In recent decades, the 'tenacious assumptions' of biomedicine regarding the neutrality and universality of its knowledge claims have been significantly challenged by the growth of new collaborative and patient-focused models of Healthcare delivery. In this article, we discuss and critically reflect upon one such alternative Healthcare model developed at the University of Gothenburg Centre for Person-Centred Care in Sweden. This centre uses three clinical routines of narrative, partnership and documentation to provide Healthcare to people recognized as unique individuals rather than patients. Person-centred care in Gothenburg and more broadly is based on the assumption that a person is independently capable of reasoning and verbal expression and willing to provide clear and genuine narratives and cooperate with Healthcare professionals. However, we argue that by emphasizing individual capabilities of reasoning and verbal expression, an unnecessarily limited conception of personhood risks being imposed on these routines. Drawing upon semi-structured interviews with researchers in three very different Gothenburg Centre for Person-Centred Care research projects - about healthy ageing in migrant communities, neurogenic communication disorders, and psychosis - we highlight that how persons are recognized as unique and capable varies significantly in practice across different Healthcare settings. Thus, we assert that person-centred care's own potentially tenacious assumptions about the attributes of personhood risk distracting attention away from the variety of creative ways that professionals and persons promisingly find for translating the ideal of person-centred care into practice.

BACKGROUND: in 2008, the National Institute for Health Research (NIHR) began funding a major 5-year pilot research programme of translational research in England, establishing nine 'Collaborations for Leadership in Applied Health Research and Care' (CLAHRCs). A number of evaluations were carried out to examine whether or not the various collaborations worked as intended and why. In this paper, we examine what the theory of co-production adds to understanding of processes of knowledge creation and translation we observed in one of the CLAHRCs. METHODS: a case study of a successful knowledge translation project was identified from our wider realist evaluation of the mechanisms of closer collaboration at play in the CLAHRC. In the project, a computer simulation model of an emergency pathway for acute ischaemic stroke was built to explore if and how the time between the onset and treatment of the condition could be minimised by redesigning the pathway. The aim of the case study was to improve our understanding of the nature and workings of the mechanisms of closer collaboration that were associated with the more successful projects by examining the relevance of the theory of co-production. Qualitative methods of analysis were used to explore the fit between the mechanisms of closer collaboration we observed in the realist evaluation and the principles of co-production we identified from the literature. RESULTS: We found a close fit between the nine mechanisms of closer collaboration at work in the project and the principles of co-production (active agents; equality of partners; reciprocity and mutuality; transformative; and facilitated). The successful style of collaborative working exemplified by the project was consistent with a strong form of co-production. CONCLUSIONS: in our view, the theory of co-production provides useful insights into what it is about the qualities of collaborative working that inspire the requisite mechanisms for generating knowledge that is translated into practice. The theory provides a potentially useful basis for future knowledge translation programmes and projects in applied health research in a range of contexts.

Having previously conducted qualitative syntheses of the diabetes literature, we wanted to explore the changes in theoretical approaches, methodological practices, and the construction of substantive knowledge which have recently been presented in the qualitative diabetes literature. The aim of this research was to explore the feasibility of synthesizing existing qualitative syntheses of patient perspectives of diabetes using meta-study methodology. A systematic review of qualitative literature, published between 2000 and 2013, was conducted. Six articles were identified as qualitative syntheses. The meta-study methodology was used to compare the theoretical, methodological, analytic, and synthetic processes across the six studies, exploring the potential for an overarching synthesis. We identified that while research questions have increasingly concentrated on specific aspects of diabetes, the focus on systematic review processes has led to the neglect of qualitative theory and methods. This can inhibit the production of compelling results with meaningful clinical applications. Although unable to produce a synthesis of syntheses, we recommend that researchers who conduct qualitative syntheses pay equal attention to qualitative traditions and systematic review processes, to produce research products that are both credible and applicable.

Self-management policies have presented opportunities for patients with long-term conditions to take control and actively improve their health. However, the work of self-management appears to be packaged in the form of essential and desirable skills and attributes required for success. This article presents the findings of a qualitative study, employing longitudinal diary interviews with 21 patients aged between 60 and 85 years diagnosed with coronary heart disease from three contrasting general practice areas. Drawing on concepts of the care of the self and the reflexive self, this article presents the diversity of self-management practices by older patients in the context of their lifeworld. Illustrated through individual case studies, it clearly identifies where patients are engaged self-managers with the agency, knowledge and self-discipline to modify their behaviour for an improved health outcome. This study highlights their life and illness perspectives as well as those of patients who are burdened with emotional insecurity, comorbidities and caring responsibilities. It shows the spectrum of relationships with health professionals that influence engaged self-management. We suggest that policy initiatives that favour behavioural change neglect social context and the individualised practices that are a necessary response to structural and psychosocial constraints.

Patient and public involvement (PPI) is now firmly embedded in the policies of the Department of Health in England. This article commences with a review of the changing structures of PPI in English health and social care, largely in terms of their own explicit rationales, using that as a spring board for the development of a general theoretical framework. Arguing that all democratic states face major dilemmas in seeking to meet conflicting demands and expectations for involvement, we identify the diverse and sometimes conflicting cultural and political features embedded in current models of involvement in England, in a context of rapid delegitimation of the wider political system. We identify some of the major inherent weaknesses of a monolithic, single-track model of patient and public involvement in the management and running of health and social care systems. Although the mechanisms and methods for delivering this may vary we suggest the model remains fundamentally the same. We also suggest why the current structures are unlikely to provide an effective response either to the pluralism of values, ideologies and social groups engaged in the sector or to the valuing of lay knowledge which could potentially sustain the social networks essential for effective participation and service improvement. The article proposes a four dimensional framework for analysing the nature of PPI. These dimensions, it is argued, provide the co-ordinates along which new 'knowledge spaces' for PPI could be constructed. These knowledge spaces could facilitate and support the emergence of social networks of knowledgeable actors capable of engaging with professionals on equal terms and influencing service provision.

Background: Methods for reviewing and synthesising findings from quantitative research studies in health care are well established. Although there is recognition of the need for qualitative research to be brought into the evidence base, there is no consensus about how this should be done and the methods for synthesising qualitative research are at a relatively early stage of development. Objective: to evaluate meta-ethnography as a method for synthesising qualitative research studies in health and health care. Methods: Two full syntheses of qualitative research studies were conducted between April 2002 and September 2004 using meta-ethnography: (1) studies of medicine-taking and (2) studies exploring patients' experiences of living with rheumatoid arthritis. Potentially relevant studies identified in multiple literature searches conducted in July and August 2002 (electronically and by hand) were appraised using a modified version of the Critical Appraisal Skills Programme questions for understanding qualitative research. Candidate papers were excluded on grounds of lack of relevance to the aims of the synthesis or because the work failed to employ qualitative methods of data collection and analysis. Results: Thirty-eight studies were entered into the medicine-taking synthesis, one of which did not contribute to the final synthesis. The synthesis revealed a general caution about taking medicine, and that the practice of lay testing of medicines was widespread. People were found to take their medicine passively or actively or to reject it outright. Some, in particular clinical areas, were coerced into taking it. Those who actively accepted their medicine often modified the regimen prescribed by a doctor, without the doctor's knowledge. The synthesis concluded that people often do not take their medicines as prescribed because of concern about the medicines themselves. 'Resistance' emerged from the synthesis as a concept that best encapsulated the lay response to prescribed medicines. It was suggested that a policy focus should be on the problems associated with the medicines themselves and on evaluating the effectiveness of alternative treatments that some people use in preference to prescribed medicines. The synthesis of studies of lay experiences of living with rheumatoid arthritis began with 29 papers. Four could not be synthesised, leaving 25 papers (describing 22 studies) contributing to the final synthesis. Most of the papers were concerned with the everyday experience of living with rheumatoid arthritis. This synthesis did not produce significant new insights, probably because the early papers in the area were substantial and theoretically rich, and later papers were mostly confirmatory. In both topic areas, only a minority of the studies included in the syntheses were found to have referenced each other, suggesting that unnecessary replication had occurred. Limitations: We only evaluated meta-ethnography as a method for synthesising qualitative research, but there are other methods being employed. Further research is required to investigate how different methods of qualitative synthesis influence the outcome of the synthesis. Conclusions: Meta-ethnography is an effective method for synthesising qualitative research. The process of reciprocally translating the findings from each individual study into those from all the other studies in the synthesis, if applied rigorously, ensures that qualitative data can be combined. Following this essential process, the synthesis can then be expressed as a 'line of argument' that can be presented as text and in summary tables and diagrams or models. Meta-ethnography can produce significant new insights, but not all meta-ethnographic syntheses do so. Instead, some will identify fields in which saturation has been reached and in which no theoretical development has taken place for some time. Both outcomes are helpful in either moving research forward or avoiding wasted resources. Meta-ethnography is a highly interpretative method requiring considerable immersion in the individual studies to achieve a synthesis. It places substantial demands upon the synthesiser and requires a high degree of qualitative research skill. Meta-ethnography has great potential as a method of synthesis in qualitative health technology assessment but it is still evolving and cannot, at present, be regarded as a standardised approach capable of application in a routinised way. Funding: Funding for this study was provided by the Health Technology Assessment programme of the National Institute for Health Research. © Queen's Printer and Controller of HMSO 2011.

