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Introduction: Disparities in the uptake of routine and COVID‐19 vaccinations have been observed in migrant populations, and attributed to issues of mistrust, access and low vaccine confidence. Participatory research approaches and behaviour change theory hold the potential for developing tailored vaccination interventions that address these complex barriers in partnership with communities and should be explored further. Methods: This study used a theory‐informed, community‐based participatory research approach to co‐design a culturally tailored behaviour change intervention aimed at increasing COVID‐19 vaccine uptake among Congolese migrants in London, United Kingdom (2021–2022). It was designed and led by a community‐academic partnership in response to unmet needs in the Congolese community as the COVID‐19 pandemic started. Barriers and facilitators to COVID‐19 vaccination, information and communication preferences, and intervention suggestions were explored through qualitative in‐depth interviews with Congolese migrants, thematically analysed, and mapped to the theoretical domains framework (TDF) and the capability, opportunity, motivation, behaviour model to identify target behaviours and strategies to include in interventions. Interventions were co‐designed and tailored in workshops involving Congolese migrants. Results: Thirty‐two Congolese adult migrants (24 (75%) women, mean 14.3 (SD: 7.5) years in the United Kingdom, mean age 52.6 (SD: 11.0) years) took part in in‐depth interviews and 16 (same sample) took part in co‐design workshops. Fourteen barriers and 10 facilitators to COVID‐19 vaccination were identified; most barrier data related to four TDF domains (beliefs about consequences; emotion; social influences and environmental context and resources), and the behavioural diagnosis concluded interventions should target improving psychological capability, reflective and automatic motivations and social opportunities. Strategies included culturally tailored behaviour change techniques based on education, persuasion, modelling, enablement and environmental restructuring, which resulted in a co‐designed intervention comprising community‐led workshops, plays and posters. Findings and interventions were disseminated through a community celebration event. Conclusions: Our study demonstrates how behavioural theory can be applied to co‐designing tailored interventions with underserved migrant communities through a participatory research paradigm to address a range of health issues and inequalities. Future research should build on this empowering approach, with the goal of developing more sensitive vaccination services and interventions which respond to migrant communities' unique cultural needs and realities. Patient or Public Contribution: Patient and public involvement (PPI) were embedded in the participatory study design and approach, with community members co‐producing all stages of the study and co‐authoring this paper. An independent PPI board (St George's Migrant Health Research Group Patient and Public Involvement Advisory Board) comprising five adult migrants with lived experience of accessing healthcare in the United Kingdom were also consulted at significant points over the course of the study. [ABSTRACT FROM AUTHOR]

Background: There have been recent important advances in conceptualizing and operationalizing involvement in health research and health ‐ care service development. However, problems persist in the field that impact on the scope for meaningful involvement to become a routine – normalized – way of working in primary care. In this review, we focus on current practice to critically interrogate factors known to be relevant for normalization – definition, enrolment, enactment and appraisal. Method: Ours was a multidisciplinary, interagency team, with community representation. We searched EBSCO host for papers from 2007 to 2011 and engaged in an iterative, reflexive approach to sampling, appraising and analysing the literature following the principles of a critical interpretive synthesis approach and using Normalization Process Theory. Findings: Twenty ‐ six papers were chosen from 289 papers, as a purposeful sample of work that is reported as service user involvement in the field. Few papers provided a clear working definition of service user involvement. The dominant identified rationale for enrolling service users in primary care projects was linked with policy imperatives for co ‐ governance and emancipatory ideals. The majority of methodologies employed were standard health services research methods that do not qualify as research with service users. This indicates a lack of congruence between the stated aims and methods. Most studies only reported positive outcomes, raising questions about the balance or completeness of the published appraisals. Conclusion: To improve normalization of meaningful involvement in primary care, it is necessary to encourage explicit reporting of definitions, methodological innovation to enhance co ‐ governance and dissemination of research processes and findings. [ABSTRACT FROM AUTHOR]

Aims and objectives This article considers evidence regarding lay involvement in the NHS, following the White Paper’s commitment to rebuild public confidence in an NHS ‘accountable to patients and open to the public and shaped by their views’. It looks at two aspects of lay involvement: the lay board member’s involvement in primary care group (PCG) decision-making and the engagement of the PCG with the wider public. Methods The paper analyses data from the first sweep of the annual Tracker Survey of a sample of PCGs in England, led by the National Primary Care Research and Development Centre in collaboration with the King’s Fund between September and December 1999. It draws specifically from the postal questionnaires sent to lay members. Firstly, however, it contextualizes this data by reviewing the history of lay involvement before 1997 in the NHS and particularly in primary care. Conclusions The paper concludes that, during the first 6 months of their operation, the lay voice was faintly heard in PCGs. The lay member’s role in decision-making at board-level was peripheral. The majority rated their involvement in key aspects of decision-making as low and their influence on decision-making below that of other board members including the Chief Officer, the chair and the GP board members. Beyond the arena of the board, what little contact there was with the lay voice has taken the shape of informing rather than consulting. Mitigating factors include the early stage at which the survey was completed and the lack of precedents for lay involvement in primary care in a broad sense on which PCGs can draw. [ABSTRACT FROM AUTHOR]

Objective To explore the roles of Patient Advice and Liaison Services (PALS) in their interactions with service users. Context Every National Health Service health-care provider in England now has a PALS, which provides service users with information and help in resolving concerns and dissatisfactions with health care. Design Longitudinal qualitative study, 2002–4. This paper draws on data from 27 semi-structured interviews. Setting and participants PALS personnel working in six case study PALS in London. Findings PALS personnel adopt seven roles in order to support their clients in sorting out problems with health care: information provider; listener; messenger (passing on information from service users to staff); go-between (passing information forward and back); supporter (helping service users to present their own views); mediator (when two or more parties are in dispute); resource mobilizer (when the support of senior staff or other agencies is necessary to resolve a problem). Conclusions Though these are not new functions, PALS is a universal service which is better placed than front-line health-care staff to offer such support, and increases choice for service users looking for sources of information and advice. [ABSTRACT FROM AUTHOR]

