PPI in psychiatry and the problem of knowledge.

This article begins by locating Patient and Public involvement ((PPI) historically and argues that 'mental health' was a special case. This movement held promise for service users in repositioning them as researchers as opposed to 'subjects'. We argue, however, that ultimately it failed and was reduced to involved publics 'tinkering at the edges'. In respect to this we reference institutions, hierarchies, organisations and the overall political climate. Ultimately, however, it failed at the level of knowledge itself in that t he underlying assumptions of conventional researchers, their aims and goals, clashed with those of the assumptions and aims of survivors. However, we argue that all is not lost, the mainstream itself is imploding and beneath the surface forms of distinctly survivor-led knowledge are emerging.

Levelling the playing field: Exploring inequalities and exclusions with a community-based football league for people with experience of mental distress.

INTRODUCTION: Sport workforce strategy in the United Kingdom (UK) has identified the occupational therapy profession as being ideally positioned to contribute to public health agendas relating to tackling physical inactivity amongst marginalised populations, such as disabled people and people with experience of mental distress. However, a robust understanding of the enablers, restrictions, and exclusions such groups encounter when seeking to participate in sport and physical activity is currently lacking. METHODS: This study aimed to gain an in-depth understanding of the different ways people with experience of mental distress talked about their participation in a community-based football league in England, in the UK. Nine people took part in this strand of a larger participatory action research (PAR) study, which used go-along interviews as the method of data collection. In alignment with PAR seeking to address power imbalances, the data from the go-along interviews were analysed through a Foucauldian lens using a collaboratively produced analytic framework. FINDINGS: Participants constructed the community-based football league as fostering feelings of purpose and belonging, against a backdrop of them describing experiencing stigma and exclusion when seeking to be active in their wider communities. They used the concept of occupational marginalisation to further interpret their situation. CONCLUSION: Understanding why and how people participate in football extends beyond seeing it as an individual exercise to shared social lives and occupations. With this perspective, occupational therapists could address occupational marginalisation in partnership with community sports organisations, collaborating for wider social change beyond specialist services.

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.

Exploring Elinor Ostrom's principles for collaborative group working within a user-led project: lessons from a collaboration between researchers and a user-led organisation.

BACKGROUND: Some research has been undertaken into the mechanisms that shape successful participatory approaches in the context of efforts to improve health and social care. However, greater attention needs to be directed to how partnerships between researchers and user-led organisations (ULOs) might best be formed, practiced, managed, and assessed. We explored whether political economist Elinor Ostrom's Nobel prize winning analysis of common pool resource management-specifically eight principles to enhance collaborative group working as derived from her empirical research-could be usefully applied within a user-led project aiming to co-design new services to support more inclusive involvement of Disabled people in decision-making processes in policy and practice. METHODS: Participant observation and participatory methods over a 16-month period comprising observational notes of online user-led meetings (26 h), online study team meetings (20 h), online Joint Interpretive Forum meetings (8 h), and semi-structured one-to-one interviews with project participants (44 h) at two time points (months 6 and 10). RESULTS: Initially it proved difficult to establish working practices informed by Ostrom's principles for collaborative group working within the user-led project. Several attempts were made to put a structure in place that met the needs of both the research study and the aims of the user-led project, but this was not straightforward. An important shift saw a move away from directly applying the principles to the working practices of the group and instead applying them to specific tasks the group were undertaking. This was a helpful realisation which enabled the principles to become-for most but not all participants-a useful facilitation device in the latter stages of the project. Eventually we applied the principles in a way that was useful and enabled collaboration between researchers and a ULO (albeit in unexpected ways). CONCLUSIONS: Our joint reflections emphasise the importance of being reflexive and responsive when seeking to apply theories of collaboration (the principles) within user-led work. At an early stage, it is important to agree shared definitions and understanding of what 'user-led' means in practice. It is crucial to actively adapt and translate the principles in ways that make them more accessible and applicable within groups where prior knowledge of their origins is both unlikely and unnecessary.

