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Increased public awareness of antimicrobial resistance (AMR) is a key component of effective antimicrobial stewardship strategies. Educational theatre combined with an expert panel was used to engage the public about AMR through delivery of a play entitled 'The drugs don't work'. Audience knowledge and understanding of AMR were measured by pre- and post-play questionnaires. Performance of the play and discussion with the expert panel significantly improved audience knowledge and understanding of AMR, including antibiotic misuse and prescribing. Educational theatre provides a positive learning experience and is an innovative method of public engagement to disseminate important public health messages.

Background: Informal carers play an important role in the care of patients with mental illness. Little is known of the relationship experience of the patient and their informal carer (caring dyad) as the context for the intersection between physical and mental health.\ud Aim:This study aimed to explore the impact of comorbid cardiometabolic risk(CMR), metabolic syndrome (MetS) and related diseases and severe mental illness(SMI) on the caring dyad.\ud Design: Between October 2018 and March 2020, we conducted 11 indepth semistructured interviews across 6 adult caring dyads, interviewing each individual separately\ud Setting: Dyads were recruited within the United Kingdom; informal carers were nominated by the patient as a person who provided a significant amount of support.\ud Variable Being Studied: Participants were asked about the impacts of illness and caring on daily life.\ud Data Analysis: Data were analysed at the dyad level using thematic analysis,comparing and contrasting responses from each individual.\ud Results: Themes were identified: enhanced closeness, dissonance and balance within the caring dyad.\ud Discussion and Conclusions: This study uses a particular population of patients with comorbid CMR factors, MetS and related diseases and SMI and their informal carers to explore the relevance and utility of caring dyads as an analytical framework to inform practice and policy. Future interventions should consider factors impacting on dyadic relationships to formulate effective and sustainable dyadic care and treatment to improve health outcomes for both patients with SMI and their informal carers.\ud Patient/Public Involvement: In this study, patients and informal carers were participants. Topic guides were piloted with a patient and informal carer.

The aim of this article is to elucidate how male and female managers of small-scale enterprises in Norway and Sweden relate to and experience the intersection between work and private life. A qualitative content analysis was adopted to explore interviews with 18 managers. The analysis resulted in three primary categories: conflict as a part of the deal, using management to construct balance, and management identity contributing to enrichment. A key theme that emerged was doing management. Both men and women reproduced masculine values in describing their management identities and in explaining how they enacted management. This clear identification was used to legitimate conflict, construct balance and explain the interaction between work and private life as enriching. How the managers enacted gender emerged primarily in how they related to family responsibilities and their feelings of guilt in relation to home and children.

This chapter looks at focus groups, which grew out of both a therapeutic and marketing tradition and have been utilized by social scientists for many years. Their format constitutes a type of interview technique where six to twelve people are brought together and encouraged to discuss specific topics for 60–90 minutes in order that underlying issues might be explored. Focus groups are often used to investigate areas about which relatively little is known, and they are premised on face-to-face interactions between participants rather than direct responses to questions. More recently they have been adapted to online settings, particularly for hard-to-reach populations. Focus groups are valuable because they capture and harness group interaction to prompt fuller and deeper discussion and the triggering of new ideas. But in order for these dynamics to develop, it is vital that people’s stories are not already well known to each other.

Editorial piece.

Highlights • This article provides insights into the evolution and implications of the Norwegian policy response to the COVID-19 crisis. • Three different agendas motivated the Norwegian policy response: limiting disease spread, mitigating economic effecs and engaging with the social consequences. • The oil and gas industry and the Sovereign Wealth Fund insulate Norway from the full economic consequences of the pandemic and policy response. • The social implications of the policy response and the pandemic, particularly on young people are a key consideration for the emergence from the crisis., Objectives To describe the impact and policy response to the COVID-19 Pandemic on Norway and the implications this has for future policy development and Norwegian society. Methods Documentary analysis of publicly available statistics, government documents and media sources. Results Three different agendas motivated Norwegian policy: stemming the spread of the virus domestically, mitigating the impact on the economy and addressing the social costs of the policy response. Conclusions The oil and gas industry and the Sovereign Wealth Fund have permitted Norway to manage the costs of the pandemic. But may also lead to a shift in government priorities in health, social and economic policy.