Background: Parent carers of disabled children are at increased risk of physical and mental health problems. The Healthy Parent Carers (HPC) programme is a manualised peer‐led group‐based programme that aims to promote parent carer health and wellbeing. Previously, the programme had been delivered in person, with recruitment and delivery managed in a research context. This study explored implementation by two delivery partner organisations in the United Kingdom. Facilitator Training and Delivery Manuals were modified for online delivery using Zoom due to COVID‐19. Methods: The study methodology utilised the Replicating Effective Programs framework. A series of stakeholder workshops informed the development of the Implementation Logic Model and an Implementation Package. After delivering the programme, delivery partner organisations and facilitators participated in a workshop to discuss experiences of implementing the programme. A wider group of stakeholders, including commissioners, Parent Carer Forums and charity organisations representatives and researchers subsequently met to consider the sustainability and potential barriers to delivering the programme outside the research context. Results: This study explored implementation by two delivery partner organisations in the United Kingdom that were able to recruit facilitators, who we trained, and they recruited participants and delivered the programme to parent carers in different localities using Zoom. The co‐created Implementation Logic Model and Implementation Package were subsequently refined to enable the further roll‐out of the programme with other delivery partner organisations. Conclusions: This study provides insight and understanding of how the HPC programme can be implemented sustainably outside of the research context. Further research will evaluate the effectiveness of the programme and refine the implementation processes. Patient and Public Contribution: Parent carers, delivery partner organisation staff and service commissioners were consulted on the design, delivery and reporting of the research. [ABSTRACT FROM AUTHOR]

The article presents a systematic narrative review aimed at examining qualitative studies focused on the experiences of patients of health-care services for multiple sclerosis (MS) in Great Britain. It says that studies primarily focused on diagnosis or palliative care, with themes including emotional experience of health care, continuity of care, and support from health-care professionals. It highlights the need for future research to explore the experiences of care after diagnosis.

Background It is good practice for the public to be involved in developing research ideas into grant applications. Some positive accounts of this process have been published, but little is known about when their reactions are negative and when researchers' ideas are abandoned. Objective To present a case study account of when an academic-led idea for funding was not supported by stroke survivors and carers who were asked to contribute to its development, together with a reflection on the implications of the case from all the stakeholders involved. Design A reflective case study of a research idea, developed by an academic researcher, on which stakeholders were consulted. Participants University researchers, clinicians, public involvement managers, and stroke survivors and carers from the NIHR's Stroke Research Network. Findings Although the idea met with the approval of health professionals, who were keen to develop it into a funding bid, the stroke survivors and carers did not think the idea worth pursuing. This lack of patient and carer support led to the idea being abandoned. Reflecting on this, those involved in the consultation believed that the savings accrued from abandoning the idea, in terms of ensuring that public money is not wasted, should be seen as an important benefit of public involvement in the research process. Conclusion Little is known about the role of the public in the abandonment of research ideas. We recommend that further research is undertaken into this important contribution that patients and the public can make to health research. [ABSTRACT FROM AUTHOR]

Objective The aim of this paper is to explore variations in lay perceptions of user involvement in clinical governance. Context The English National Health Service has sought to build a dependable health service through enhanced effectiveness, responsiveness and consistency. Clinical governance, a policy for improving service quality, is a key pillar of these reforms. It is a statutory duty of primary care organizations to ensure that users are involved in all service planning and decision making, including clinical governance. Yet surveys indicated that user involvement in clinical governance was underdeveloped and underutilized. Design Focus groups were conducted with different types of lay people to explore their perceptions around public involvement in different aspects of clinical governance policy. Results Content analysis of the transcripts reveals that different groups of lay people varied in their desired role perspective and preferred type of involvement in different aspects of clinical governance policy. Drawing upon existing models of user involvement, we identified three role perspectives that lay people could take in user involvement – consumer, advocate and citizen. We compared our findings regarding the desired type of involvement with existing models of user involvement, and identified a new type of involvement, overseeing, that is relevant to clinical governance policy. Conclusions These findings suggest that to facilitate user involvement in clinical governance, it would be necessary to use different strategies to accommodate the differing role perspectives and types of involvement desired by different groups of lay people. [ABSTRACT FROM AUTHOR]

Objective The publication of information about the performance of health-care providers is regarded as central to promoting greater accountability and empowering patients to exercise choice. The evidence suggests that the public is not very interested in accessing or using current sources of information. This study aimed to explore the information needs of patients in the context of UK primary care and to develop an information source about general practice services, designed to be usable by and useful to patients. Design An action research study making use of data from formal and informal interviews, focus groups, participant observation and document review. Setting The geographical areas covered by two Primary Care Trusts in the north of England and two Local Health Boards in south Wales. Participants A partnership between 103 members of the public, general practice staff from 19 practices, NHS managers from four Primary Care Organizations and the research team. Results The public would like to know more about the quality and range of general practice services but current sources of information do not meet their needs. The public do not like league tables comparing the performance of practices and only a small number of people want to use comparative information to choose between practices. They seem to be more interested in the context and availability of services and the willingness of practices to improve, than in the practice's absolute or relative performance. They want to be clear about the source of the information so that they can make personal judgements about its veracity. Information is most likely to be useful if it adheres to the basic principles of cognitive science in terms of its structure, content and presentation format. Using these findings, paper and electronic prototype versions of a guide to general practice services have been developed. Conclusions In order to maximize the potential use of performance information by the public it is necessary to move beyond provider-led and professionally constructed approaches to information provision and ensure that the public is actively involved in the development of information sources. Such involvement produces a different kind of information to that currently available to the public. The findings of this study have important implications for policy. Most importantly, it seems that the traditional consumerist model underlying a policy of making comparative performance information available to the public to enable them to exercise choice between primary care providers may not be appropriate. An alternative model of information provision, which recognizes the public's commitment to their practice and is integrated with ‘soft’ sources of knowledge is more likely to engage and be of use to the public. [ABSTRACT FROM AUTHOR]

Increasingly, lay people are appointed as members to health service committees. The term 'lay' is used loosely and the reasons for involving lay people are seldom clearly defined. This paper argues that the different roles that lay people play need to be explicitly defined in order for their contributions to be realized. Although lay members of health service committees are generally assumed to be working for patients' interests, our observations lead us to think that some lay people tend to support professionals' or managers' interests rather than patients' interests as patients would define them. We suggest that lay people fall into three broad categories: supporters of dominant (professional) interests, supporters of challenging (managerial) interests and supporters of repressed (patient) interests. These alignments should be taken into account in appointments to health service bodies. Further research is needed on the alignments and roles of lay members. [ABSTRACT FROM AUTHOR]

There is increasing interest, in the UK and elsewhere, in involving the public in health care priority setting. At the same time, however, there is evidence of lack of clarity about the objectives of some priority setting projects and also about the role of public involvement. Further, some projects display an apparent ignorance of both long-standing theoretical literature and practical experience of methodologies for eliciting values in health care and related fields. After a brief examination of the context of health care priority setting and public involvement, this paper describes a range of different approaches to eliciting values. These approaches are critically examined on a number of dimensions including the type of choice allowed to respondents and the implications of aggregation of values across individuals. Factors which affect the appropriateness of the different techniques to specific applications are discussed. A check-list of questions to be asked when selecting techniques is presented. [ABSTRACT FROM AUTHOR]

The article presents a qualitative analysis of the experiences of parents of health visiting outside the home and of children's centres services. It also examines the usefulness of relational autonomy in the understanding of the mechanisms of the family support. It suggests that health visiting outside the home and children's centres services can foster parental autonomy, particularly in relational terms.