This study aimed to address the question: what does "effectiveness" mean to researchers in the context of literature searching for systematic reviews? We conducted a thematic analysis of responses to an e-mail survey. Eighty-nine study authors, whose studies met inclusion in a recent review (2018), were contacted via e-mail and asked three questions; one directly asking the question: in literature searching, what does effective (or effectiveness in) literature searching mean to you? Thirty-eight (46%) responses were received from diverse professional groups, including: literature searchers, systematic reviewers, clinicians and researchers. A shared understanding of what effectiveness means was not identified. Instead, five themes were developed from data: (a) effectiveness is described as a metric; (b) effectiveness is a balance between metrics; (c) effectiveness can be categorized by search purpose; (d) effectiveness is an outcome; and, (e) effectiveness is an experimental concept. We propose that these themes constitute a preliminary typology of understandings. No single definition of effectiveness was identified. The proposed typology suggests that different researchers have differing understandings of effectiveness. This could lead to uncertainty as to the aim and the purpose of literature searches and confusion about the outcomes. The typology offers a potential route for further exploration.

(1) Background: Applied health services research (AHSR) relies upon coordination across multiple organizational boundaries. Our aim was to understand how competing organizational and professional goals enhance or impede the conduct of high quality AHSR. (2) Methods: a qualitative study was conducted in two local health care systems in the UK, linked to a feasibility trial of a clinic-based intervention in secondary care. Data collection involved 24 semi-structured interviews with research managers, clinical research staff, health professionals, and patients. (3) Results: This study required a dynamic network of interactions between heterogeneous health and social care stakeholders, each characterized by differing ways of organizing activities which constitute their core functions; cultures of collaboration and interaction and understanding of what research involves and how it contributes to patient care. These interrelated factors compounded the occupational and organizational boundaries that hindered communication and coordination. (4) Conclusions: Despite the strategic development of multiple organizations to foster inter-professional collaboration, the competing goals of research and clinical practice can impede the conduct of high quality AHSR. To remedy this requires the alignment and streamlining of organizational goals, so that all agencies involved in AHSR develop a shared understanding and mutual respect for the progress of evidence-based medicine and the complex and often nuanced environments in which it is created and practiced.

The COST CARES project aims to support healthcare cost containment and improve healthcare quality across Europe by developing the research and development necessary for person-centred care (PCC) and health promotion. This paper presents an overview evaluation strategy for testing ‘Exploratory Health Laboratories’ to deliver these aims. Our strategy is theory driven and evidence based, and developed through a multi-disciplinary and European-wide team. Specifically, we define the key approach and essential criteria necessary to evaluate initial testing, and on-going large-scale implementation with a core set of accompanying methods (metrics, models, and measurements). This paper also outlines the enabling mechanisms that support the development of the “Health Labs” towards innovative models of ethically grounded and evidenced-based PCC.

In this paper we present an exemplar of the initial theory-building phase of Theory-driven Evaluation (TDE) for the PARTNERS2 project, a collaborative care intervention for people with experience of psychosis in England. Initial theory-building involved analysis of literature, interviews with key leaders, and focus groups with service users. The initial programme theory (IPT) was developed from these sources in an iterative process between researchers and stakeholders (service users, practitioners, commissioners) involving four activities: articulation of 442 explanatory statements systematically developed using realist methods; debate and consensus; communication; interrogation.
We refute two criticisms of TDE of complex interventions. We demonstrate how the process of initial theory-building made a meaningful contribution to our complex intervention in five ways. Although time consuming, it allowed us to develop an internally coherent and well documented intervention.
This study and the lessons learnt provide a detailed resource for other researchers wishing to build theory for TDE.

Background
Literature searching is acknowledged as a crucial step in a systematic review. Information professionals, in response to the needs of intervention effectiveness systematic reviews, have developed a systematic process of literature searching which aims to be comprehensive, transparent and reproducible, and to minimise the introduction of bias in systematic reviews. The process which has evolved has not been examined in detail before but it has been adopted as the principal approach to literature searching in other types of systematic review. It is not clear if this is appropriate and if an alternative approach might be more effective.
Thesis aims
The aims of this thesis are to:
1) examine approaches to systematic literature searching for systematic reviews; and
2) propose and test a method of systematic literature searching for reviews which do not focus on the effectiveness of clinical interventions.
Methods
Two literature reviews, one systematic review and two comparative case studies were undertaken to meet the aims of the thesis.
Results
A critical literature review identified and described a conventional approach to literature searching common to nine leading handbooks of systematic review. An alternative, tailored approach to literature searching was developed. Two case studies illustrated that the tailored approach was more effective, and potentially offered better value, than the conventional approach.
Conclusions
Information professionals can develop tailored literature search approaches for use in systematic reviews and as a useful alternative to the conventional approach, particularly for reviews including study designs beyond controlled trials. The role of the information professional as decision maker, the involvement of the research team and experts, preparing for literature searching and the use of supplementary search methods, are important to the success of tailored literature search approaches.

© 2019 the Author(s). Aims: the aim of this study was to provide guidance to improve the completeness and clarity of meta-ethnography reporting. Background: Evidence-based policy and practice require robust evidence syntheses which can further understanding of people's experiences and associated social processes. Meta-ethnography is a rigorous seven-phase qualitative evidence synthesis methodology, developed by Noblit and Hare. Meta-ethnography is used widely in health research, but reporting is often poor quality and this discourages trust in and use of its findings. Meta-ethnography reporting guidance is needed to improve reporting quality. Design: the eMERGe study used a rigorous mixed-methods design and evidence-based methods to develop the novel reporting guidance and explanatory notes. Methods: the study, conducted from 2015 to 2017, comprised of: (1) a methodological systematic review of guidance for meta-ethnography conduct and reporting; (2) a review and audit of published meta-ethnographies to identify good practice principles; (3) international, multidisciplinary consensus-building processes to agree guidance content; (4) innovative development of the guidance and explanatory notes. Findings: Recommendations and good practice for all seven phases of meta-ethnography conduct and reporting were newly identified leading to 19 reporting criteria and accompanying detailed guidance. Conclusion: the bespoke eMERGe Reporting Guidance, which incorporates new methodological developments and advances the methodology, can help researchers to report the important aspects of meta-ethnography. Use of the guidance should raise reporting quality. Better reporting could make assessments of confidence in the findings more robust and increase use of meta-ethnography outputs to improve practice, policy, and service user outcomes in health and other fields. This is the first tailored reporting guideline for meta-ethnography. This article is being simultaneously published in the following journals: Journal of Advanced Nursing, Psycho-oncology, Review of Education, and BMC Medical Research Methodology.