Patients treated in psychiatric care are exposed to the risk of adverse events, similar to patients treated in somatic health care.In this article we report the findings of triggers associated with adverse events (AEs) identified by a version of the Global Trigger Tool - Psychiatry (GTT-P) adapted for Norwegian hospital-based psychiatric treatment.The design was a retrospective analysis of a random sample of 240 patient records from a psychiatric clinic in one Norwegian hospital. Patient records were sampled from both inpatient and outpatient psychiatric clinics in hospitals serving the northern part of the county of Trøndelag, Norway.Our analysis was based on the identification of 32 potential triggers of adverse events. Eighteen of the triggers were significantly related to adverse events. No adverse events were identified in patient records that did not also contain triggers included in the Global Trigger Tool.There is a clear relationship between the presence of triggers in a patient record and the likelihood of adverse events. Particularly relevant for psychiatric patients is 'suffering' as a trigger and this may also be relevant to somatic care and has implications for inclusion in the GTT-P.

Patient and public involvement (PPI) is framed as beneficial for individuals and for the health system. However, little is known about the extent of involvement, or of its impact. Based on data from Sweden, we show that apart from voting in regional elections (76%), more people reported involvement as individual patients (23%) than part of collective activities (5%) or activities relating to a citizen perspective (4%). There was no correlation between how many people participated and the estimated impact – which was generally low. More extensive involvement is thus not linked to the potential to influence decisions. We argue that to achieve the benefits associated with PPI it is crucial to understand more about people's motivation for being involved and what underlies low estimates of impact. This requires a more systematic approach to involvement, how it is evaluated and its results communicated to participants and the society. We also argue that a future challenge for the Swedish health system, and for other similar health systems, is to support long-term collective involvement in the midst of growing individualization of health services and involvement opportunities primarily intended for patients.

We explore how Norwegian self-help groups are defined and managed to create a particular form of health system governmentality. Self-help groups are typically framed as therapeutic communities where participants define the agenda creating a space where open and equal interaction can produce individual learning and personal growth. In Norway, however, self-help groups are managed in a way that integrates them in to the health system but insulates them from clinical medicine; an approach that disciplines participants to act in a particular way in relation to the health system. We draw on the analysis of 1456 pages of public documents and websites from the National Nodal Point for Self-Help (NPSH), the organisation that manages self-help groups, and central government including individual testimonies from participants published between 2006 and 2014. We argue, drawing on Foucault, that self-help premised on lay-leadership and self-determination is at odds with the centrally defined regulation apparent in the model adopted in Norway and an example of disciplining that reinforces health system governmentality and serves the interests of the medical profession and the state. Further we propose that this illustrates the contestation between the pastoral power of medics, the National Nodal Point for Self-Help and the Ministry of Health. Our analysis of Norwegian self-help as a mechanism to create a particular form of health system governmentality helps explain the expansion of self-help and self-management within developed health systems and provides an explanation for why self-help within health systems, is typically situated adjacent to, rather than integrated into, clinical medicine. This article is available under the Creative Commons CC-BY-NC-ND license and permits non-commercial use of the work as published, without adaptation or alteration provided the work is fully attributed.

Aim: ‘Participation and influence in society’ is the first of 11 objective domains in Swedish public health policy. The aim of this article is to investigate the views of the Swedish general population on the impact of a range of health participation activities, and whether these views were associated with sociodemographic characteristics. Methods: The study utilizes a national representative survey of the Swedish population, aged 15 years and over ( n = 1500). Results: Apart from voting in regional elections – which most of the respondents believed to be an influential way to make improvements in healthcare (74%) – respondents believed more in individual patient activities than activities associated with adopting a citizen role and acting collectively. A majority of respondents believed in the impact of replying to patient surveys (67%), making a complaint (61%), talking directly to staff (58%) or changing their healthcare provider (54%). Fewer believed in the impact of joining a patient organization (46%), taking part in a citizen council (35%) or joining a political party (34%). Beliefs in impact increased with educational attainment and decreased with age. Conclusions: The results suggest people have more confidence in the impact of participating as individual patients rather than collectively and as citizens. To ensure that activities enable ‘participation and influence in society’, complementary opportunities for collective involvement that also take into account under-represented voices such as those with a low level of education need to be developed.