The article compares the health care system of Great Britain and the U.S. It is based on a series of three British-American medical sociology conferences, the most recent of which was convened in Boston, Massachusetts. It is stated that for most Americans, health care is procured through employer-sponsored group insurance plans. Whereas, in Great Britain medical is governed by the National Health Service (NHS).

Background: Timeliness is viewed as a key feature of health‐care quality. Internationally, this is challenging. In England, cancer waiting time targets are currently not being met. For example, between 2015 and 2018 only 71% of patients with upper gastrointestinal (UGI) cancer started treatment within the recommended 62 days of referral. Objective: We explored patients' experiences to identify areas for service improvement. Design: Semi‐structured interviews were conducted. Setting and participants: Twenty patients who were referred through the urgent (two‐week) GP referral route and were within six months of receiving first treatment were recruited. Data analysis: Data from the interviews were analysed thematically. Results: Four themes were developed: organization of care; diagnosis; support; and views and expectations of the NHS. Patients described cross‐cutting issues such as complex and varied pathways and uncertainty about what would happen next. They felt daunted by the intensity and speed of investigations. They were presented with a recommended course of action rather than options and had little involvement in decision making. They were grateful for care, reluctant to complain and resigned to the status quo. Discussion and conclusions: In order to meet patient needs, the NHS needs to improve communication and streamline pathways. Future cancer pathways also need to be designed to support shared decision making, be truly person‐centred and informed by patient experience. [ABSTRACT FROM AUTHOR]

Background: Although many people are satisfied with their outcome after total knee replacement surgery for osteoarthritis, around 20% report chronic post‐surgical pain. People are often disappointed and unsure about whether their pain is normal and what can be done about it. Given the high prevalence of long‐term post‐operative pain after knee replacement, there is potentially a large hidden population with an unaddressed need for care. Objective: In this study, we focus on understanding why some people choose not to consult health care for chronic post‐surgical pain after knee replacement. Methods: Semi‐structured interviews were conducted with people who had received total knee replacement, at either of two National Health Service hospitals in the United Kingdom, and who had chronic post‐surgical pain (n = 34, age 55‐93 years). Data were audio‐recorded, transcribed and analysed thematically. Results: We found an overall sense of futility amongst participants who believed that nothing further could be done for their on‐going pain. People's perception of their pain was often discordant with that of surgeons and physicians. Other factors that contributed to decisions not to seek help included low expectations about effectiveness and the risks involved in further treatment, treatment burden, participants' prioritization of other health conditions and views about candidacy. Many accepted their on‐going pain. Conclusion: Our study indicates why some people with chronic pain after knee replacement do not seek further health care. Understanding patients' beliefs and expectations about chronic post‐surgical pain can inform approaches that might enable people to seek help in the future. [ABSTRACT FROM AUTHOR]

Background: Public involvement in the education of students enrolled on higher education programmes has gained impetus. For students enrolled on professional health‐care programmes and health‐related modules in the UK, there is also a requirement by professional bodies to include "service user" involvement in preparation for entry to a professional health‐care register and continuing professional development. Actively involving patients and members of the public in research is also a requirement by many research funders. In this article, the term Patient and Public Involvement (PPI) will be used throughout to include lay members, volunteers, user and carers. Objectives: A unique pilot study was introduced across a health faculty to integrate PPI in a deliberate way. It aimed to provide an educational, focused programme of events that was meaningful to develop and inform peoples' knowledge, skills and confidence for their involvement in the health faculty. Design: PPI members volunteered to sit on a steering group to determine the educational journey; the outcomes of three focus groups with PPI members (N = 32) and academics informed the programme content which included a range of workshops covering the exploration of public roles and barriers to involvement, introduction to research and interviewing skills. Results: The workshops were well attended, and outcomes indicated the importance of co‐production when designing, delivering and evaluating programmes. Discussion: Co‐production underpinned this pilot study, resulting in a programme which was meaningfully received by public contributors. Recommendations: Co‐production was seen as integral to this research to ensure that outcomes were indeed "fit for purpose". [ABSTRACT FROM AUTHOR]

Background: Increasing numbers of children with complex health‐care needs are cared for at home by their family. The aim of this qualitative study was to explore the challenges experienced by families caring for children who need complex medical care at home. Methods: We conducted a thematic analysis of eleven in‐depth interviews with parents who carry out specialist medical procedures (eg, enteral feeding, bowel washouts and tracheostomy care) for their children at home. Participants were purposely selected from an existing sample of interviews with parents whose child had abdominal surgery in the first year of life. Results: We identified three overarching themes: (a) responsibilities of the parent, (b) impact on daily life and (c) the parent journey over time. Parents have substantial responsibilities, including performing medical procedures, managing emergencies (sometimes life‐threatening), co‐ordinating care and advocating for their child. Their responsibilities have an enormous impact on the family: going out of the home becomes a challenge, there are constant constraints on time, parents are sleep‐deprived and there are wider impacts on siblings. The third theme explores the parent journey over time as parents become experts and make sense of the new normal. Discussion: The burden of care on families caring for children with complex medical needs is much greater than is generally understood by either multidisciplinary health‐care teams or the general public. Families need to be better prepared and supported for the responsibilities they take on and the burden of care needs to be shared by others. [ABSTRACT FROM AUTHOR]