Academic researchers and members of Shaping Our Lives­a national network and user-led organisation of Disabled people and service users­came together to explore whether Elinor Ostrom's Nobel Prize winning work on collaborative group working could usefully inform efforts to co-design new services to promote the inclusive involvement of Disabled people in decision-making processes. We wanted to see if Ostrom's 'principles for collaborative group working' were relevant to and could perhaps facilitate a co-design process led by a user led organisation. At first, we struggled to decide how Ostrom's principles might inform the user-led project. We tried different ways to achieve this and eventually found an approach that most but not all of us found helpful. An important change we made was to stop focusing on how the members of the user-led group were collaborating together and instead to apply the principles to specific aspects of the co-design project that were complex and could be responded to in multiple ways. By the end of the 16-month study we had found a way of using the principles to better enable collaboration between academic researchers and a user-led organisation (although not in the way we had initially anticipated). We learned how Ostrom's principles could be used to facilitate discussion of aspects of project work that are complex and the pros and cons of different plans of action. This project has demonstrated that collaboration between researchers and user-led organisations can be challenging but also has great potential for shared learning.

Decolonising global mental health: The role of Mad Studies.

In recent years, there has been a growing and high-profile movement for 'global mental health'. This has been framed in 'psych system' terms and had a particular focus on what has come to be called the 'Global South' or 'low and middle-income countries'. However, an emerging 'Mad Studies' new social movement has also developed as a key challenge to such globalising pressures. This development, however, has itself both being impeded by some of the disempowering foundations of a global mental health approach, as well as coming in for criticism for itself perpetuating some of the same problems as the latter. At the same time, we are also beginning to see it and related concepts like the UNCRPD being given new life and meaning by Global South activists as well as Global North activists. Given such contradictions and complexities, the aim of this paper is to offer an analysis and explore ways forward consistent with decolonizing global mental health and addressing madness and distress more helpfully globally, through a Mad Studies lens.

Significant ketoacidosis at autopsy: a single-centre systematic review.

AIM: To examine the value of vitreous beta-hydroxybutyrate and serum acetone in the investigation of sudden unexpected death. METHODS: Coroners' autopsy reports from a provincial UK city, with a population of approximately 900 000, over a 24-month period with significant ketoacidosis were studied. Demographic features, medical history, anatomical and histological findings, and biochemical parameters, including renal function, vitreous glucose, serum and vitreous alcohol, were analysed. RESULTS: Forty-two cases (28 males and 14 females) were identified; 55% had a history of alcohol and/or substance misuse, and mental health problems, particularly depression and anxiety, and 16% were diabetic. In all, 50% of subjects had alcoholic ketoacidosis (AKA), 19% had diabetic ketoacidosis (DKA) and 12% had a history of both diabetes and alcohol abuse. In 19% of cases, an exact cause of ketoacidosis was established. In AKA, the subjects typically had low vitreous glucose and low or undetected blood alcohol levels. All of the subjects with raised vitreous glucose levels had DKA. CONCLUSION: Ketoacidosis is relatively common and should be considered as a cause of sudden death, especially in alcoholic patients and patients with diabetes with no clear cause of death at autopsy.

Service user involvement in cancer care: the impact on service users.

BACKGROUND: Service user involvement is embedded in the United Kingdom's National Health Service, but knowledge about the impact of involvement on service users, such as the benefits and challenges of involvement, is scant. Our research addresses this gap. OBJECTIVE: To explore the personal impact of involvement on the lives of service users affected by cancer. DESIGN: We conducted eight focus groups with user groups supplemented by nine face-to-face interviews with involved individuals active at a local, regional and national level. Thematic analysis was conducted both independently and collectively. SETTING AND PARTICIPANTS: Sixty-four participants, engaged in involvement activities in cancer services, palliative care and research, were recruited across Great Britain. RESULTS: We identified three main themes: (i) 'Expectations and motivations for involvement'- the desire to improve services and the need for user groups to have a clear purpose, (ii) 'Positive aspects of involvement'- support provided by user groups and assistance to live well with cancer and (iii) 'Challenging aspects of involvement'- insensitivities and undervaluing of involvement by staff. CONCLUSIONS: This study identified that involvement has the capacity to produce varied and significant personal impacts for involved people. Involvement can be planned and implemented in ways that increase these impacts and that mediates challenges for those involved. Key aspects to increase positive impact for service users include the value service providers attach to involvement activities, the centrality with which involvement is embedded in providers' activities, and the capacity of involvement to influence policy, planning, service delivery, research and/or practice.