Background Patient and public involvement (PPI) is framed as positive for individuals, the health system, public health, as well as for communities and society as a whole. We investigated whether preferences for PPI differed between two countries with Beveridge type health systems–Sweden and England. We measured willingness to be involved in individual treatment decisions and in decisions about the organization and provision of local health and social care services. Methods This was a comparative cross-sectional study of the general population’s preferences. Together, the two samples included 3125 respondents; 1625 in England and 1500 in Sweden. Country differences were analysed in a multinomial regression model controlling for gender, age and educational attainment. Results Overall, 68% of respondents wanted a passive patient role and 44% wanted to be involved in local decisions about organization and provision of services. In comparison with in Sweden, they were in England less likely to want a health professional such as a GP or consultant to make decisions about their treatment and also more likely to want to make their own decisions. They were also less likely to want to be involved in local service development decisions. An increased likelihood of wanting to be involved in organizational decision-making was associated with individuals wanting to make their own treatment decisions. Women were less likely to want health professionals to make decisions and more likely to want to be involved in organizational decisions. Conclusions An effective health system that ensures public health must integrate an effective approach to PPI both in individual treatment decisions and shaping local health and social care priorities. To be effective, involvement activities must take in to account the variation in the desire for involvement and the implications that this has for equity. More work is needed to understand the relationship between the desire to be involved and actually being involved, but both appear related to judgements of the impact of involvement on health care decisions.

This article explores the implications of how US family physicians make decisions about ordering diagnostic tests for their patients. Data is based on a study of 256 physicians interviewed after viewing a video vignette of a presenting patient. The qualitative analysis of 778 statements relating to trustworthiness of evidence for their decision making, the use of any kind of technology and diagnostic testing suggests a range of internal and external constraints on physician decision making. Test-ordering for family physicians in the United States is significantly influenced by both hidden cognitive processes related to the physician's calculation of patient resources and a health insurance system that requires certain types of evidence in order to permit further tests or particular interventions. The consequence of the need for physicians to meet multiple forms of proof that may not always relate to relevant treatment delays a diagnosis and treatment plan agreed not only by the physician and patient but also the insurance company. This results in a patient journey that is made up of stuttering steps to a confirmed diagnosis and treatment undermining patient-centred practice, compromising patient care, constraining physician autonomy and creating additional expense. © 2014 Elsevier Ltd.

The ambitious and comprehensive Transatlantic Trade and Investment Partnership Agreement (TTIP/TAFTA) agreement between the European Union and United States is now being negotiated and may have far-reaching consequences for health services. The agreement extends to government procurement, investment, and further regulatory cooperation. In this article, we focus on the United Kingdom National Health Service and how these negotiations can limit policy space to change policies and to regulate in relation to health services, pharmaceuticals, medical devices, and health industries. The negotiation of TTIP/TAFTA has the potential to “harmonize” more corporate-friendly regulation, resulting in higher costs and loss of policy space, an example of “trade creep” that potentially compromises health equity, public health, and safety concerns across the Atlantic.