Background: Patients are increasingly recognized as playing important roles in improving health services. Little is known about the mechanisms by which patients develop and diffuse local innovations in a complex health‐care system. Objective: To ascertain how diffusion of an innovation, My Medication Passport, occurred and roles played by patients in it. Design: Case study: quantitative mapping of innovation's diffusion and analysis of the routes and occupations of those through whom the innovation spread; documentary analysis; reflective assessment of patient's roles. Setting and participants: NHS Trusts, third sector organizations, patients and health‐care professionals. Interventions studied: Co‐produced action to raise awareness and influence use of the innovation; order database which enabled ease of access to the innovation. Main outcome measures: Geographical spread of innovation; occupations of individuals; types of organizations using the innovation. Results: The innovation spread from initial development and use in Northwest London across the UK and beyond. Key roles played by patients were as follows: co‐producer; advocate; relationship builder; relationship broker; planner; presenter; awareness raiser; trainer; networker. Patients identified and introduced potential audiences and users to MMP, using social, organizational, sectoral, lay and professional networks to do so. They organized a range of awareness‐raising and communication activities, monitored feedback, evaluated the impact and responded to new interest. Discussion and conclusions: The roles of patients in diffusing innovations are under‐recognized. Collaborative working between patients, carers and health‐care professionals in planning and progressing the use and supporting diffusion of the innovation was important. Principles described in this study are relevant to progressing other patient‐led ideas for innovative changes relating to health service development. [ABSTRACT FROM AUTHOR]

An introduction is presented in which the editor discusses articles in the issue on topics including health care, health service development, and shared decision making (SDM).

The article discusses papers published within the issue, including one a model for the stages of patients and service user involvement and engagement, another on service user involvement in research and service development, and lastly on the involvement of patients in a feasibility study using a patient panel approach.

Background: The PRASE (Patient Reporting and Action for a Safe Environment) intervention provides a way to systematically collect patient feedback to support service improvement. To provide a sustainable mechanism for the PRASE intervention, a 2‐year improvement project explored the potential for hospital volunteers to facilitate the collection of PRASE feedback. Objective: To explore the implementation of the PRASE intervention delivered in collaboration with hospital volunteers from the perspectives of key stakeholders. Design: A qualitative case study design was utilized across three acute NHS trusts in the United Kingdom between March 2016 and October 2016. Ward level data (staff interviews; action planning meeting recordings; implementation fidelity information) were analysed taking a pen portrait approach. We also carried out focus groups with hospital volunteers and interviews with voluntary services/patient experience staff, which were analysed thematically. Results: Whilst most ward staff reported feeling engaged with the intervention, there were discordant views on its use and usefulness. The hospital volunteers were positive about their involvement, and on some wards, worked with staff to produce actions to improve services. The voluntary services/patient experience staff participants emphasised the need for PRASE to sit within an organisations' wider governance structure. Conclusion: From the perspective of key stakeholders, hospital volunteers facilitating the collection of PRASE feedback is a feasible means of implementing the PRASE intervention. However, the variability around ward staff being able to use the feedback to make changes to services demonstrates that it is this latter part of the PRASE intervention cycle that is more problematic. [ABSTRACT FROM AUTHOR]

Abstract: Background: Person Centred Coordinated Care (P3C) is a UK priority for patients, carers, professionals, commissioners and policy makers. Services are developing a range of approaches to deliver this care with a lack of tools to guide implementation. Methodology: A scoping review and critical examination of current policy, key literature and NHS guidelines, together with stakeholder involvement led to the identification of domains, subdomains and component activities (processes and behaviours) required to deliver P3C. These were validated through codesign with stakeholders via a series of workshops and cognitive interviews. Results: Six core domains of P3C were identified as follows: (i) my goals, (ii) care planning, (iii) transitions, (iv) decision making (v), information and communication and (vi) organizational support activities. These were populated by 29 core subdomains (question items). A number of response codes (components) to each question provide examples of the processes and activities that can be actioned to achieve each core subdomain of P3C. Conclusion: The P3C‐OCT provides a coherent approach to monitoring progress and supporting practice development towards P3C. It can be used to generate a shared understanding of the core domains of P3C at a service delivery level, and support reorganization of care for those with complex needs. The tool can reliably detect change over time, as demonstrated in a sample of 40 UK general practices. It is currently being used in four UK evaluations of new models of care and being further developed as a training tool for the delivery of P3C. [ABSTRACT FROM AUTHOR]

Measuring clinicians' shared decision‐making (SDM) performance is a key requirement given the intensity of policy interest in many developed countries – yet it remains one of the most difficult methodological challenges, which is a concern for many stakeholders. In this Viewpoint Article, we investigate the development of existing patient‐reported measures (PRMs) of SDM identified in a recent review. We find that patients were involved in the development of only four of the 13 measures. This lack of patient involvement in PRM development is associated with two major threats to content validity, common to all 13 PRMs of SDM: (i) an assumption of patient awareness of ‘decision points’ and (ii) an assumption that there is only one decision point in each healthcare consultation. We provide detailed examples of these threats and their impact on accurate assessment of SDM processes and outcomes, which may hamper efforts to introduce incentives for SDM implementation. We propose cognitive interviewing as a recommended method of involving patients in the design of PRMs in the field of SDM and provide a practical example of this approach. [ABSTRACT FROM AUTHOR]

Background: Measuring patients’ experiences to determine health ‐ care performance and quality of care from their perspective can provide valuable evidence for international improvements in the quality of care. We compare patients’ experiences in Accident & Emergency departments (A&E) in England and the Netherlands and discuss the usefulness of this comparison. Methods: A cross ‐ sectional survey was conducted among patients attending A&Es aged 18 years and older. In England, 134 A&Es were surveyed. In the Netherlands, nine hospitals participated in the study. Main outcome measures were patients’ experiences represented by six domain scores aggregated on the country level or on the A&E level. Results: In England, 43 892 completed questionnaires were received (40%). In the Netherlands, 1865 completed questionnaires were received (42%). Three of six domain scores were significantly higher for patients in the Netherlands: ‘waiting time’ [mean scores of 73.8 (NL) versus 67.2 (ENG)], ‘doctors and nurses’ [mean scores of 85.7 (NL) versus 80.6 (ENG)] and ‘your care and treatment’ [mean scores of 82.6 (NL) and 80.2 (ENG)]. The variance among the English A&Es was large. The best and worst practices on five domains were English. Conclusions: The mean quality of care in the A&E appeared to be better in the Netherlands on three domains, but the best practices were English A&Es. The within ‐ country differences between A&Es were much larger than differences between countries. Healthcare performance in the A&E can be compared between countries by surveying patients’ experiences, and there seems much to learn across A&Es both within and among countries. [ABSTRACT FROM AUTHOR]

