Contributors are representative, as long as they agree: How confirmation logic overrides effort to achieve synthesis in applied health research.

INTRODUCTION: The paradox of representation in public involvement in research is well recognized, whereby public contributors are seen as either too naïve to meaningfully contribute or too knowledgeable to represent 'the average patient'. Given the underlying assumption that expertise undermines contributions made, more expert contributors who have significant experience in research can be a primary target of criticism. We conducted a secondary analysis of a case of expert involvement and a case of lived experience, to examine how representation was discussed in each. METHODS: We analysed a case of a Lived Experience Advisory Panel (LEAP) chosen for direct personal experience of a topic and a case of an expert Patient and Public Involvement (PPI) panel. Secondary analysis was of multiple qualitative data sources, including interviews with the LEAP contributors and researchers, Panel evaluation data and documentary analysis of researcher reports of Panel impacts. Analysis was undertaken collaboratively by the author team of contributors and researchers. RESULTS: Data both from interviews with researchers and reported observations by the Panel indicated that representation was a concern for researchers in both cases. Consistent with previous research, this challenge was deployed in response to contributors requesting changes to researcher plans. However, we also observed that when contributor input could be used to support research activity, it was described unequivocally as representative of 'the patient view'. We describe this as researchers holding a confirmation logic. By contrast, contributor accounts enacted a synthesis logic, which emphasized multiplicity of viewpoints and active dialogue. These logics are incompatible in practice, with the confirmation logic constraining the potential for the synthesis logic to be achieved. CONCLUSION: Researchers tend to enact a confirmation logic that seeks a monophonic patient voice to legitimize decisions. Contributors are therefore limited in their ability to realize a synthesis logic that would actively blend different types of knowledge. These different logics hold different implications regarding representation, with the synthesis logic emphasizing diversity and negotiation, as opposed to the current system in which 'being representative' is a quality attributed to contributors by researchers. PATIENT OR PUBLIC CONTRIBUTION: Patient contributors are study coauthors, partners in analysis and reporting.

Participatory codesign of patient involvement in a Learning Health System: How can data-driven care be patient-driven care?

BACKGROUND: A Learning Health System (LHS) is a model of how routinely collected health data can be used to improve care, creating 'virtuous cycles' between data and improvement. This requires the active involvement of health service stakeholders, including patients themselves. However, to date, research has explored the acceptability of being 'data donors' rather than considering patients as active contributors. The study aimed to understand how patients should be actively involved in an LHS. DESIGN: Ten participatory codesign workshops were conducted with eight experienced public contributors using visual, collective and iterative methods. This led contributors to challenge and revise not only the idea of an LHS but also revise the study aims and outputs. RESULTS: The contributors proposed three exemplar roles for patients in patient-driven LHS, which aligned with the idea of three forms of transparency: informational, participatory and accountability. 'Epistemic injustice' was considered a useful concept to express the risks of an LHS that did not provide active roles to patients (testimonial injustice) and that neglected their experience through collecting data that did not reflect the complexity of their lives (hermeneutic injustice). DISCUSSION: Patient involvement in an LHS should be 'with and by' patients, not 'about or for'. This requires systems to actively work with and respond to patient feedback, as demonstrated within the study itself by the adaptive approach to responding to contributor questions, to work in partnership with patients to create a 'virtuous alliance' to achieve change. PATIENT OR PUBLIC CONTRIBUTION: Public contributors were active partners throughout, and co-authored the paper.

Managing depression in people with multimorbidity: a qualitative evaluation of an integrated collaborative care model.