© 2019 the Authors. Psycho-Oncology published by John Wiley. &. Sons Ltd. Aims: the aim of this study was to provide guidance to improve the completeness and clarity of meta-ethnography reporting. Background: Evidence-based policy and practice require robust evidence syntheses which can further understanding of people's experiences and associated social processes. Meta-ethnography is a rigorous seven-phase qualitative evidence synthesis methodology, developed by Noblit and Hare. Meta-ethnography is used widely in health research, but reporting is often poor quality and this discourages trust in and use of its findings. Meta-ethnography reporting guidance is needed to improve reporting quality. Design: the eMERGe study used a rigorous mixed-methods design and evidence-based methods to develop the novel reporting guidance and explanatory notes. Methods: the study, conducted from 2015 to 2017, comprised of: (1) a methodological systematic review of guidance for meta-ethnography conduct and reporting; (2) a review and audit of published meta-ethnographies to identify good practice principles; (3) international, multidisciplinary consensus-building processes to agree guidance content; (4) innovative development of the guidance and explanatory notes. Findings: Recommendations and good practice for all seven phases of meta-ethnography conduct and reporting were newly identified leading to 19 reporting criteria and accompanying detailed guidance. Conclusion: the bespoke eMERGe Reporting Guidance, which incorporates new methodological developments and advances the methodology, can help researchers to report the important aspects of meta-ethnography. Use of the guidance should raise reporting quality. Better reporting could make assessments of confidence in the findings more robust and increase use of meta-ethnography outputs to improve practice, policy, and service user outcomes in health and other fields. This is the first tailored reporting guideline for meta-ethnography. This article is being simultaneously published in the following journals: Journal of Advanced Nursing, Psycho-oncology, Review of Education, and BMC Medical Research Methodology.

Patient and public involvement in health research and care has been repeatedly theorised using the metaphor of spaces, knowledge spaces and participatory citizenship spaces. Drawing on data from a three year qualitative study of people involved in health research with organisations across England, this article explores where these spaces fit in a wider social, political and historical landscape. It outlines a theme recurring frequently in the study data: a unified public/patient/service-user perspective in opposition to a professional/clinical/academic view. This is discussed in relation to Habermas's division between the lifeworld and system. Patient and public involvement is mapped as spaces between these spheres, therefore between the social norms pertaining to them. In this way, involvement spaces are seen as liminal, in-between or threshold spaces; this concept provides us with new insights on both the opportunities and the conflicts that are integral in the ambiguous, complex interactions which take place in these spaces.

BackgroundReducing unnecessary prescribing remains a key priority for tackling the global rise of antibiotic-resistant infections.AimThe authors sought to update a 2011 qualitative synthesis of GPs’ experiences of antibiotic prescribing for acute respiratory tract infections (ARTIs), including their views of interventions aimed at more prudent prescribing. They expanded the original scope to encompass all primary care professionals (PCPs) who can prescribe or dispense antibiotics for ARTIs (for example, nurses and pharmacists).Design and settingSystematic review and meta-ethnography of qualitative studies.MethodA systematic search was conducted on MEDLINE, EMBASE, PsycINFO, CINAHL, ASSIA, and Web of Science. No date or language restrictions were used. Identified studies were grouped according to their thematic focus (usual care versus intervention), and two separate syntheses were performed.ResultsIn all, 53 articles reporting the experiences of >1200 PCPs were included. Analysis of usual-care studies showed that PCPs tend to assume multiple roles in the context of ARTI consultations (the expert self, the benevolent self, the practical self), depending on the range of intrapersonal, interpersonal, and contextual situations in which they find themselves. Analysis of intervention studies identified four possible ways in which PCPs may experience quality improvement interventions (compromise, ‘supportive aids’, source of distress, and unnecessary).ConclusionContrary to the original review, these results suggest that the use of the same intervention is experienced in a totally different way by different PCPs, and that the same elements that are perceived as benefits by some could be viewed as drawbacks by others. Acceptability of interventions is likely to increase if these are context sensitive and take into account PCPs’ varying roles and changing priorities.

© 2018 the Author(s). Background: Systematic literature searching is recognised as a critical component of the systematic review process. It involves a systematic search for studies and aims for a transparent report of study identification, leaving readers clear about what was done to identify studies, and how the findings of the review are situated in the relevant evidence. Information specialists and review teams appear to work from a shared and tacit model of the literature search process. How this tacit model has developed and evolved is unclear, and it has not been explicitly examined before. The purpose of this review is to determine if a shared model of the literature searching process can be detected across systematic review guidance documents and, if so, how this process is reported in the guidance and supported by published studies. Method: a literature review. Two types of literature were reviewed: guidance and published studies. Nine guidance documents were identified, including: the Cochrane and Campbell Handbooks. Published studies were identified through 'pearl growing', citation chasing, a search of PubMed using the systematic review methods filter, and the authors' topic knowledge. The relevant sections within each guidance document were then read and re-read, with the aim of determining key methodological stages. Methodological stages were identified and defined. This data was reviewed to identify agreements and areas of unique guidance between guidance documents. Consensus across multiple guidance documents was used to inform selection of 'key stages' in the process of literature searching. Results: Eight key stages were determined relating specifically to literature searching in systematic reviews. They were: who should literature search, aims and purpose of literature searching, preparation, the search strategy, searching databases, supplementary searching, managing references and reporting the search process. Conclusions: Eight key stages to the process of literature searching in systematic reviews were identified. These key stages are consistently reported in the nine guidance documents, suggesting consensus on the key stages of literature searching, and therefore the process of literature searching as a whole, in systematic reviews. Further research to determine the suitability of using the same process of literature searching for all types of systematic review is indicated.

BACKGROUND: We conducted a pilot study of an intervention to facilitate patients' agenda setting in clinical consultations. The primary aim of the study was to test the feasibility of running the randomized controlled trial. A secondary objective was to assess the extent to which patient and public involvement (PPI) could contribute to the process of qualitative data analysis (QDA). AIMS: to describe a novel approach to including patient partners in QDA; to illustrate the kinds of contribution that patient partners made to QDA in this context; and to propose a characterization of a process by which patient involvement can contribute to knowledge production. METHODS: Six patient and public representatives were supported to contribute to data analysis via a range of modalities. During a series of QDA workshops, experienced research staff role-played consultations and interviews, and provided vignettes. Workshop data and PPI diaries were analysed using thematic discourse analysis. RESULTS: We characterized a process of thesis, antithesis and synthesis. This PPI group contributed to the rigour and validity of the study findings by challenging their own and the researchers' assumptions, and by testing the emerging hypotheses. By training PPI representatives to undertake qualitative data analysis, we transformed our understanding of doctor-patient consultations. CONCLUSIONS: This research required changes to our usual research practices but was in keeping with the objective of establishing meaningful patient involvement for a future definitive trial. This work was informed by concepts of critical humility, and a process of knowledge production enabled via the construction of a knowledge space.

OBJECTIVES: to identify the metrics or methods used by researchers to determine the effectiveness of literature searching where supplementary search methods are compared to bibliographic database searching. We also aimed to determine which metrics or methods are summative or formative and how researchers defined effectiveness in their studies. STUDY DESIGN AND SETTING: Systematic review. We searched MEDLINE and Embase to identify published studies evaluating literature search effectiveness in health or allied topics. RESULTS: Fifty studies met full-text inclusion criteria. Six metrics (sensitivity, specificity, precision, accuracy, number needed to read, and yield) and one method (capture recapture) were identified. CONCLUSION: Studies evaluating effectiveness need to identify clearly the threshold at which they will define effectiveness and how the evaluation they report relates to this threshold. Studies that attempt to investigate literature search effectiveness should be informed by the reporting of confidence intervals, which aids interpretation of uncertainty around the result, and the search methods used to derive effectiveness estimates should be clearly reported and validated in studies.

In recent decades, the 'tenacious assumptions' of biomedicine regarding the neutrality and universality of its knowledge claims have been significantly challenged by the growth of new collaborative and patient-focused models of Healthcare delivery. In this article, we discuss and critically reflect upon one such alternative Healthcare model developed at the University of Gothenburg Centre for Person-Centred Care in Sweden. This centre uses three clinical routines of narrative, partnership and documentation to provide Healthcare to people recognized as unique individuals rather than patients. Person-centred care in Gothenburg and more broadly is based on the assumption that a person is independently capable of reasoning and verbal expression and willing to provide clear and genuine narratives and cooperate with Healthcare professionals. However, we argue that by emphasizing individual capabilities of reasoning and verbal expression, an unnecessarily limited conception of personhood risks being imposed on these routines. Drawing upon semi-structured interviews with researchers in three very different Gothenburg Centre for Person-Centred Care research projects - about healthy ageing in migrant communities, neurogenic communication disorders, and psychosis - we highlight that how persons are recognized as unique and capable varies significantly in practice across different Healthcare settings. Thus, we assert that person-centred care's own potentially tenacious assumptions about the attributes of personhood risk distracting attention away from the variety of creative ways that professionals and persons promisingly find for translating the ideal of person-centred care into practice.