Background: A study of involvement initiatives within secure mental health services across one UK region, where these have been organized to reflect alliances between staff and service users. There is little previous relevant international research, but constraints upon effective involvement have been noted. Objective: To explore and evaluate involvement initiatives in secure mental health settings. Design: A case study design with thematic analysis of qualitative interviews and focus groups. Setting and participants: Data collection was carried out between October 2011 and February 2012 with 139 staff and service users drawn from a variety of secure mental health settings. Findings: Our analysis offers four broad themes, titled: safety and security first?; bringing it all back home; it picks you up; it's the talk. The quality of dialogue between staff and services users was deemed of prime importance. Features of secure environments could constrain communication, and the best examples of empowerment took place in non ‐ secure settings. Discussion: Key aspects of communication and setting sustain involvement. These features are discussed with reference to Jurgen Habermas's work on communicative action and deliberative democracy. Conclusions: Involvement initiatives with service users resident in secure hospitals can be organized to good effect and the active role of commissioners is crucial. Positive outcomes are optimized when care is taken over the social space where involvement takes place and the process of involvement is appreciated by participants. Concerns over risk management are influential in staff support. This is germane to innovative thinking about practice and policy in this field. [ABSTRACT FROM AUTHOR]

Background: The policy imperative to engage the public and patients in research can be seen as part of a wider shift in the research environment. This study addresses the question: Has there been a shift in attitudes to Patient and Public Involvement (PPI) and Public Engagement in Science (PES) amongst researchers? Methods: Attitudes to PPI and PES within a cluster of three NIHR supported Biomedical Research Centres were explored through in ‐ depth interviews with 19 researchers. Results: Participants distinguished PPI (as an activity involving patients and carers in research projects and programmes) from PES (as an activity that aims to communicate research findings to the public, engage the public with broader issues of science policy or promote a greater understanding of the role of science in society). While participants demonstrated a range of attitudes to these practices, they shared a resistance to sharing power and control of the research process with the public and patients. Conclusion: While researchers were prepared to engage with the public and patients and listed the advantages of engagement, the study revealed few differences in their underlying attitudes towards the role of society in science (and science in society) to those reported in previous studies. To the participants science remains the preserve of scientists, with patients and the public invited to ‘tinker at the edges’. [ABSTRACT FROM AUTHOR]

Background: Health outcomes for long‐term conditions (LTCs) can be improved by lifestyle, dietary and condition management‐related behaviour change. Primary care is an important setting for behaviour change work. Practitioners have identified barriers to this work, but there is little evidence examining practices of behaviour change in primary care consultations and how patients and practitioners perceive these practices. Objective: To examine how behaviour change is engaged with in primary care consultations for LTCs and investigate how behaviour change is perceived by patients and practitioners. Design: Multiperspective, longitudinal qualitative research involving six primary health‐care practices in England. Consultations between patients with LTCs and health‐care practitioners were audio‐recorded. Semi‐structured interviews were completed with patients and practitioners, using stimulated recall. Patients were re‐interviewed 3 months later. Framework analysis was applied to all data. Participants: Thirty‐two people with at least one LTC (chronic obstructive pulmonary disease, diabetes, asthma and coronary heart disease) and 10 practitioners. Results: Behaviour change talk in consultations was rare and, when it occurred, was characterized by deflection and diffidence on the part of practitioners. Patient motivation tended to be unaddressed. While practitioners positioned behaviour change work as outside their remit, patients felt uncertain about, yet responsible for, this work. Practitioners raised concerns that this work could damage other aspects of care, particularly the patient–practitioner relationship. Conclusion: Behaviour change work is often deflected or deferred by practitioners in consultations, who nevertheless vocalize support for its importance in interviews. This discrepancy between practitioners’ accounts and behaviours needs to be addressed within primary health‐care organizations. [ABSTRACT FROM AUTHOR]

The article presents a cross-sectional qualitative focus group study on how patients respond to telephone access barriers to care, providing recommendations for system improvement within a large integrated health-care system. It suggests that telephone access barriers could lead to increased patient harm and/or increased wait times for emergency services or in-person primary care, highlighting the need for periodic evaluation of telephone systems to reduce such barriers.

The article discusses how the health consumer and patients' organizations (HCPOs) in Great Britain have been influenced by the changes in policy and political environment, focusing on the threats and opportunities for HCPOs. It suggests that the developments presented both opportunities and challenges for HCPOs while seeking to influence policy, which include the promotion of choice and competition in public services, austerity measure and the British National Health Service (NHS) reform.

Background: The involvement of patient representatives in health technology assessment is increasingly seen by policy makers and researchers as key for the deployment of patient‐centred health care, but there is uncertainty and a lack of theoretical understanding regarding the knowledge and expertise brought by patient representatives and organisations to HTA processes. Objective: To propose a conceptually‐robust typological model of the knowledge and expertise held by patient organisations. Design, data collection and analysis: The study followed a case‐study design. Data were collected within an international research project on patient organisations' engagement with knowledge, and included archival and documentary data, in‐depth interviews with key members of the organisation and participant observation. Data analysis followed standard procedure of qualitative analysis anchored in an analytic induction approach. Results: Analysis identified three stages in the history of the patient organisation under analysis – Alzheimer's Society. In a first period, the focus is on ‘caring knowledge’ and an emphasis on its volunteer membership. In a transition stage, a combination of experiential, clinical and scientific knowledge is proposed in an attempt to expand its field of activism into HTA. In the most recent phase, there is a deepening of its network of associations to secure its role in the production of evidence. Conclusions: Analysis identified an important relationship between the forms of knowledge deployed by patient organisations and the networks of expertise and policy they mobilise to pursue their activities. A model of this relationship is outlined, for the use of further research and practice on patient involvement. [ABSTRACT FROM AUTHOR]

The article focuses on the study on the benefits, economic impact, and costs associated to patient and public involvement (PPI) in health policy and patient-focused health-care system. Methods were designed to measure the potential benefits of PPI including national health service (NHS) governance, designing of projects, and implementation. Results were outlined and conclude the advantages of recognizing the costs of PPI on the effective planning, execution, and evaluating organization.