Patient and public involvement has become an integral aspect of many developed health systems and is judged to be an essential driver for reform. However, little attention has been paid to the distinctions between patients and the public, and the views of patients are often seen to encompass those of the general public. Using an ideal-type approach, we analyse crucial distinctions between patient involvement and public involvement using examples from Sweden and England. We highlight that patients have sectional interests as health service users in contrast to citizens who engage as a public policy agent reflecting societal interests. Patients draw on experiential knowledge and focus on output legitimacy and performance accountability, aim at typical representativeness, and a direct responsiveness to individual needs and preferences. In contrast, the public contributes with collective perspectives generated from diversity, centres on input legitimacy achieved through statistical representativeness, democratic accountability and indirect responsiveness to general citizen preferences. Thus, using patients as proxies for the public fails to achieve intended goals and benefits of involvement. We conclude that understanding and measuring the impact of patient and public involvement can only develop with the application of a clearer comprehension of the differences.

Since 1948, the United Kingdom (UK) has operated a National Health Service funded primarily through public taxation where health services are available based on need and free at the point of delivery with limited out-of-pocket copayment. Other European predominantly public taxation funded systems operate, for example, in Sweden, Denmark, Finland and Italy. Domestic policy decisions have been devolved from London and England to Wales, Scotland and Northern Ireland since 1999, although for the latter full devolution did not really occur until 2007. One consequence of devolution has been the growing divergence in policy and practice across the four countries within the United Kingdom. This digest summarizes the evolution of key policies across the United Kingdom and then identifies some of the distinctions between the four different administrations.

Background Changing the relationship between citizens and the state is at the heart of current policy reforms. Across England and the developed world, from Oslo to Ontario, Newcastle to Newquay, giving the public a more direct say in shaping the organization and delivery of healthcare services is central to the current health reform agenda. Realigning public services around those they serve, based on evidence from service user's experiences, and designed with and by the people rather than simply on their behalf, is challenging the dominance of managerialism, marketization and bureaucratic expertise. Despite this attention there is limited conceptual and theoretical work to underpin policy and practice. Objective This article proposes a conceptual framework for patient and public involvement (PPI) and goes on to explore the different justifications for involvement and the implications of a rights-based rather than a regulatory approach. These issues are highlighted through exploring the particular evolution of English health policy in relation to PPI on the one hand and patient choice on the other before turning to similar patterns apparent in the United States and more broadly. Conclusions A framework for conceptualizing PPI is presented that differentiates between the different types and aims of involvement and their potential impact. Approaches to involvement are different in those countries that adopt a rights-based rather than a regulatory approach. I conclude with a discussion of the tension and interaction apparent in the globalization of both involvement and patient choice in both policy and practice.

Environmental law increasingly provides for participatory rights, including appeal rights, to ensure informed, legitimate decision-making. Despite consensus around the general need for participatory rights, including strong ones such as a right to appeal, public participation in environmental decision-making is often criticised. The critics' main argument is that the negative side effects resulting particularly from the use of strong participatory rights outweigh their benefits. Recent regulatory trends arising from better regulation policy to make environmental decision-making more cost-efficient tend to pay special attention to such arguments despite limited empirical evidence. This article provides evidence using material-concerning appeals against pollution permits in Finland and suggests that judicial review is a necessary and effective process for both protecting citizens' rights and improving the quality of environmental protection.

This paper considers the contemporary use of focus groups as a method of data collection within qualitative research settings. The authors draw upon their own experiences of using focus groups in educational and 'community' user-group environments in order to provide an overview of recent issues and debates surrounding the deployment of focus group methods and to pick out specific areas of contention in relation to both their epistemological and practical implications. Accordingly, the paper reflects on some of the realities of 'doing' focus groups whilst, at the same time, highlighting common problems and dilemmas which beginning researchers might encounter in their application. In turn, the paper raises a number of related issues around which there appears to have been a lack of academic discussion to date.

For 35 years, Arnstein's ladder of citizen participation has been a touchstone for policy makers and practitioners promoting user involvement. This article critically assesses Arnstein's writing in relation to user involvement in health drawing on evidence from the United Kingdom, the Netherlands, Finland, Sweden and Canada. Arnstein's model, however, by solely emphasizing power, limits effective responses to the challenge of involving users in services and undermines the potential of the user involvement process. Such an emphasis on power assumes that it has a common basis for users, providers and policymakers and ignores the existence of different relevant forms of knowledge and expertise. It also fails to recognise that for some users, participation itself may be a goal. We propose a new model to replace the static image of a ladder and argue that for user involvement to improve health services it must acknowledge the value of the process and the diversity of knowledge and experience of both health professionals and lay people.