BACKGROUND: the purpose and contribution of supplementary search methods in systematic reviews is increasingly acknowledged. Numerous studies have demonstrated their potential in identifying studies or study data that would have been missed by bibliographic database searching alone. What is less certain is how supplementary search methods actually work, how they are applied, and the consequent advantages, disadvantages and resource implications of each search method. The aim of this study is to compare current practice in using supplementary search methods with methodological guidance. METHODS: Four methodological handbooks in informing systematic review practice in the UK were read and audited to establish current methodological guidance. Studies evaluating the use of supplementary search methods were identified by searching five bibliographic databases. Studies were included if they (1) reported practical application of a supplementary search method (descriptive) or (2) examined the utility of a supplementary search method (analytical) or (3) identified/explored factors that impact on the utility of a supplementary method, when applied in practice. RESULTS: Thirty-five studies were included in this review in addition to the four methodological handbooks. Studies were published between 1989 and 2016, and dates of publication of the handbooks ranged from 1994 to 2014. Five supplementary search methods were reviewed: contacting study authors, citation chasing, handsearching, searching trial registers and web searching. CONCLUSIONS: There is reasonable consistency between recommended best practice (handbooks) and current practice (methodological studies) as it relates to the application of supplementary search methods. The methodological studies provide useful information on the effectiveness of the supplementary search methods, often seeking to evaluate aspects of the method to improve effectiveness or efficiency. In this way, the studies advance the understanding of the supplementary search methods. Further research is required, however, so that a rational choice can be made about which supplementary search strategies should be used, and when.

BACKGROUND: to empower patients and improve the quality of care, policy-makers increasingly adopt systems to enhance person-centred care. Although models of person-centredness and patient-centredness vary, respecting the needs and preferences of individuals receiving care is paramount. In Sweden, as in other countries, healthcare providers seek to improve person-centred principles and address gaps in practice. Consequently, researchers at the University of Gothenburg Centre for Person-Centred Care are currently delivering person-centred interventions employing a framework that incorporates three routines. These include eliciting the patient's narrative, agreeing a partnership with shared goals between patient and professional, and safeguarding this through documentation. AIM: to explore the barriers and facilitators to the delivery of person-centred care interventions, in different contexts. METHOD: Qualitative interviews were conducted with a purposeful sample of 18 researchers from seven research studies across contrasting healthcare settings. Interviews were transcribed, translated and thematically analysed, adopting some basic features of grounded theory. ETHICAL ISSUES: the ethical code of conduct was followed and conformed to the ethical guidelines adopted by the Swedish Research Council. RESULTS: Barriers to the implementation of person-centred care covered three themes: traditional practices and structures; sceptical, stereotypical attitudes from professionals; and factors related to the development of person-centred interventions. Facilitators included organisational factors, leadership and training and an enabling attitude and approach by professionals. Trained project managers, patients taking an active role in research and adaptive strategies by researchers all helped person-centred care delivery. CONCLUSION: at the University of Gothenburg, a model of person-centred care is being initiated and integrated into practice through research. Knowledgeable, well-trained professionals facilitate the routines of narrative elicitation and partnership. Strong leadership and adaptive strategies are important for overcoming existing practices, routines and methods of documentation. This study provides guidance for practitioners when delivering and adapting person-centred care in different contexts.

© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted. Background Caregivers support self-management in heart failure but often experience stress, anxiety and ill health as a result of providing care. Aims 1. To identify the factors that contribute to the experience of anguish. 2. To understand how caregivers learn to live with what is frequently a challenging and demanding role. Methods Individual interviews with caregivers who had been caring for someone with heart failure for a minimum of 6 months. We used thematic analysis to inductively analyse transcripts. Results Twenty-two caregivers, from three centres in the United Kingdom, took part in individual interviews. The caregivers were aged between 39 and 84 years, and six were men. Twenty were in spousal or partner relationships. We found that caregivers often hide the extent of their emotional stress or anguish. We identified four main themes with explanatory subthemes - emotional impact (fear for the future and sense of hopelessness), role definition (changing sense of who I am, reduced resilience, learning care skills, role conflict and changing role), exclusion (exclusion by the cared-for person and by health professionals and feeling alone) and ignoring one's own health - that were associated with anguish. From these findings, we produced a caregiver needs assessment model in the context of caring for a person with heart failure. Conclusions and implications for practice Caregivers have many unmet and hidden needs. Primary care health professionals are well placed to meet the needs of caregivers. The model may be used by health and social care professionals to identify needs and to provide caregivers with targeted practical and emotional support; and for researchers developing interventions to enhance self-management in heart failure.

ObjectiveWe sought to develop a simulation modelling method to help better understand the complex interplay of factors that lead to people with type 2 diabetes and asthma not taking all of their medication as prescribed when faced with multiple medications (polypharmacy).Research design and methodsIn collaboration with polypharmacy patients, general practitioners, pharmacists and polypharmacy researchers, we developed a map of factors that directly and indirectly affect somebody’s decision to take their medication as prescribed when faced with multiple type 2 diabetes and asthma medications. We then translated these behavioural influences into logical rules using data from the literature and developed a proof-of-concept agent-based simulation model that captures the medicine-taking behaviours of those with type 2 diabetes and asthma taking multiple medications and which predicts both the clinical effectiveness and rates of adherence for different combinations of medications.ConclusionsThe model we have developed could be used as a prescription support tool or a way of estimating medicine-taking behaviour in cost-effectiveness analyses.

BACKGROUND: Fragmented care results in poor outcomes for individuals with complexity of need. Person-centred coordinated care (P3C) is perceived to be a potential solution, but an absence of accessible evidence and the lack of a scalable 'blue print' mean that services are 'experimenting' with new models of care with little guidance and support. This paper presents an approach to the implementation of P3C using collaborative action, providing examples of early developments across this programme of work, the core aim of which is to accelerate the spread and adoption of P3C in United Kingdom primary care settings. METHODS: Two centrally funded United Kingdom organisations (South West Collaboration for Leadership in Applied Health Research and Care and South West Academic Health Science Network) are leading this initiative to narrow the gap between research and practice in this urgent area of improvement through a programme of service change, evaluation and research. Multi-stakeholder engagement and co-design are core to the approach. A whole system measurement framework combines outcomes of importance to patients, practitioners and health organisations. Iterative and multi-level feedback helps to shape service change while collecting practice-based data to generate implementation knowledge for the delivery of P3C. The role of the research team is proving vital to support informed change and challenge organisational practice. The bidirectional flow of knowledge and evidence relies on the transitional positioning of researchers and research organisations. RESULTS: Extensive engagement and embedded researchers have led to strong collaborations across the region. Practice is beginning to show signs of change and data flow and exchange is taking place. However, working in this way is not without its challenges; progress has been slow in the development of a linked data set to allow us to assess impact innovations from a cost perspective. Trust is vital, takes time to establish and is dependent on the exchange of services and interactions. If collaborative action can foster P3C it will require sustained commitment from both research and practice. This approach is a radical departure from how policy, research and practice traditionally work, but one that we argue is now necessary to deal with the most complex health and social problems.

© 2017 the Author(s). Background: the introduction of innovative models of healthcare does not necessarily mean that they become embedded in everyday clinical practice. This study has two aims: first, to analyse deliberate and emergent strategies adopted by healthcare professionals to overcome barriers to normalization of a specific framework of person-centred care (PCC); and secondly, to explore how the recipients of PCC understand these strategies. Methods: This paper is based on a qualitative study of the implementation of PCC in a Swedish context. It draws on semi-structured interviews with 18 researchers and 17 practitioners who adopted a model of PCC on four different wards and 20 patients who were cared for in one of these wards. Data from these interviews were first coded inductively and emerging themes are analysed in relation to normalization process theory (NPT). Results: in addition to deliberate strategies, we identify emergent strategies to normalize PCC by (i) creating and sustaining coherence in small but continuously communicating groups (ii) interpreting PCC flexibly when it meets specific local situations and (iii) enforcing teamwork between professional groups. These strategies resulted in patients perceiving PCC as bringing about (i) a sense of ease (ii) appreciation of inter-professional congruity (ii) non-hierarchical communication. Conclusion: NPT is useful to identify and analyse deliberate and emergent strategies relating to mechanisms of normalization. Emergent strategies should be interpreted not as trivial solutions to problems in implementation, but as a possible repertoire of tools, practices and skills developed in situ. As professionals and patients may have different understandings of implementation, it is also crucial to include patients' perceptions to evaluate outcomes.