Background: Despite widespread adoption of patient feedback surveys in international health‐care systems, including the English NHS, evidence of a demonstrable impact of surveys on service improvement is sparse. Objective: To explore the views of primary care practice staff regarding the utility of patient experience surveys. Design: Qualitative focus groups. Setting and participants: Staff from 14 English general practices. Results: Whilst participants engaged with feedback from patient experience surveys, they routinely questioned its validity and reliability. Participants identified surveys as having a number of useful functions: for patients, as a potentially therapeutic way of getting their voice heard; for practice staff, as a way of identifying areas of improvement; and for GPs, as a source of evidence for professional development and appraisal. Areas of potential change stimulated by survey feedback included redesigning front‐line services, managing patient expectations and managing the performance of GPs. Despite this, practice staff struggled to identify and action changes based on survey feedback alone. Discussion: Whilst surveys may be used to endorse existing high‐quality service delivery, their use in informing changes in service delivery is more challenging for practice staff. Drawing on the Utility Index framework, we identified concerns relating to reliability and validity, cost and feasibility acceptability and educational impact, which combine to limit the utility of patient survey feedback. Conclusions: Feedback from patient experience surveys has great potential. However, without a specific and renewed focus on how to translate feedback into action, this potential will remain incompletely realized. [ABSTRACT FROM AUTHOR]

Background: Lay involvement in implementation of research evidence into practice may include using research findings to guide individual care, as well as involvement in research processes and policy development. Little is known about the conditions required for such involvement. Aim: To assess stroke survivors’ research awareness, use of research evidence in their own care and readiness to be involved in research processes. Methods: Cross sectional survey of stroke survivors participating in population‐based stroke registers in six European centres. Results: The response rate was 74% (481/647). Reasons for participation in register research included responding to clinician request (56%) and to ‘give something back’ (19%); however, 20% were unaware that they were participating in a stroke register. Research awareness was generally low: 57% did not know the purpose of the register they had been recruited to; 73% reported not having received results from the register they took part in; 60% did not know about any research on stroke care. Few participants (7.6%) used research evidence during their consultations with a doctor. The 34% of participants who were interested in being involved in research were younger, more highly educated and already research aware. Conclusions: Across Europe, stroke survivors already participating in research appear ill informed about stroke research. Researchers, healthcare professionals and patient associations need to improve how research results are communicated to patient populations and research participants, and to raise awareness of the relationship between research evidence and increased quality of care. [ABSTRACT FROM AUTHOR]

The article presents the quantitative research that explores on the limitations of specialist health service for adults suffering from intellectual disabilities in Great Britain. The topics discussed include the effectiveness of the Delphi study in quantifying the diverse ideas of stakeholder groups, and comparison between the quality of services provided by specialist and specialist health services.

Background The British National Health Service has undergone significant restructuring in recent years. In England this has taken a distinctive direction where the New Labour Government has embraced and intensified the influence of market principles towards its vision of a ‘modernized’ NHS. This has entailed the introduction of competition and incentives for providers of NHS care and the expansion of choice for patients. Objectives To explore how users of the NHS perceive and respond to the market reforms being implemented within the NHS. In addition, to examine the normative values held by NHS users in relation to welfare provision in the UK. Design and setting Qualitative interviews using a quota sample of 48 recent NHS users in South East England recruited from three local health economies. Results Some NHS users are exhibiting an ambivalent or anxious response to aspects of market reform such as patient choice, the use of targets and markets and the increasing presence of the private sector within the state healthcare sector. This has resulted in a sense that current reforms, are distracting or preventing NHS staff from delivering quality of care and fail to embody the relationships of care that are felt to sustain the NHS as a progressive public institution. Conclusion The best way of delivering such values for patients is perceived to involve empowering frontline staffs who are deemed to embody the same values as service users, thus problematizing the current assumptions of reform frameworks that market-style incentives will necessarily gain public consent and support. [ABSTRACT FROM AUTHOR]

Objective Current government policies simultaneously pursue the development of ‘patient-led’ and ‘evidence-based’ approaches to healthcare. The objective of this study was to explore how primary care clinicians and Primary Care Trust (PCT) managers balance these potentially competing tensions when considering popular, controversial treatments, like complementary therapies, in consultations (clinicians) or funding decisions (PCT managers). Setting and participants We selected two case sites where complementary therapies were offered on NHS premises in England. We interviewed 18 PCT managers and clinicians, conducted an observation of a PCT meeting on complementary therapies and collected documentary data from referral databases and service funding bids. All interviews were taped, transcribed and analysed thematically. Interview, observation and documentary data were used to compare reported beliefs and behaviour to observed and documented behaviour. Results The majority of clinicians and PCT managers claimed that research evidence guided their decisions; those who did not felt increasingly marginalized. However, discrepancies between reported and observed behaviour suggest that perceptions of research evidence, rather than fact based knowledge, predominated when considering complementary therapies. Conclusion In the case of NHS complementary therapy service provision, patient preference may be largely insignificant in clinician and PCT managerial decisions, with decisions based mainly on ‘evidence rhetoric’ devised from collectively agreed, unchallenged, tacit perceptions of research literature. If a patient-led NHS is to become a reality, NHS professionals need to cede the power that they wield with evidence rhetoric and acknowledge the legitimacy of patient preferences, views and alternative sources of evidence. [ABSTRACT FROM AUTHOR]

Context and Thesis Changing patient and public involvement (PPI) policies in England and Wales are analysed against the background of wider National Health Service (NHS) reforms and regulatory frameworks. We argue that the growing divergence of health policies is accompanied by a re-positioning of the state vis-à-vis PPI, characterized by different mixes of centralized and decentralized regulatory instruments. Method Analysis of legislation and official documents, and interviews with policy makers. Findings In England, continued hierarchical control is combined with the delegation of responsibilities for the oversight and organization of PPI to external institutions such as the Care Quality Commission and local involvement networks, in support of the government’s policy agenda of increasing marketization. In Wales, which has rejected market reforms and economic regulation, decentralization is occurring through the use of mixed regulatory approaches and networks suited to the small-country governance model, and seeks to benefit from the close proximity of central and local actors by creating new forms of engagement while maintaining central steering of service planning. Whereas English PPI policies have emerged in tandem with a pluralistic supply-side market and combine new institutional arrangements for patient ‘choice’ with other forms of involvement, the Welsh policies focus on ‘voice’ within a largely publicly-delivered service. Discussion While the English reforms draw on theories of economic regulation and the experience of independent regulation in the utilities sector, the Welsh model of local service integration has been more influenced by reforms in local government. Such transfers of governance instruments from other public service sectors to the NHS may be problematic. [ABSTRACT FROM AUTHOR]