This article explores the salience of disability theory for understanding the experiences of people with serious mental illness. Drawing on data from a focus group study, we suggest that users experience both impairment (as embodied irrationality) which can, in itself, be oppressive, and also have to manage their lives within a largely disabling society. We outline some of the strategies adopted by users to manage their situation and ensure they access and receive health services, and illustrate how these are a result of the complex relationship between disability and impairment. We suggest that using a framework of the social model of disability provides a useful way of understanding and making sense of the experience of users with serious mental illness.

This paper explores the results of a consensus development exercise that explored diverse perspectives and sought to identify key principles for the development of user involvement in a cancer network. The exercise took place within one of 34 UK cancer networks and was a collaboration between the NHS, two universities and two voluntary sector organizations. The paper explores professionals’ and users’ perspectives on user involvement with reference to the current sociopolitical context of user participation. British policy documents have placed increasing emphasis on issues of patient and public participation in the evaluation and development of health services, and the issue of lay participation represents an important aspect of a critical public health agenda. The project presented here shows that developing user involvement may be a complex task, with lack of consensus on key issues representing a significant barrier. Further, the data suggest that professional responses can partly be understood in relation to specific occupational standpoints and strategies that potentially allow professionals to define and limit users’ involvement. The implications of these findings and the impact of the consensus development process itself are discussed.

Recent UK government initiatives aim to increase user involvement in the National Health Service (NHS) in two ways: by encouraging service users to take an active role in making decisions about their own care; and by establishing opportunities for wider public participation in service development. The purpose of this study was to examine how UK cancer service users understand and relate to the concept of user involvement. The data were collected through in-depth interviews, which were analysed for content according to the principles of grounded theory. The results highlight the role of information and communication in effective user involvement. Perhaps more importantly, this study suggests that the concept of user involvement is unclear to many cancer service users. This paper argues the need for increased awareness and understanding of what user involvement is and how it can work.

Background. Schizophrenia affects up to 1% of the population in the UK. People with schizophrenia use the National Health Service frequently and over a long period of time. However, their views on satisfaction with primary care are rarely sought. Objectives. This study aimed to explore the elements of satisfaction with primary care for people with schizophrenia. Method. A primary care-based study was carried out using semi-structured interviews with 45 patients with schizophrenia receiving shared care with the Northern Birmingham Mental Health Trust between 1999 and 2000. Results. Five major themes that affect satisfaction emerged from the data: the exceptional potential of the consultation itself; the importance of aspects of the organization of primary care; the construction of the user in the doctor-patient relationship; the influence of stereotypes on GP behaviour; and the importance of hope for recovery. Conclusion. Satisfaction with primary care is multiply mediated. It is also rarely expected or achieved by this group of patients. There is a significant gap between the rhetoric and the reality of user involvement in primary care consultations. Acknowledging the tensions between societal and GP views of schizophrenia as an incurable life sentence and the importance to patients of hope for recovery is likely to lead to greater satisfaction with primary health care for people with schizophrenia.

This article explores the different ways that user experience is defined and conceptualized, and the various policy and professional contexts in which emphasis is placed on exploring users’ views. We go on to examine the experience of cancer as a chronic illness and argue that, although there are common features in the experience of cancer and people with chronic illness, the differences are too significant and cancer should not be defined as a chronic condition. We conclude with a consideration of the methodological difficulties of documenting user experience and identify the need for further methodological development.