OBJECTIVES: This study explored the divergence and convergence between funded research about type 1 diabetes and the research agenda of people living with the condition and their carers. DESIGN, METHOD, SETTING: a secondary analysis was undertaken of existing data from two UK organisations who regularly work with patients and carers to identify research priorities. The research ideas of people with diabetes were identified in two ways: in 15 research question generation workshops involving approximately 100 patients and carers, and in a James Lind Alliance Type 1 Diabetes Priority Setting Partnership with approximately 580 patients, carers and clinicians (clinician question submissions were excluded from analysis). A total of 859 individual research questions were collected from patients and carers. Diabetes research funding activity was identified through extensive online searches which provided a total of 172 relevant research projects for analysis. RESULTS: the data were thematically analysed and areas of priority for research identified and compared between the patient and funded research agendas. The overall finding of this study is that there is substantial convergence between the two research agendas, alongside some important areas of divergence. The key areas of divergence were found in care delivery, injection issues, psychosocial impacts and women's health. We also demonstrate how an apparently convergent priority can host significant differences in emphasis between patient-generated and funded research agendas. CONCLUSIONS: We offer a comparison of a funded research agenda with one that has been derived directly from people with type 1 diabetes without initial framing by researchers. This provided a rare opportunity to explore the viewpoints of the end-users of research and compare them to realised research as determined by researchers and research organisations.

BACKGROUND: Person-centred care (PCC) is increasingly advocated as a new way of delivering health care, but there is little evidence that it is widely practised. The University of Gothenburg Centre for Person-Centred Care (GPCC) was set up in 2010 to develop and implement person-centred care in clinical practice on the basis of three routines. These routines are based on eliciting the patient's narrative to initiate a partnership; working the partnership to achieve commonly agreed goals; and using documentation to safeguard the partnership and record the person's narrative and shared goals. OBJECTIVE: in this paper, we aimed to explore professionals' understanding of PCC routines as they implement the GPCC model in a range of different settings. METHODS: We conducted a qualitative study and interviewed 18 clinician-researchers from five health-care professions who were working in seven diverse GPCC projects. RESULTS: Interviewees' accounts of PCC emphasized the ways in which persons are seen as different from patients; the variable emphasis placed on the person's goals; and the role of the person's own resources in building partnerships. CONCLUSION: This study illustrates what is needed for health-care professionals to implement PCC in everyday practice: the recognition of the person is as important as the specific practical routines. Interviewees described the need to change the clinical mindset and to develop the ways of integrating people's narratives with clinical practice.

BACKGROUND: There is a growing literature on evaluating aspects of patient and public involvement (PPI). We have suggested that at the core of successful PPI is the dynamic interaction of different forms of knowledge, notably lay and professional. We have developed a four-dimensional theoretical framework for understanding these interactions. AIM: We explore the practical utility of the theoretical framework as a tool for mapping and evaluating the experience of PPI in health services research. METHODS: We conducted three workshops with different PPI groups in which participants were invited to map their PPI experiences on wall charts representing the four dimensions of our framework. The language used to describe the four dimensions was modified to make it more accessible to lay audiences. Participants were given sticky notes to indicate their own positions on the different dimensions and to write explanatory comments if they wished. Participants' responses were then discussed and analysed as a group. RESULTS: the three groups were distinctive in their mapped responses suggesting different experiences in relation to having a strong or weak voice in their organization, having few or many ways of getting involved, addressing organizational or public concerns and believing that the organization was willing to change or not. DISCUSSION: the framework has practical utility for mapping and evaluating PPI interactions and is sensitive to differences in PPI experiences within and between different organizations. The workshops enabled participants to reflect collaboratively on their experiences with a view to improving PPI experiences and planning for the future.

BACKGROUND: Guidelines and evidence-based drug treatment recommendations are usually based on the results of clinical trials, which have limited generalisability in routine clinical settings due to their restrictive eligibility criteria. These trials are also conducted in ideal and rigorously controlled settings. N of 1 trials, which are single patient multiple crossover studies, offer a means of increasing the evidence base and individualising care for individuals in clinical practice. This systematic review of the N of 1 drug treatment trial aims to investigate its usefulness for achieving optimal individualised patient care. METHODS: the following databases will be searched for relevant articles: MEDLINE, EMBASE, PsycINFO (all via Ovid), AMED, CINAHAL (via EBSCO), the Cochrane Library (including CENTRAL, NHS EED, and DARE), and Web of Science (Thomson Reuters). Supplementary searches will include ongoing trial databases and organisational websites. All N of 1 trials in which patients have been treated with a drug will be considered. Outcomes will include information on the clinical usefulness of N of 1 trials-i.e. achievement of optimal individualised care, health-care utilisation of patients, frequently used practices, experiences of clinical care or participation in N of 1 trials, adherence to treatment plan, and unwanted effects of the treatment. Screening of included papers will be undertaken independently by two reviewers, while data extraction and the quality of reporting will be conducted by one reviewer and checked by another. Both quantitative and qualitative summaries will be reported using appropriate methods. DISCUSSION: This review will provide new insights into the clinical utility of N of 1 drug trials in helping participants find the most acceptable treatment as defined by patients and clinicians based on the selected outcome measures and the perspectives of participants involved in such trials. Findings from this review will inform the development of a stakeholder workshop and guidance to help physicians find the optimum therapy for their patients and will help guide future research on N of 1 trials. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42016032452.

OBJECTIVE: Although conceptual definitions of person-centred care (PCC) vary, most models value the involvement of patients through patient-professional partnerships. While this may increase patients' sense of responsibility and control, research is needed to further understand how this partnership is created and perceived. This study aims to explore the realities of partnership as perceived by patients and health professionals in everyday PCC practice. DESIGN: Qualitative study employing a thematic analysis of semistructured interviews with professionals and patients. SETTING: Four internal medicine wards and two primary care centres in western Sweden. PARTICIPANTS: 16 health professionals based at hospital wards or primary care centres delivering person-centred care, and 20 patients admitted to one of the hospital wards. RESULTS: Our findings identified both informal and formal aspects of partnership. Informal aspects, emerging during the interaction between healthcare professionals and patients, without any prior guidelines or regulations, incorporated proximity and receptiveness of professionals and building a close connection and confidence. This epitomised a caring, respectful relationship congruent across accounts. Formal aspects, including structured ways of sustaining partnership were experienced differently. Professionals described collaborating with patients to encourage participation, capture personal goals, plan and document care. However, although patients felt listened to and informed, they were content to ask questions and felt less involved in care planning, documentation or exploring lifeworld goals. They commonly perceived participation as informed discussion and agreement, deferring to professional knowledge and expertise in the presence of an empathetic and trusting relationship. CONCLUSIONS: in our study, patients appear to value a process of human connectedness above and beyond formalised aspects of documenting agreed goals and care planning. PCC increases patients' confidence in professionals who are competent and able to make them feel safe and secure. Informal elements of partnership provide the conditions for communication and cooperation on which formal relations of partnership can be constructed.

BACKGROUND: in 2008, the National Institute for Health Research (NIHR) began funding a major 5-year pilot research programme of translational research in England, establishing nine 'Collaborations for Leadership in Applied Health Research and Care' (CLAHRCs). A number of evaluations were carried out to examine whether or not the various collaborations worked as intended and why. In this paper, we examine what the theory of co-production adds to understanding of processes of knowledge creation and translation we observed in one of the CLAHRCs. METHODS: a case study of a successful knowledge translation project was identified from our wider realist evaluation of the mechanisms of closer collaboration at play in the CLAHRC. In the project, a computer simulation model of an emergency pathway for acute ischaemic stroke was built to explore if and how the time between the onset and treatment of the condition could be minimised by redesigning the pathway. The aim of the case study was to improve our understanding of the nature and workings of the mechanisms of closer collaboration that were associated with the more successful projects by examining the relevance of the theory of co-production. Qualitative methods of analysis were used to explore the fit between the mechanisms of closer collaboration we observed in the realist evaluation and the principles of co-production we identified from the literature. RESULTS: We found a close fit between the nine mechanisms of closer collaboration at work in the project and the principles of co-production (active agents; equality of partners; reciprocity and mutuality; transformative; and facilitated). The successful style of collaborative working exemplified by the project was consistent with a strong form of co-production. CONCLUSIONS: in our view, the theory of co-production provides useful insights into what it is about the qualities of collaborative working that inspire the requisite mechanisms for generating knowledge that is translated into practice. The theory provides a potentially useful basis for future knowledge translation programmes and projects in applied health research in a range of contexts.