Introduction Joseph Heller’s Catch-22 is regularly invoked to critique the irrationality inherent in supposedly rational bureaucracy. We explore a Catch-22 for policy concerning public involvement in English health care: you have to be ordinary to represent the community effectively, but, if you are ordinary, you cannot effectively represent your community. The nature of public participation groups Starting with community health councils, we trace government policy about involving local people in health care, up to the current arrangements for local involvement networks and show how the above Catch-22 works. We do this in two principal ways. First, by an analysis of some of the unrecognized paradoxes in current government policies designed to populate health-care participation groups and second, by providing a series of narrative vignettes, drawn from our own experiences of working in such groups, which illustrate the nature of the dilemmas members face. Conclusions Our proposal to get out of the worst of the Catch-22 for effective public involvement groups is (paradoxically) to suggest focusing less on effectiveness, or more precisely, focusing less on those conventional, managerially defined notions of effectiveness that are now pretty much taken for granted within public services. This is because, if bodies like LINks are to do more than provide unthreatening, homogenous and tokenistic public perspectives, they need to be given space and time to pursue their own agendas. [ABSTRACT FROM AUTHOR]

Introduction Patient and public involvement is the cornerstone of the ‘patient-led’ National Health Service (NHS). Though the UK has had state sponsored arrangements for patient and public involvement since 1974, they have become fragmented and unstable. Patients’ forums and the Commission for Patient and Public Involvement in Health replaced community health councils (CHCs) and their national association in England in 2003, but now will be replaced by local involvement networks (LINks) and the Commission will be abolished in 2007. Learning from history This study provides an overview of research on the effectiveness of arrangements for patient and public involvement and reviews the debates about accountability, independence, ensuring consistency of performance, representation and how arrangements for the NHS fit within the wider agenda of citizenship and renewal of democracy. It explores key themes and areas for learning to inform the debate about how LINks might work effectively to improve the health of local people, in particular addressing issues of equity, representation and citizen engagement. Conclusions The proposed LINks provide the opportunity to integrate patient and public involvement into wider initiatives for local democracy and citizen engagement. But debates and key issues about user and public involvement in the 1970s remain current and unresolved. If the new LINks are to succeed where forums and CHCs are considered to have failed, the strengths and weakness of both need to be understood and addressed. [ABSTRACT FROM AUTHOR]

The article presents information related to the patient information service in Great Britain. The responsibilities of patient information service include supporting clinical governance and selecting high quality external sources of patient information. The British National Health Service Plan signalled a radical shift in health care strategy with a commitment to build health care services around the needs of patients.

Objective To explore the process of public involvement in planning primary health care. Background Recent policy in the UK promotes public involvement in planning health but there have been difficulties in engaging communities in the process. Surveys of health service organizations have found that there has been a failure to adapt to new approaches. It has become important to understand why this has occurred if policy initiatives to encourage involvement are to succeed. Design Qualitative study. Data collected through individual interviews and focus groups. Setting Two new primary healthcare developments in deprived areas in Bristol and Weston-Super-Mare. Participants Thirty-six professionals and 23 local residents in Bristol; six professionals and three local residents in Weston-Super-Mare. Results Three themes were identified: process, partnership and power. The main findings were that exceptional people with a shared commitment to public involvement were necessary to motivate others and develop partnerships. Local people were drawn into the process and with increased confidence became powerful advocates for their community. Creative and varied methods to involve the public were important in achieving balance between professionals and lay people. However, conflicts over practical decisions arose from a lack of clarity over who had power to influence decisions. Conclusion Most of the participants were enthusiastic about their experience of public involvement in planning primary health care. Features crucial to sustainable involvement included a commitment from leaders within statutory agencies, support over a long period to build the confidence of local people, willingness to use informal approaches that are in tune with local culture, and a recognition of the concerns of both service users and providers. [ABSTRACT FROM AUTHOR]

Objective To determine patient perceptions of joint teleconsultations (JTC), with particular reference to reasons underlying, and factors contributing to, patient satisfaction and dissatisfaction with this mode of health delivery. Background Telemedicine has been welcomed as one way of improving health-care delivery, by improving patient access to secondary care and specialist services hence widening patient choice, particularly for patients outside major conurbations. However, a recent systematic review found currently available data on patient satisfaction with telemedicine to be methodologically flawed. Qualitative evaluations offer the opportunity to elucidate the details of patient satisfaction with this mode of health-care delivery. Design Qualitative study using semi-structured interviews. Setting and participants Purposive sample of 28 participants of a major randomized controlled trial (Virtual Outreach study) of JTC conducted in one urban and one rural area in Britain. Intervention Joint teleconferenced consultations with the patient, patient's general practitioner (GP), and a hospital specialist. The patient and GP were sited in the local practice, while the hospital specialist was in the hospital outpatient department, and the two parties were connected by an ISDN2 link and video-conferencing software. Main outcome measures Patient experiences of JTC, with particular reference to reasons underlying, and factors contributing to, overall satisfaction or dissatisfaction. Results Two major themes were identified: customer care and doctor–patient interaction. Patients appreciated the customer care aspects of JTC, particularly the enhanced convenience, reduced costs and improved punctuality associated with JTC. However, there were divergent views about the doctor–patient interactions with some patients expressing a sense of alienation arising from the use of technology, and problems with doctor–patient communication. Conclusions These data add significantly to the existing literature on patient satisfaction with telemedicine, by elucidating the factors underlying overall satisfaction scores and hence have implications for future service delivery and implementation of telemedicine. [ABSTRACT FROM AUTHOR]

Objectives The objective of this study was to identify what children and young people in a health district in a large urban area experience as positive - and not so positive - about their local health services, in the light of a growing expectation that users play a more central role in the design and delivery of services. Design A qualitative study incorporating a range of methods, including interviews, play techniques and a Web site. Setting Schools, nurseries, community groups, in- and outpatient settings in an inner London health authority. Participants Young people aged between 4 and 19 years, from community (n = 92) and clinical (n = 57) settings. This included 'hard-to-reach' children, including those leaving care, those in touch with the criminal justice system, asylum seekers, and those with learning disabilities. Results Alongside planning and environment issues, young people particularly emphasized the impact of communication and relationships with staff on their experience of health services. Discussion and conclusions Using a range of flexible and age- appropriate techniques, young people, even those as young as 4 or 5, are able to comment helpfully on their experiences of service provision. What children had to say is revealing but not astonishing to those working in the National Health Service (NHS). Clinicians and managers, to whom our findings were fed back, made this clear. If we have known for so long that the issues raised here are problems, why are we so poor at acting on this knowledge? The authors suggest four explanations. [ABSTRACT FROM AUTHOR]