BACKGROUND: Patients with comorbid depression and physical health problems have poorer outcomes compared with those with single long term conditions (LTCs), or multiple LTCs without depression. Primary care has traditionally struggled to provide integrated care for this group. Collaborative care can reduce depression in people with LTCs but evidence is largely based on trials conducted in the United States that adopted separate treat to target protocols for physical and mental health. Little is known about whether collaborative care that integrates depression care within the management of LTCs is implementable in UK primary care, and acceptable to patients and health care professionals. METHODS: Nested interview study within the COINCIDE trial of collaborative care for patients with depression and diabetes/CHD (ISRCTN80309252). The study was conducted in primary care practices in North West England. Professionals delivering the interventions (nurses, GPs and psychological well-being practitioners) and patients in the intervention arm were invited to participate in semi-structured qualitative interviews. RESULTS: Based on combined thematic analysis of 59 transcripts, we identified two major themes: 1) Integration: patients and professionals valued collaborative ways of working because it enhanced co-ordination of mental and physical health care and provided a sense that patients' health was being more holistically managed. 2) Division: patients and professionals articulated a preference for therapeutic and spatial separation between mental and physical health. Patients especially valued a separate space outside of their LTC clinic to discuss their emotional health problems. CONCLUSION: The COINCIDE care model, that sought to integrate depression care within the context of LTC management, achieved service level integration but not therapeutic integration. Patients preferred a protected space to discuss mental health issues, and professionals maintained barriers around physical and mental health expertise. Findings therefore suggest that in the context of mental-physical multimorbidity, collaborative care can facilitate access to depression care in ways that overcome stigma and enhance the confidence of multidisciplinary health teams to work together. However, such care models need to be flexible and patient centred to accommodate the needs of patients for whom their depression may be independent of their LTC.

Why Am I So Exhausted?: Exploring Meeting-to-Work Transition Time and Recovery From Virtual Meeting Fatigue.

OBJECTIVE: Ineffective meetings have been well-documented as presenting considerable direct (eg, salary) and indirect costs (eg, employee burnout). We explore the idea that people need meeting recovery, or time to transition from meetings to their next task. Doing so may reduce employee burnout. METHODS: We used a quantitative survey of working adults' last meeting to determine the relationship between meeting outcomes (satisfaction and effectiveness) and meeting recovery. RESULTS: We found that meeting outcomes are related to meeting recovery and that relationship is moderated by the degree to which the meeting was relevant to the individual. Implications for theory and practice are discussed to provide concrete recommendations for researchers, managers, and consultants. CONCLUSIONS: This study explores virtual meeting fatigue with a focus on meeting quality and explores the need for recovery after workplace meetings.

Scale-up of ABC care bundle for intracerebral haemorrhage across two hyperacute stroke units in one region in England: a mixed methods evaluation of a quality improvement project.

BACKGROUND: Intracerebral haemorrhage (ICH) accounts for 10%-15% of strokes in the UK, but is responsible for half of all annual global stroke deaths. The ABC bundle for ICH was developed and implemented at Salford Royal Hospital, and was associated with a 44% reduction in 30-day case fatality. Implementation of the bundle was scaled out to the other hyperacute stroke units (HASUs) in the region from April 2017. A mixed methods evaluation was conducted alongside to investigate factors influencing implementation of the bundle across new settings, in order to provide lessons for future spread. METHODS: A harmonised quality improvement registry at each HASU captured consecutive patients with spontaneous ICH from October 2016 to March 2018 to capture process and outcome measures for preimplementation (October 2016 to March 2017) and implementation (April 2017 to March 2018) time periods. Statistical analyses were performed to determine differences in process measures and outcomes before and during implementation. Multiple qualitative methods (interviews, non-participant observation and project document analysis) captured how the bundle was implemented across the HASUs. RESULTS: HASU1 significantly reduced median anticoagulant reversal door-to-needle time from 132 min (IQR: 117-342) preimplementation to 76 min (64-113.5) after implementation and intensive blood pressure lowering door to target time from 345 min (204-866) preimplementation to 84 min (60-117) after implementation. No statistically significant improvements in process targets were observed at HASU2. No significant change was seen in 30-day mortality at either HASU. Qualitative evaluation identified the importance of facilitation during implementation and identified how contextual changes over time impacted on implementation. This identified the need for continued implementation support. CONCLUSION: The findings show how the ABC bundle can be successfully implemented into new settings and how challenges can impede implementation. Findings have been used to develop an implementation strategy to support future roll out of the bundle outside the region.

More than a method: trusting relationships, productive tensions, and two-way learning as mechanisms of authentic co-production.