This article consists of two personal reflections about the changing status of lay knowledge over the last 20 years. The first reflection is by Nicky Britten from the perspective of a sociologist working in medical schools whose interest in this topic was motivated by my own personal experience of health care and of teaching general practitioners. Starting with the problematic deficit model of 'ignorant patients', I trace the literature on patient-centredness, shared decision-making, lay knowledge, public involvement in research and social movements. Looking at medicines use in particular, I deplore the continued hegemony of the concept of compliance in the face of extensively documented problems with the licensing, regulation, prescribing and monitoring of medicines. I argue that lay knowledge is now taken more seriously, not so much because of advocacy by clinicians and academics, but because of social movements and social action. We may have moved from 'anecdotes' to 'lived experience' but there is still a way to go, particularly when it comes to medicines use. I end with a possible future scenario. The second reflection is by Kath Maguire and is a response from the perspective of someone who came to work in this field with the express purpose of improving engagement with lay knowledge. It questions my own 'layness' and explores the issues raised by Nicky Britten using the lens of lived experience. Finally, it questions the paradigm of social movements and highlights the importance of developing different ways of listening.

Having previously conducted qualitative syntheses of the diabetes literature, we wanted to explore the changes in theoretical approaches, methodological practices, and the construction of substantive knowledge which have recently been presented in the qualitative diabetes literature. The aim of this research was to explore the feasibility of synthesizing existing qualitative syntheses of patient perspectives of diabetes using meta-study methodology. A systematic review of qualitative literature, published between 2000 and 2013, was conducted. Six articles were identified as qualitative syntheses. The meta-study methodology was used to compare the theoretical, methodological, analytic, and synthetic processes across the six studies, exploring the potential for an overarching synthesis. We identified that while research questions have increasingly concentrated on specific aspects of diabetes, the focus on systematic review processes has led to the neglect of qualitative theory and methods. This can inhibit the production of compelling results with meaningful clinical applications. Although unable to produce a synthesis of syntheses, we recommend that researchers who conduct qualitative syntheses pay equal attention to qualitative traditions and systematic review processes, to produce research products that are both credible and applicable.

© 2016 Informa UK Limited, trading as Taylor. &. Francis Group. In this article we examine a risk management tool that was used in a pilot programme of applied health research in the south-west of England funded by the National Institute for Health Research (NIHR). During a wider internal evaluation of the NIHR Collaboration for Leadership in Applied Health Research and Care for the South West Peninsula, we became interested in how risk was being defined and managed in the programme. Our search of the empirical literature showed that little attention had been given to risk governance within large-scale organisational change programmes in the health field. Through analysis of official documents and interviews with senior managers, we examined the nature and the value of the risk tool that was used by the programme managers. This highlighted that the programme was believed to be a ‘relatively risky’ initiative that required active management. The senior managers developed a risk tool for this purpose, which was regularly used throughout the pilot. It was perceived to have value in three main ways – providing assurance to members of the collaboration, responsiveness to the wider context and acceptability as part of routine programme implementation. Our analysis also highlighted intentional risk-taking within a complex partnership programme that sought to facilitate the translation of evidence into everyday practice. We discuss the implications of our insights for the further development of risk tools and the potential value of ‘edgework’ as a theoretical framework to inform further research of risk management in complex programmes.

INTRODUCTION: the Rehabilitation EnAblement in CHronic Heart Failure (REACH-HF) trial is part of a research programme designed to develop and evaluate a health professional facilitated, home-based, self-help rehabilitation intervention to improve self-care and health-related quality of life in people with heart failure and their caregivers. The trial will assess the clinical effectiveness and cost-effectiveness of the REACH-HF intervention in patients with systolic heart failure and impact on the outcomes of their caregivers. METHODS AND ANALYSIS: a parallel two group randomised controlled trial with 1:1 individual allocation to the REACH-HF intervention plus usual care (intervention group) or usual care alone (control group) in 216 patients with systolic heart failure (ejection fraction

Self-management policies have presented opportunities for patients with long-term conditions to take control and actively improve their health. However, the work of self-management appears to be packaged in the form of essential and desirable skills and attributes required for success. This article presents the findings of a qualitative study, employing longitudinal diary interviews with 21 patients aged between 60 and 85 years diagnosed with coronary heart disease from three contrasting general practice areas. Drawing on concepts of the care of the self and the reflexive self, this article presents the diversity of self-management practices by older patients in the context of their lifeworld. Illustrated through individual case studies, it clearly identifies where patients are engaged self-managers with the agency, knowledge and self-discipline to modify their behaviour for an improved health outcome. This study highlights their life and illness perspectives as well as those of patients who are burdened with emotional insecurity, comorbidities and caring responsibilities. It shows the spectrum of relationships with health professionals that influence engaged self-management. We suggest that policy initiatives that favour behavioural change neglect social context and the individualised practices that are a necessary response to structural and psychosocial constraints.

BACKGROUND: Telephone triage represents one strategy to manage demand for face-to-face GP appointments in primary care. However, limited evidence exists of the challenges GP practices face in implementing telephone triage. We conducted a qualitative process evaluation alongside a UK-based cluster randomised trial (ESTEEM) which compared the impact of GP-led and nurse-led telephone triage with usual care on primary care workload, cost, patient experience, and safety for patients requesting a same-day GP consultation. The aim of the process study was to provide insights into the observed effects of the ESTEEM trial from the perspectives of staff and patients, and to specify the circumstances under which triage is likely to be successfully implemented. Here we report perspectives of staff. METHODS: the intervention comprised implementation of either GP-led or nurse-led telephone triage for a period of 2-3 months. A qualitative evaluation was conducted using staff interviews recruited from eight general practices (4 GP triage, 4 Nurse triage) in the UK, implementing triage as part of the ESTEEM trial. Qualitative interviews were undertaken with 44 staff members in GP triage and nurse triage practices (16 GPs, 8 nurses, 7 practice managers, 13 administrative staff). RESULTS: Staff reported diverse experiences and perceptions regarding the implementation of telephone triage, its effects on workload, and on the benefits of triage. Such diversity were explained by the different ways triage was organised, the staffing models used to support triage, how the introduction of triage was communicated across practice staff, and by how staff roles were reconfigured as a result of implementing triage. CONCLUSION: the findings from the process evaluation offer insight into the range of ways GP practices participating in ESTEEM implemented telephone triage, and the circumstances under which telephone triage can be successfully implemented beyond the context of a clinical trial. Staff experiences and perceptions of telephone triage are shaped by the way practices communicate with staff, prepare for and sustain the changes required to implement triage effectively, as well as by existing practice culture, and staff and patient behaviour arising in response to the changes made. TRIAL REGISTRATION: Current Controlled Trials ISRCTN20687662. Registered 28 May 2009.

© SAGE Publications. In this article, we present the findings of a participatory realistic evaluation of a 5-year program of health care research intended to promote the translation of knowledge into routine clinical practice. The program was one of the nine pilot Collaborations for Leadership in Applied Health Research and Care funded by the English National Institute for Health Research between 2008 and 2013. Our aim was to delineate the mechanisms by which, and circumstances in which, some projects carried out under the program achieved success in knowledge translation while others were frustrated. Using qualitative methods, we examined how closer collaboration between academics and clinicians worked in four purposefully chosen case studies. In a synthesis of the findings, we produced a "black box" model of how knowledge translation was enabled by the activation of nine mechanisms. These are summarized in the form of five simple rules for promoting knowledge translation through collaborations based on principles of coproduction.