To look at the preparations being made for the introduction of scrutiny of local health services by social service local authorities. A baseline postal survey carried out in late 2002 of all social service local authorities in England. Against a backdrop of changing structures and policy, both within local government and the National Health Service (NHS) in England and before the official introduction of health scrutiny in January 2003. Survey from the local authority perspective. Progress is being made in the implementation of this new policy, and many local authorities have already carried out pilot scrutiny exercises of local health provision. The survey highlights the different approaches authorities are taking to initiate implementation of health scrutiny and the importance of support, in terms of resources, guidance and training, for overview and scrutiny to be successful. Further evaluation of the implementation of health scrutiny is required to examine the impact on local governance of the NHS and partnership working. [ABSTRACT FROM AUTHOR]

To investigate the perceptions and attitudes of patients to the built environments of NHS Trust hospitals, in order to inform design excellence so as to make future hospitals places and spaces responsive to patient needs. An exploratory study of patients perceptions based on qualitative semi-structured personal interviews. Fifty one-to-one interviews held with hospital in-patients across the four directorates of surgery, medicine, care of the elderly and maternity at Salford Royal Hospitals NHS Trust, Salford, UK. The research found that there was much similarity in the priorities, issues and concerns raised by patients in each of the four directorates. Patients perceived the built environment of the hospital as a supportive environment. Their accounts in each area pointed to the significance of the factors that immediately impacted on them and their families. Patients identified having a need for personal space, a homely welcoming atmosphere, a supportive environment, good physical design, access to external areas and provision of facilities for recreation and leisure. Responses suggest that patient attitudes and perceptions to the built environment of hospital facilities relates to whether the hospital provides a welcoming homely space for themselves and their visitors that promotes health and wellbeing. The findings have important implications for capital development teams, clinical staff, managers and NHS Estates personnel. Although the study has immediate relevance for Salford Royal Hospitals Trust, findings and recommendations reported provide NHS Estates and other relevant stakeholders with evidence-based knowledge and understanding of patients’ perceptions and expectations of and preferences for particular facilities and estates provision in NHS hospitals. [ABSTRACT FROM AUTHOR]

A narrative account, from a user’s perspective, of NHS service and procedures. Whilst there is much to applaud in the service and communications between staff and patients, some practices do not foster patient empowerment. [ABSTRACT FROM AUTHOR]

Decision aids for health service users facing decisions about screening have been developed for controversial tests (such as that for prostate specific antigen as a screen for prostate cancer) and tests in which outcomes are value laden (as in some prenatal tests). The potential usefulness of decision aids in established screening programmes (such as those offering mammography to women over 50 in the United Kingdom) remains to be explored. In principle any decision about screening test acceptance may be sensitive to individual preferences and could be supported by an appropriate decision aid. Decision aids might also help reduce some of the problems currently associated with public misconceptions about screening. Objections to the promotion of individual choice regarding screening tests usually take the form of concern that this will lead to unacceptable losses in terms of population health gain and health system efficiency, or of fear that individuals will choose options that are wrong for them. The introduction of decision aids could alleviate both of these objections to some extent. Decision aids could encourage people to consider the social as well as the individual consequences of their choices and they should promote choices consistent with personal values. Although there are strong arguments in principle for introducing decision aids into established screening programmes, their potential needs to be confirmed in empirical evaluations and there may be many contentious decisions and practical challenges to be overcome in order to implement them. [ABSTRACT FROM AUTHOR]

Objective First-hand accounts of illness experience are believed to provide important insights for other patients and their carers. We report the results of a survey that explored how patients’ stories are being collected and used by self-help and voluntary groups. Methods The annual College of Health survey contacts 2 458 addresses, which includes many self-help groups and voluntary associations. A brief questionnaire for the self-help groups on the register was attached to the summer 1999 survey on behalf of the DIPEx (database of individual patient experience) project. Results DIPEx received replies from 309 organizations representing a wide range of interests and conditions. These indicated that 202 (65%) of the groups currently use patients’ stories in various ways. A further 59 (19%) of the groups reported that although they are not currently using them, they would like to in the future. Organizations that use patients’ stories were invited to describe how they use them and provide examples, if applicable. Content analysis of the free text descriptions revealed 22 distinct uses among the 202 organizations using patient stories. The most frequent uses are the inclusion of patient stories in interviews or articles for the group newsletter (74 or 37%) and the use of stories for inclusion in newspaper articles or media broadcasts (31 or 15%). Some form of database of patients’ stories was maintained by 23 groups (12%). Conclusions These findings suggest that patients’ stories are widely collected and used to support a wide range of the recognized functions of self-help and voluntary groups. This is encouraging to the DIPEx project’s efforts to collect and analyse accounts of illness experience, which will be presented with evidence-based information about the effects of treatments. [ABSTRACT FROM AUTHOR]

The case of Jaymee Bowen (child B) illustrated the conflict that may arise over treatment decisions in the National Health Service (NHS). This article reviews four further cases involving disagreement between patients and families on the one hand, and health authorities on the other, and a fifth case in which a health authority questioned the treatment decision of a medical specialist. The cases illustrate the rise of consumerism in health care and the challenge for health authorities in weighing the claims of individual patients against the needs of communities. They also demonstrate the increasing role of lawyers and the courts in resolving disputes over treatment decisions. Clinicians were closely involved in all cases, both in recommending treatment options and in serving as independent advisers when disputes arose. The findings presented here indicate that there is a need to strengthen the process of decision-making in cases of this kind and to make greater use of evidence in informing decisions. In future, decision-making needs to be characterized by openness, reason giving, an appeals procedure and regulation of the process to ensure that these conditions are met. The funders of health care also need to consider each individual in his or her own right while also using their resources for the benefit of the population as a whole. [ABSTRACT FROM AUTHOR]

Background Public involvement in health care decision making and priority setting in the UK is being promoted by recent policy initiatives. In 1993, the British Medical Association called for public consultation where rationing of services was to be undertaken. The approach to priority setting advocated by many health economists is the maximization of quality adjusted life years (QALYs). Typically, for a particular health care programme, the QALY calculation takes account of four features: (1) the number of patients receiving the programme, (2) the survival gain, (3) the gain in quality of life and, (4) the probability of treatment success. Only one feature, that relating to quality of life, is based upon public preferences. If the QALY is to be used as a tool for health care resource allocation at a societal level then it should incorporate broader societal preferences. Methods This study used an interview-based survey of 91 members of the general public to explore whether the traditional QALY maximization model is a good predictor of public responses to health care priority setting choices. Results and conclusions Many respondents did not choose consistently in line with a QALY maximization objective and were most influenced by quality of life concerns. There was little support for health care programmes that provided a prognostic improvement but left patients in relatively poor states of health. The level of respondent engagement in the survey exercise was not sensitive to the provision of supporting clinical information. [ABSTRACT FROM AUTHOR]