What Does "Good" Community and Public Engagement Look Like? Developing Relationships With Community Members in Global Health Research.

Community and public engagement (CPE) is increasingly becoming a key component in global health research. The National Institute for Health Research (NIHR) is one of the leading funders in the UK of global health research and requires a robust CPE element in the research it funds, along with CPE monitoring and evaluation. But what does "good" CPE look like? And what factors facilitate or inhibit good CPE? Addressing these questions would help ensure clarity of expectations of award holders, and inform effective monitoring frameworks and the development of guidance. The work reported upon here builds on existing guidance and is a first step in trying to identify the key components of what "good" CPE looks like, which can be used for all approaches to global health research and in a range of different settings and contexts. This article draws on data collected as part of an evaluation of CPE by 53 NIHR-funded award holders to provide insights on CPE practice in global health research. This data was then debated, developed and refined by a group of researchers, CPE specialists and public contributors to explore what "good" CPE looks like, and the barriers and facilitators to good CPE. A key finding was the importance, for some research, of investing in and developing long term relationships with communities, perhaps beyond the life cycle of a project; this was regarded as crucial to the development of trust, addressing power differentials and ensuring the legacy of the research was of benefit to the community.

Limit of detection of troponin discharge strategy versus usual care: randomised controlled trial.

INTRODUCTION: The clinical effectiveness of a 'rule-out' acute coronary syndrome (ACS) strategy for emergency department patients with chest pain, incorporating a single undetectable high-sensitivity cardiac troponin (hs-cTn) taken at presentation, together with a non-ischaemic ECG, remains unknown. METHODS: A randomised controlled trial, across eight hospitals in the UK, aimed to establish the clinical effectiveness of an undetectable hs-cTn and ECG (limit of detection and ECG discharge (LoDED)) discharge strategy. Eligible adult patients presented with chest pain; the treating clinician intended to perform investigations to rule out an ACS; the initial ECG was non-ischaemic; and peak symptoms occurred <6 hours previously. Participants were randomised 1:1 to either the LoDED strategy or the usual rule-out strategy. The primary outcome was discharge from the hospital within 4 hours of arrival, without a major adverse cardiac event (MACE) within 30 days. RESULTS: Between June 2018 and March 2019, 632 patients were randomised; 3 were later withdrawn. Of 629 patients (age 53.8 (SD 16.1) years, 41% women), 7% had a MACE within 30 days. For the LoDED strategy, 141 of 309 (46%) patients were discharged within 4 hours, without MACE within 30 days, and for usual care, 114 of 311 (37%); pooled adjusted OR 1.58 (95% CI 0.84 to 2.98). No patient with an initial undetectable hs-cTn had a MACE within 30 days. CONCLUSION: The LoDED strategy facilitates safe early discharge in >40% of patients with chest pain. Clinical effectiveness is variable when compared with existing rule-out strategies and influenced by wider system factors. TRIAL REGISTRATION NUMBER: ISRCTN86184521.

Getting ready for user involvement in a systematic review.

