.

Between funder requirements and 'jobbing scientists': the evolution of patient and public involvement in a mental health biomedical research centre - a qualitative study.

BACKGROUND: In the UK, there has been a strong drive towards patient and public involvement (PPI) in health research. Its benefits include improvements in the quality, relevance and acceptability of research, and empowerment, self-respect and value for service users. Organisational context can significantly influence the operationalisation of PPI. Research has highlighted power asymmetries between clinicians, researchers and service users. A resistance to power sharing, tokenism and assimilation into the existing culture suggest that a consultative, technocratic form of PPI is operating within health research settings. The aim of the study was to explore the development of PPI within a London based mental health biomedical research centre (BRC) over a period of 10 years from its inception. METHODS: This qualitative study compared data from 52 organisational documents and 16 semi-structured interviews with staff and service users associated with PPI within the Maudsley BRC. The data were analysed using inductive thematic analysis. Study design, data collection, analysis and write up were conducted by service user researchers. RESULTS: Our analysis showed a picture of increasing activity and acceptance of PPI, its alignment with the broader BRC research agenda, progressive involvement of service users in governance, and the development of a collaborative culture in research processes. The presence of salaried service user researchers in the organisation was key to this progress. However, PPI remained localised and under resourced and there was a reluctance to change working practices which resulted in perceptions of tokenism. Service users faced conflicting expectations and were expected to assimilate rather than challenge the organisation's 'biomedical agenda'. CONCLUSIONS: Service user researchers may play a key role in establishing PPI in a scientific, hierarchical research environment. Adoption of a more democratic approach to involvement would build on the good work already being done and help to transform the culture and research processes. However, such an adoption requires considerable changes to the funding and policy environment orienting health research.