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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.

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.

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.

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.

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.

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 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.

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.

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

In health care, as in much of the public sphere, the voluntary sector is playing an increasingly large role in the funding, provision and delivery of services and nowhere is this more apparent than in cancer care. Simultaneously the growth of privatisation, marketisation and consumerism has engendered a rise in the promotion of 'user involvement' in health care. These changes in the organisation and delivery of health care, in part inspired by the 'Third Way' and the promotion of public and citizen participation, are particularly apparent in the British National Health Service. This paper presents initial findings from a three-year study of user involvement in cancer services. Using both case study and survey data, we explore the variation in the definition, aims, usefulness and mechanisms for involving users in the evaluation and development of cancer services across three Health Authorities in South West England. The findings have important implications for understanding shifts in power, autonomy and responsibility between patients, carers, clinicians and health service managers. The absence of any common definition of user involvement or its purpose underlines the limited trust between the different actors in the system and highlights the potentially negative impact of a Third Way health service.

User involvement has been a key part of government policy for a decade, but to what extent are users involved? From the Patient’s Charter [1] to NHS complaints systems, user involvement has been stressed as important. Yet the term ‘user involvement’ is itself not uncontested. For some it is the extent to which patients play an active role in decisions made about their care and treatment. For others the term refers to the inclusion of broader public ‘user’ input into planning decisions about the organization and delivery of NHS services. Even the most recent Department of Health publication refers to these two aspects as ‘a commitment to give people at a local level the power to make decisions about the range of services that are needed ..... This means giving patients more information, and encouraging healthcare professionals to treat patients as equal partners in the decision making process’ [2]. A key aspect of promoting this shift towards greater involvement, of both types, in the NHS has been through the Health in Partnership Policy Research Programme. This £2.5 million programme is ‘designed to inform understanding of the effect of user involvement in the NHS’ [3]. This Editorial presents an outline of current innovative research funded under this initiative that seeks to develop and evaluate existing approaches to involving users in cancer services. A 3-year project, ‘Developing and evaluating best practice for user involvement in cancer services’, was initiated in October 1999, based at Avon, Somerset and Wiltshire Cancer Services. (The research is directed by a project steering group, which includes N. Daykin (University of the West of England), J. McNeill (Cancerlink), S. Mitchard (Avon, Somerset and Wiltshire Cancer Services (ASWCS)), R. Newport (University of the West of England), J. Rimmer (ASWCS) and P. Turton (Bristol Cancer Help Centre), as well as the authors.) The project involves clinicians in the multidisciplinary teams, academics from the University of Warwick and the University of the West of England, Cancerlink and the Bristol Cancer Help Centre. We are investigating current