BACKGROUND: Knowledge mobilisation requires the effective elicitation and blending of different types of knowledge or ways of knowing, to produce hybrid knowledge outputs that are valuable to both knowledge producers (researchers) and knowledge users (health care stakeholders). Patients and service users are a neglected user group, and there is a need for transparent reporting and critical review of methods used to co-produce knowledge with patients. This study aimed to explore the potential of participatory codesign methods as a mechanism of supporting knowledge sharing, and to evaluate this from the perspective of both researchers and patients. METHODS: A knowledge mobilisation research project using participatory codesign workshops to explore patient involvement in using health data to improve services. To evaluate involvement in the project, multiple qualitative data sources were collected throughout, including a survey informed by the Generic Learning Outcomes framework, an evaluation focus group, and field notes. Analysis was a collective dialogic reflection on project processes and impacts, including comparing and contrasting the key issues from the researcher and contributor perspectives. RESULTS: Authentic involvement was seen as the result of "space to talk" and "space to change". "Space to talk" refers to creating space for shared dialogue, including space for tension and disagreement, and recognising contributor and researcher expertise as equally valuable to the discussion. 'Space to change' refers to space to adapt in response to contributor feedback. These were partly facilitated by the use of codesign methods which emphasise visual and iterative working, but contributors emphasised that relational openness was more crucial, and that this needed to apply to the study overall (specifically, how contributors were reimbursed as a demonstration of how their input was valued) to build trust, not just to processes within the workshops. CONCLUSIONS: Specific methods used within involvement are only one component of effective involvement practice. The relationship between researcher and contributors, and particularly researcher willingness to change their approach in response to feedback, were considered most important by contributors. Productive tension was emphasised as a key mechanism in leading to genuinely hybrid outputs that combined contributor insight and experience with academic knowledge and understanding.

We conducted a study exploring how patients could be involved in improving services using health data. This paper reports on the evaluation of that study. We collected different kinds of feedback throughout, including a survey of impacts on contributors, a focus group to reflect on what worked well and what could be done better, and also sharing thoughts throughout the study itself. We analysed this feedback together, to make sure that both contributor and researcher perspectives were considered equally.We found that the successful co-production that happened during the study was the result of having 'space to talk' and 'space to change'. Space to talk that meant we all shared our views and recognised each other as experts bringing equally important knowledge. Space to change meant that we acted on the knowledge shared, to change both the study and to change how we worked together.We found that these themes occurred at multiple levels. They were partly achieved by the specific participatory codesign methods that were used, but equally or perhaps more important was the trusting relationship between the researcher and contributors, including openness to explore tensions. The wider systems that supported involvement, in this case the financial reimbursement for contributor time, were also as important to this as the things that happened within the study itself.We recommend that future work creates 'space to talk' and 'space to change', and reports openly on how both contributors and researchers are affected by this.

Patient experience of computerised therapy for depression in primary care.

OBJECTIVE: To explore patient experience of computerised cognitive behaviour therapy (cCBT) for depression in a pragmatic randomised controlled trial (Randomised Evaluation of the Effectiveness and Acceptability of Computerised Therapy, REEACT). DESIGN: Qualitative semistructured interviews with 36 participants. PARTICIPANTS: Depressed patients with a Patient Health Questionnaire 9 of 10 or above recruited into the REEACT randomised controlled trial. SETTING: Primary care settings in England. RESULTS: Participant experience was on a continuum, with some patients unable or unwilling to accept psychological therapy without interpersonal contact while others appreciated the enhanced anonymity and flexibility of cCBT. The majority of patients were ambivalent, recognising the potential benefits offered by cCBT but struggling with challenges posed by the severity of their illness, lack of support and limited personalisation of programme content. Low completion rates were commonly reported, although more positive patients reported greater engagement. Both positive and ambivalent patients perceived a need for monitoring or follow-up to support completion, while negative patients reported deliberate non-adherence due to dissatisfaction with the programme. Patients also reported that severity of depression impacted on engagement, and viewed cCBT as unsuitable for patients undergoing more severe depressive episodes. CONCLUSIONS: The study demonstrates both the unique demands and benefits of computerised therapy. cCBT was preferred by some patients and rejected by others, but the majority of patients were ambivalent about the therapy. cCBT could be offered within a menu of options in stepped care if matched appropriately to individual patients or could be offered with enhanced support to appeal to a greater number of patients. TRIAL REGISTRATION NUMBER: ISRCTN91947481.

Qualitative meta-synthesis of user experience of computerised therapy for depression and anxiety.