This paper draws on contributions to and discussions at a recent MRC HSRC-sponsored workshop 'Researching users' experiences of health care: the case of cancer'. We focus on the methodological and ethical challenges that currently face researchers who use self-report methods to investigate experiences of cancer and cancer care. These challenges relate to: the theoretical and conceptual underpinnings of research; participation rates and participant profiles; data collection methods (the retrospective nature of accounts, description and measurement, and data collection as intervention); social desirability considerations; relationship considerations; the experiences of contributing to research; and the synthesis and presentation of findings. We suggest that methodological research to tackle these challenges should be integrated into substantive research projects to promote the development of a strong knowledge base about experiences of cancer and cancer care.

Recent developments in UK health policy seek to place the service user at the centre of service delivery, although user involvement is a complex and challenging process. This paper explores the contribution of interprofessional (IP) education to user involvement, focusing on education and training within a UK cancer network. The impact of participation in educational projects on users is explored and the benefits and limitations of IP education are discussed. Triangulation of data from several sources suggests that the contribution of IP education to user involvement is contingent on professional constructions, which include ethical positions that are related closely to issues of power and control. In particular, professional protectionism may represent an ongoing difficulty in user involvement research and development. The research suggests that without dedicated support and training, some professionals are unlikely to engage willingly with involving users in service development.

A ‘think piece’ in both style and content, this article offers some thoughts and reflections on selected themes and issues which, we believe, provide some important indicators not simply of the sociology of health and illness’ current status, but also of its future prospects. Four key themes have been chosen: (i) social inequalities in health; (ii) emotions and embodiment; (iii) (bio)technology, and finally; (iv) the shifting configuration of health care in Britain. Underlying these four themes, and running through the discussion as a whole, are two further key issues, namely, the contested nature of health and medical knowledge, and debates concerning consumption and risk in late modern society. The article concludes by suggesting that, in the era of the new genetics and the resurgence of biological explanations in the social and natural sciences, the charge of sociological imperialism constitutes both a constraint and opportunity for practitioners working in health and related fields.

In this article the authors report the findings of a study of satisfaction, dissatisfaction and complaining, funded by the National Health Service Executive (NHSE). Although interest in these issues has increased with the introduction of the Citizen's Charter Initiative and the continued growth of consumerism, few scholars have looked at the relationships between them. Satisfaction and dissatisfaction are commonly viewed as different facets of the same phenomenon. In turn, dissatisfaction is often understood to be a precursor to a complaint, or an embryonic one. The findings presented here suggest that satisfaction and dissatisfaction are linked but are essentially discrete constructs. The authors plot a variety of reactions to dissatisfaction and show that although excessive use is made of formal professional networks, few instances of dissatisfaction emerge as formal complaints. The article concludes that insufficient attention has been paid to understanding the everyday ways in which people cope with dissatisfaction and decisions not to voice a grievance.

Sponsored by ZonMw (The Netherlands Organisation for Health Research and Development) The Hague 11–12 April 2013

Patient and public involvement has been at the heart of UK health policy for more than two decades. This commitment to putting patients at the heart of the British National Health Service (NHS) has become a central principle helping to ensure equity, patient safety and effectiveness in the health system. The recent Health and Social Care Act 2012 is the most significant reform of the NHS since its foundation in 1948. More radically, this legislation undermines the principle of patient and public involvement, public accountability and returns the power for prioritisation of health services to an unaccountable medical elite. This legislation marks a sea-change in the approach to patient and public involvement in the UK and signals a shift in the commitment of the UK government to patient-centred care.

In responding to friction with mainstream society, minority groups follow a number of strategies ranging from accommodation to confrontation. This article examines the interaction between contemporary British society and two non‐Christian religions, the Anglo‐Jewish community and Sahaja Yoga. It notes that while these two groups are utterly different in most other respects, they pursue a similar strategy of adopting a low profile in relation to the larger culture. This strategy has the advantage of engendering the minimum amount of controversy and ensuring the greatest freedom of action possible, yet allowing them to maintain their distinctive religious identities. The article concludes with a discussion of the reasons why both groups adopt low, rather than high, profiles and of the ways in which such strategies may change over time.

Researching Education Policy: ethical and methodological issues David Halpin & Barry Troyna (Eds), 1994 London, Falmer Press