© 2015 Royal College of Speech and Language Therapists. Features of dysarthria associated with Parkinson's disease (PD), such as low volume, variable rate of speech and increased pauses, impact speaker intelligibility. Those affected report restricted interactional participation, although this area is under explored. Aims to examine naturally occurring instances of problems with intelligibility that resulted in multiple attempts at repair in order to consider repair initiation strategies that might restrict or enhance participation. Methods and Procedures Thirteen people with PD (PwPD) video-recorded over 10 h of informal conversation data in their home setting involving familiar conversation partners (CPs). Using a conversation analytic (CA) approach, and drawing on an existing typology of repair initiators (RIs) for everyday talk-in-interaction and their relative power to locate a turn's repairable element, the design and ordering of RIs used by CPs was addressed, alongside their local consequences. Outcomes and Results CPs tended to increase the specificity of their RIs in line with the existing typology, progressing from open class forms (e.g. 'mm?') to more specific forms (e.g. questions/partial repeats). Repeated open class repair initiators (OCRIs) were used where PD speakers' self-repair attempts provided limited information. Sometimes, however, specificity was increased too soon, before enough syntactic knowledge was gleaned, which resulted in an extended repair sequence. Where one OCRI followed another, the second always took a different form: lexically or in terms of prosodic/non-verbal features. RI forms not described in the existing typology were also identified, such as 'prompts to modify speech' (e.g. 'Speak louder') and repeating/rephrasing the original first pair part (e.g. question), and their effectiveness examined. Conclusions and Implications First steps are presented towards the design of a communication intervention promoting the efficient resolution of repair to moderate social withdrawal and increase participation for this client group. Future research will need to explore the feasibility and acceptability of such a resource.

OBJECTIVES: to identify the needs of caregivers supporting a person with heart failure and to inform the development of a caregiver resource to be used as part of a home-based self-management programme. METHODS: a qualitative study informed by thematic analysis involving 26 caregivers in individual interviews or a focus group. RESULTS: Three distinct aspects of caregiver support in heart failure management were identified. Firstly, caregivers identified needs about supporting management of heart failure including: coping with the variability of heart failure symptoms, what to do in an emergency, understanding and managing medicines, providing emotional support, promoting exercise and physical activity, providing personal care, living with a cardiac device and supporting depression management. Secondly, as they make the transition to becoming a caregiver, they need to develop skills to undertake difficult discussions about the role; communicate with health professionals; manage their own mental health, well-being and sleep; and manage home and work. Thirdly, caregivers require skills to engage social support, and voluntary and formal services while recognising that the long-term future is uncertain. DISCUSSION: the identification of the needs of caregiver has been used to inform the development of a home-based heart failure intervention facilitated by a trained health care practitioner.

Embodied health movements work on the boundary between lay and expert knowledge. Consumer groups, depending on their goals, may increase or decrease pharmaceuticalization. This paper reports a small case study about the retrospective evaluation of a specific second line treatment for type 2 diabetes by an existing patient involvement group. The group is part of a research collaboration between academia and the health service in England, and shares some characteristics of embodied health movements. We used the case study to explore whether an institutionally funded non activist patient group can make a more balanced contribution to drug licensing decisions than that made by either access-oriented or injury-oriented consumer groups, without being co-opted by an institutional agenda. The questions we wished to address were how this group evaluated existing mechanisms for licensing drugs; how they balanced scientific and lay knowledge; how they made their decisions; and how they viewed their experiences as panel members. The five panel members were interviewed before and after the panel discussion in July 2013. They were critical of current licensing processes, and used their own embodied experiences of medicines to evaluate expert knowledge. Their decisions on the panel were informed either by a balancing of benefits and harms, or by trust in experts. The case study suggests that such a group may have the potential both to balance the pro-pharmaceuticalization impact of access-oriented groups and to influence forms of pharmaceutical governance.

BACKGROUND: Telephone triage is proposed as a method of managing increasing demand for primary care. Previous studies have involved small samples in limited settings, and focused on nurse roles. Evidence is limited regarding the impact on primary care workload, costs, and patient safety and experience when triage is used to manage patients requesting same-day consultations in general practice. OBJECTIVES: in comparison with usual care (UC), to assess the impact of GP-led telephone triage (GPT) and nurse-led computer-supported telephone triage (NT) on primary care workload and cost, patient experience of care, and patient safety and health status for patients requesting same-day consultations in general practice. DESIGN: Pragmatic cluster randomised controlled trial, incorporating economic evaluation and qualitative process evaluation. SETTING: General practices (n = 42) in four regions of England, UK (Devon, Bristol/Somerset, Warwickshire/Coventry, Norfolk/Suffolk). PARTICIPANTS: Patients requesting same-day consultations. INTERVENTIONS: Practices were randomised to GPT, NT or UC. Data collection was not blinded; however, analysis was conducted by a statistician blinded to practice allocation. MAIN OUTCOME MEASURES: Primary - primary care contacts [general practice, out-of-hours primary care, accident and emergency (A&E) and walk-in centre attendances] in the 28 days following the index consultation request. Secondary - resource use and costs, patient safety (deaths and emergency hospital admissions within 7 days of index request, and A&E attendance within 28 days), health status and experience of care. RESULTS: of 20,990 eligible randomised patients (UC n = 7283; GPT n = 6695; NT n = 7012), primary outcome data were analysed for 16,211 patients (UC n = 5572; GPT n = 5171; NT n = 5468). Compared with UC, GPT and NT increased primary outcome contacts (over 28-day follow-up) by 33% [rate ratio (RR) 1.33, 95% confidence interval (CI) 1.30 to 1.36] and 48% (RR 1.48, 95% CI 1.44 to 1.52), respectively. Compared with GPT, NT was associated with a marginal increase in primary outcome contacts by 4% (RR 1.04, 95% CI 1.01 to 1.08). Triage was associated with a redistribution of primary care contacts. Although GPT, compared with UC, increased the rate of overall GP contacts (face to face and telephone) over the 28 days by 38% (RR 1.38, 95% CI 1.28 to 1.50), GP face-to-face contacts were reduced by 39% (RR 0.61, 95% CI 0.54 to 0.69). NT reduced the rate of overall GP contacts by 16% (RR 0.84, 95% CI 0.78 to 0.91) and GP face-to-face contacts by 20% (RR 0.80, 95% CI 0.71 to 0.90), whereas nurse contacts increased. The increased rate of primary care contacts in triage arms is largely attributable to increased telephone contacts. Estimated overall patient-clinician contact time on the index day increased in triage (GPT = 10.3 minutes; NT = 14.8 minutes; UC = 9.6 minutes), although patterns of clinician use varied between arms. Taking account of both the pattern and duration of primary outcome contacts, overall costs over the 28-day follow-up were similar in all three arms (approximately £75 per patient). Triage appeared safe, and no differences in patient health status were observed. NT was somewhat less acceptable to patients than GPT or UC. The process evaluation identified the complexity associated with introducing triage but found no consistency across practices about what works and what does not work when implementing it. CONCLUSIONS: Introducing GPT or NT was associated with a redistribution of primary care workload for patients requesting same-day consultations, and at similar cost to UC. Although triage seemed to be safe, investigation of the circumstances of a larger number of deaths or admissions after triage might be warranted, and monitoring of these events is necessary as triage is implemented. TRIAL REGISTRATION: Current Controlled Trials ISRCTN20687662. FUNDING: This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 19, No. 13. See the NIHR Journals Library website for further project information.

BACKGROUND: Much has been written about public involvement (PI) in health and social care research, but underpinning values are rarely made explicit despite the potential for these to have significant influence on the practice and assessment of PI. OBJECTIVE: the narrative review reported here is part of a larger MRC-funded study which is producing a framework and related guidance on assessing the impact of PI in health and social care research. The review aimed to identify and characterize the range of values associated with PI that are central elements of the framework. METHODS: We undertook a review and narrative synthesis of diverse literatures of PI in health and social care research, including twenty existing reviews and twenty-four chapters in sixteen textbooks. RESULTS: Three overarching value systems were identified, each containing five value clusters. (i) a system concerned with ethical and/or political issues including value clusters associated with empowerment; change/action; accountability/transparency; rights; and ethics (normative values). (ii). A system concerned with the consequences of public involvement in research including value clusters associated with effectiveness; quality/relevance; validity/reliability; representativeness/objectivity/generalizability; and evidence (substantive values). (iii) a system concerned with the conduct of public involvement in including value clusters associated with Partnership/equality; respect/trust; openness and honesty; independence; and clarity (process values). CONCLUSION: Our review identified three systems associated with PI in health and social care research focused on normative, substantive and process values. The findings suggest that research teams should consider and make explicit the values they attach to PI in research and discuss ways in which potential tensions may be managed in order to maximize the benefits of PI for researchers, lay experts and the research.