OBJECTIVE: This paper aims to support the critical development of user involvement in systematic reviews by explaining some of the theoretical, ethical and practical issues entailed in 'getting ready' for user involvement. BACKGROUND: Relatively few health or social care systematic reviews have actively involved service users. Evidence from other research contexts shows that user involvement can have benefits in terms of improved quality and outcomes, hence there is a need to test out different approaches in order to realize the benefits of user involvement and gain a greater understanding of any negative outcomes. DESIGN: Setting up a service-user reference group for a review of user involvement in nursing, midwifery and health visiting research involved conceptualizing user involvement, developing a representation framework, identifying and targeting service users and creating a sense of mutuality and reciprocity. SETTING AND PARTICIPANTS: Recruitment was undertaken across England by two researchers. Members from 24 national consumer organizations were selected to participate in the review. MAIN VARIABLES STUDIED: Learning was gained about finding ways of navigating consumer networks and organizations, how best to communicate our goals and intentions and how to manage selection and 'rejection' in circumstances where we had stimulated enthusiasm. RESULTS AND CONCLUSIONS: Involving service users helped us to access information, locate the findings in issues that are important to service users and to disseminate findings. User involvement is about relationships in social contexts: decisions made at the early conceptual level of research design affect service users and researchers in complex and personal ways.

Service user involvement in nursing, midwifery and health visiting research: a review of evidence and practice.

OBJECTIVES: In the UK policy recommends that service users (patients, carers and the public) should be involved in all publicly funded health and social care research. However, little is known about which approaches work best in different research contexts and why. The purpose of this paper is to explain some of the theoretical limitations to current understandings of service user involvement and to provide some suggestions for theory and methods development. This paper draws upon findings from a review of the research 'evidence' and current practice on service user involvement in the design and undertaking of nursing, midwifery and health visiting research. DESIGN: A multi-method review was commissioned by the NHS Service Delivery and Organisation (SDO) Research and Development Programme. The timeframe was April 2004-March 2005. The full report (Ref: SDO/69/2003) and supplementary bibliography are available from: http://www.sdo.lshtm.ac.uk. REVIEW METHODS/DATA: Initial searches of the health and social care literature and consultations with researchers were used to develop a broad definition of the topic area. A service user reference group (26 members) worked with the project team to refine the scope of the review, to set inclusion criteria and develop a framework for the analysis. Systematic searches of the literature were undertaken online and through library stacks (345 relevant documents were identified). Ongoing and recently completed studies that had involved service users were identified through online databases (34 studies) and through a national consultation exercise (17 studies). Selected studies were followed up using telephone interviews (n=11). Members of the service user reference group worked with the research team to advise on key messages for dissemination to different audiences. RESULTS: Information was gained about contextual factors, drivers, concepts, approaches and outcomes of service user involvement in nursing, midwifery and health visiting research, as well as developments in other research fields. Synthesis of this information shows that there are different purposes and domains for user involvement, either as part of researcher-led or user-led research, or as part of a partnership approach. A number of issues were identified as being important for future research. These include: linking different reasons for service user involvement with different outcomes; understanding the relationship between research data and service user involvement, and developing conceptualisations of user involvement that are capable of accommodating complex research relationships. Suggestions for the development of practice include: consideration of diversity, communication, ethical issues, working relationships, finances, education and training. CONCLUSIONS: Because research is undertaken for different reasons and in different contexts, it is not possible to say that involving service users will, or should, always be undertaken in the same way to achieve the same benefits. At a research project level uniqueness of purpose is a defining characteristic and strength of service user involvement.

Randomised controlled trial of the Limit of Detection of Troponin and ECG Discharge (LoDED) strategy versus usual care in adult patients with chest pain attending the emergency department: study protocol.