OBJECTIVE: Computerised therapies play an integral role in efforts to improve access to psychological treatment for patients with depression and anxiety. However, despite recognised problems with uptake, there has been a lack of investigation into the barriers and facilitators of engagement. We aimed to systematically review and synthesise findings from qualitative studies of computerised therapies, in order to identify factors impacting on engagement. METHOD: Systematic review and meta-synthesis of qualitative studies of user experiences of computer delivered therapy for depression and/or anxiety. RESULTS: 8 studies were included in the review. All except one were of desktop based cognitive behavioural treatments. Black and minority ethnic and older participants were underrepresented, and only one study addressed users with a co-morbid physical health problem. Through synthesis, we identified two key overarching concepts, regarding the need for treatments to be sensitive to the individual, and the dialectal nature of user experience, with different degrees of support and anonymity experienced as both positive and negative. We propose that these factors can be conceptually understood as the 'non-specific' or 'common' factors of computerised therapy, analogous to but distinct from the common factors of traditional face-to-face therapies. CONCLUSION: Experience of computerised therapy could be improved through personalisation and sensitisation of content to individual users, recognising the need for users to experience a sense of 'self' in the treatment which is currently absent. Exploiting the common factors of computerised therapy, through enhancing perceived connection and collaboration, could offer a way of reconciling tensions due to the dialectal nature of user experience. Future research should explore whether the findings are generalisable to other patient groups, to other delivery formats (such as mobile technology) and other treatment modalities beyond cognitive behaviour therapy. The proposed model could aid the development of enhancements to current packages to improve uptake and support engagement.

'In two minds'--socially motivated self-harm is perceived as less serious than internally motivated: a qualitative study of youth justice staff.

Community-based young offenders are at high risk of self-harm and unlikely to be in contact with mental health services. Semi-structured interviews with community youth justice staff and a content analysis of 50 records of self-harm not only revealed staff concerns about the impact of stigma on disclosure and service use, but also found dismissive attitudes towards socially motivated self-harm, which was equated with lower suicide risk and less emotional distress. Efforts to improve identification of self-harm will need to address the perceived - and false - distinction between 'genuine' and socially motivated self-harm.

Better together? a naturalistic qualitative study of inter-professional working in collaborative care for co-morbid depression and physical health problems.

BACKGROUND: Mental-physical multi-morbidities pose challenges for primary care services that traditionally focus on single diseases. Collaborative care models encourage inter-professional working to deliver better care for patients with multiple chronic conditions, such as depression and long-term physical health problems. Successive trials from the United States have shown that collaborative care effectively improves depression outcomes, even in people with long-term conditions (LTCs), but little is known about how to implement collaborative care in the United Kingdom. The aim of the study was to explore the extent to which collaborative care was implemented in a naturalistic National Health Service setting. METHODS: A naturalistic pilot study of collaborative care was undertaken in North West England. Primary care mental health professionals from IAPT (Increasing Access to Psychological Therapies) services and general practice nurses were trained to collaboratively identify and manage patients with co-morbid depression and long-term conditions. Qualitative interviews were performed with health professionals at the beginning and end of the pilot phase. Normalization Process Theory guided analysis. RESULTS: Health professionals adopted limited elements of the collaborative care model in practice. Although benefits of co-location in primary care practices were reported, including reduced stigma of accessing mental health treatment and greater ease of disposal for identified patients, existing norms around the division of mental and physical health work in primary care were maintained, limiting integration of the mental health practitioners into the practice setting. Neither the mental health practitioners nor the practice nurses perceived benefits to joint management of patients. CONCLUSIONS: Established divisions between mental and physical health may pose particular challenges for multi-morbidity service delivery models such as collaborative care. Future work should explore patient perspectives about whether greater inter-professional working enhances experiences of care. The study demonstrates that research into implementation of novel treatments must consider how the introduction of innovation can be balanced with the need for integration into existing practice.

Youth Justice staff attitudes towards screening for self-harm.

Young offenders are recognised as a high-risk group for suicidal behaviour. It is essential that the screening used to identify those at risk and refer them to mental health services is effective, especially in community settings where service utilisation is low. Staff attitudes towards screening for suicide and self-harm are likely to influence how a young offender engages with the screening process. Our study is the first to explore community youth justice staff attitudes towards, and perceptions of, screening for self-harmful behaviour. Eight semi-structured interviews were conducted at an English Youth Offending Team in June 2006 with staff who had used the suicide screening tool with young offenders. Data were analysed using Interpretative Phenomenological Analysis. Staff attitudes towards working within the screening system varied along two dimensions. The first 'active/passive' dimension related to perceived confidence in dealing with self-harm. The second 'positive/negative' dimension related to perceptions of the benefits of screening and the effectiveness of mental health provision for young offenders. Results indicate that barriers to effective screening must be tackled at both individual and organisational levels. The model of attitudes presented here could be used to increase understanding of how staff can be supported to engage effectively with the screening system.