INTRODUCTION: Observational data suggest a single high-sensitivity troponin blood test taken at emergency department (ED) presentation could be used to rule out major adverse cardiac events (MACE) in 10%-60% of ED patients with chest pain. This is done using an 'undetectable' cut-off (the Limit of Detection: LoD). We combined the LoD cut-off with ECG findings to create the LoDED strategy. We aim to establish whether the LoDED strategy works under real-life conditions, when compared with existing strategies, in a way that is cost-effective and acceptable to patients. METHODS AND ANALYSIS: This is a parallel-group pragmatic randomised controlled trial across UK EDs. Adults presenting to ED with suspected cardiac chest pain will be randomised 1:1. Existing rule-out strategies in current use across study centres, using serial high-sensitivity troponin testing, will be compared with the LoDED strategy. The primary outcome is successful early discharge (discharge from hospital within 4 hours of arrival) without MACE occurring within 30 days. Secondary outcomes include initial length of hospital stay; comparative costs; patient satisfaction and acceptability to patients. To detect a 9% difference between the early discharge rates (assuming an 8% rate in the standard care group) with 90% power, 594 patients need to be recruited, assuming a 95% follow-up rate. ETHICS AND DISSEMINATION: The study has been approved by the Frenchay Research Ethics Committee (reference 18/SW/0038). Results will be published in an international peer-reviewed journal. Lay summaries will be made available to patients. TRIAL REGISTRATION NUMBER: ISRCTN86184521; Pre-results.

User involvement, research and health inequalities: developing new directions.

Placed in the context of broader discussions and developments about service user involvement in research and evaluation, this paper looks at the role that user involvement research may play in health inequalities research. It examines the pressures for and against such user involvement research, its different expressions and ideological relations, and what particular contribution it may have to offer in researching health inequalities. In considering how it may help in developing substantive understandings of these issues and the role it may play in the future, particular attention is paid to the issue of enabling the diverse involvement of service users in order not to reinforce existing exclusions and barriers in research, policy and practice.

Developing inclusive partnerships: user-defined outcomes, networking and knowledge--a case study.

Two major developments have been associated with the reorientation of United Kingdom health and social care policy and provision in recent years, placing a new emphasis on: quality and 'outcome' measures; and service user (and public and patient) involvement. These issues have become central to health and social care, representing expressions of the shift in political and ideological interest in public policy. However, these two strands of development have tended to be treated as discrete discourses and have developed separately in policy. Nevertheless, it can hardly be assumed that what policy makers, service planners, providers and purchasers would value and prioritise as good quality would necessarily coincide with what service users would want. Developing effective partnership working needs to go beyond considerations of organisations and professional groupings, and fully involve service users as one of the key stakeholders. This paper describes the findings of three projects undertaken by Shaping Our Lives. These studies confirmed that service-user concepts of outcomes and quality may differ significantly from those currently employed; moreover, service users are able to offer a complex and sophisticated model of what outcome measures might look like if they were centrally involved in their definition and application. Nevertheless, service users currently have little impact in defining and influencing quality outcomes. The projects also highlight the importance of networking and knowledge sharing for service users and user organisations in their ability to influence policy definitions of quality, and a number of the barriers and obstacles which undermine this process. The paper concludes with two proposals which, considered together, offer the basis for taking forward effective and inclusive partnerships and developing measures for quality consistent with the rights and preferences of service users themselves. They are an essential complement to broader efforts and strategies to develop effective partnerships in health and social care.

Personalization of health care in England: have the wrong lessons been drawn from the personal health budget pilots?

The Government has introduced personal health budgets in England's National Health Service (NHS). A three-year programme of pilots has shown that personal health budgets have improved outcomes and are generally cost-effective. They are seen as a key step toward creating a personalized service. However, the Government is attributing the success of the pilots to entirely the wrong factors. It believes that a process similar to the one introduced in social care - where it is called self-directed support - based on the person being given a sum of money 'up-front' with which to plan their own care - is responsible for the better outcomes. However, this is not supported by the evidence from the pilots which points to quite different factors being at play. The consequences are potentially very serious. The success of the pilots will not be repeated in roll out. Further, there is the potential to greatly weaken the service by creating confused process and practice, and additional dysfunctional bureaucracy. The practice and process implications from a correct reading of the reasons for success within the pilots centre on replacing the consumerist concepts underpinning self-directed support with what we have called 'flexibility through partnership'. This will require freeing up the resource base as cash and creating a policy framework to enable decisions about how much resource each person should get within a cash-limited budget that will almost certainly be less than would be required to meet all assessed need.