Background

Qualitative research on self-management for people with Type 2 Diabetes Mellitus (T2DM) has typically reported one-off retrospective accounts of individuals’ strategies. The aim of this research was to identify the ways in which self-management strategies are perceived by people with T2DM as being either supportive or unsupportive over time, by using qualitative findings from both longitudinal intervention studies and usual care.
Methods

A systematic review of qualitative literature, published between 2000 and 2013, was conducted using a range of searching techniques. 1374 prospective qualitative papers describing patients’ experiences of self-management strategies for T2DM were identified and screened. of the 98 papers describing qualitative research conducted in the UK, we identified 4 longitudinal studies (3 intervention studies, 1 study of usual care). Key concepts and themes were extracted, reviewed and synthesised using meta-ethnography techniques.
Results

Aspects of self-management strategies in clinical trials (e.g. supported exercise regimens) can be perceived as enabling the control of biomarkers and facilitative of quality of life. In contrast, aspects of self-management strategies outwith trial conditions (e.g. self-monitoring) can be perceived of as negative influences on quality of life. For self-management strategies to be sustainable in the long term, patients require a sense of having a stake in their management that is appropriate for their beliefs and perceptions, timely information and support, and an overall sense of empowerment in managing their diabetes in relation to other aspects of their life. This enables participants to develop flexible diabetes management strategies that facilitate quality of life and long term medical outcomes.
Conclusions

This synthesis has explored how patients give meaning to the experiences of interventions for T2DM and subsequent attempts to balance biomarkers with quality of life in the long term. People with T2DM both construct and draw upon causal accounts as a resource, and a means to counter their inability to balance medical outcomes and quality of life. These accounts can be mediated by the provision of timely and tailored information and support over time, which can allow people to develop a flexible regimen that can facilitate both quality of life and medical outcomes.

Objective: to explore areas of consensus and conflict in relation to perceived public involvement (PI) barriers and drivers, perceived impacts of PI and ways of evaluating PI approaches in health and social care research. Background: Internationally and within the UK the recognition of potential benefits of PI in health and social care research is gathering momentum and PI is increasingly identified by organisations as a prerequisite for funding. However, there is relatively little examination of the impacts of PI and how those impacts might be measured. Design: Mixed method, three-phase, modified Delphi technique, conducted as part of a larger MRC multiphase project. Sample: Clinical and non-clinical academics, members of the public, research managers, commissioners and funders. Findings: This study found high levels of consensus about the most important barriers and drivers to PI. There was acknowledgement that tokenism was common in relation to PI; and strong support for the view that demonstrating the impacts and value of PI was made more difficult by tokenistic practice. PI was seen as having intrinsic value; nonetheless, there was clear support for the importance of evaluating its impact. Research team cohesion and appropriate resources were considered essential to effective PI implementation. Panellists agreed that PI can be challenging, but can be facilitated by clear guidance, together with models of good practice and measurable standards. Conclusions: This study is the first to present empirical evidence of the opinions voiced by key stakeholders on areas of consensus and conflict in relation to perceived PI barriers and drivers, perceived impacts of PI and the need to evaluate PI. As such it further contributes to debate around best practice in PI, the potential for tokenism and how best to evaluate the impacts of PI. These findings have been used in the development of the Public Involvement Impact Assessment Framework (PiiAF), an online resource which offers guidance to researchers and members of the public involved in the PI process.

OBJECTIVES: to develop a model of heart failure patients' attitudes, beliefs, expectations, and experiences based on published qualitative research that could influence the development of self-management strategies. METHODS: a synthesis of 19 qualitative research studies using the method of meta-ethnography. RESULTS: This synthesis offers a conceptual model of the attitudes, beliefs, and expectations of patients with heart failure. Patients experienced a sense of disruption before developing a mental model of heart failure. Patients' reactions included becoming a strategic avoider, a selective denier, a well-intentioned manager, or an advanced self-manager. Patients responded by forming self-management strategies and finally assimilated the strategies into everyday life seeking to feel safe. DISCUSSION: This conceptual model suggests that there are a range of interplaying factors that facilitate the process of developing self-management strategies. Interventions should take into account patients' concepts of heart failure and their subsequent reactions.

OBJECTIVES: Patients and policy makers advocate that drug treatments should be individualised. However, the term is used in a variety of ways. We set out to identify the range of related terminology and concepts in the general field of individualisation, map out the relationships between these concepts and explore how patients' perspectives are considered. DESIGN: We consulted members of an established patient and public involvement group about their experience of medicine taking for long-term conditions and their ideas about individualisation. We then conducted a scoping review of the literature to explore how terms surrounding individualisation of drug treatment are used and defined in the literature, and to explore the extent to which patients' perspectives are represented, with a view to informing future recommendations as to how individualisation can be operationalised. METHODS: We identified relevant literature using a range of search strategies. Two researchers independently extracted definitions of terms using a template. Inductive and deductive methods were used to explore the data. RESULTS: Definitions were categorised according to the following themes: medical management; pharmacogenetics, the patient's perspective; interactions between the healthcare provider and patient and management of long-term conditions. CONCLUSIONS: Within the literature reviewed, the involvement of patients in the ongoing management of drug treatment was largely absent. We propose the use of a new term 'mutually agreed tailoring' (MAT). This describes the ongoing pharmacological management of conditions that incorporates patients' specific needs, experiences and existing strategies for using their medications, and the professionals' clinical judgement. This usually includes patients monitoring their symptoms and, with the support of the professional, making appropriate product, dose or timing adjustments as necessary. Our previous work suggests that many patients and doctors are successfully practising MAT, so we suggest that a formal description may facilitate wider utilisation of strategies that will improve patient outcomes.

There is increasing interest in the theoretical underpinning of involving patients and the public, in health research and care, as coproduces and partners.
Conducted by a participant researcher, this study theorises involvement from the perspectives of patients and members of the public. It asks: ‘What motivates and sustains patient and public involvement from the perspective of lay participants?’
Beginning from an ethical position that sees knowledge as a social product, it argues that involvement can demonstrate the public ownership of knowledge.
The study uses survey data and 31 semi structured interviews, with participants from across England, covering a wide range of involvement roles and activities. It explores what inspires and what discourages involvement and how involvement impacts on participants’ sense of identity. Theoretical approaches are interrogated asking: what would involvement look like from this perspective and how would a participant’s description of involvement be shaped by this approach? These ideas
were translated into games and stories, prompting further discussions with both public involvement participants and academics.
Building on the model of public involvement ‘knowledge spaces,’ participants’ stories are used to describe these as liminal, complex and often paradoxical spaces. Rather than the sharply defined cube, described by Gibson, Britten and Lynch, these spaces are more like bubbles, morphing and contorting in reaction to fluctuating external and internal pressures. Knowledge spaces are politically, economically and culturally situated. Within each space different modes of action, rules, and theoretical approaches may coexist. They may have multiple instrumental purposes, while using expressive modes of action. Different involvement opportunities may call for similar skills and abilities. In acting as weak
publics they may empower participation in campaigning and decision making. Conservation and change are not only matters of how organisations respond to involvement, individual participants may experience knowledge spaces as arenas through which their sense of self is maintained, transformed or reconstructed, where they connect their personal narratives to the creation of human knowledge.
The complexity of these spaces, the multiplicity of external pressures and
participant orientations, makes it all the more important for participants, (clinical, academic and lay) to reflect upon and share their own. motivations and values. This means examining drivers and pre-existing theoretical baggage to ensure that none of these obscure the appreciation of and engagement with alternate views.The pursuit of strategic aims through these spaces requires communicative action.

INTRODUCTION: Diabetes is a chronic condition associated with many long-term complications. People with diabetes need to actively manage their condition, which can be complex. In consultations with healthcare professionals, patients receive advice about their diabetes but do not always discuss things which concern them, perhaps because of the perceived limited time or embarrassment. We want to test a 'preconsultation' intervention in which the patient is supported by a healthcare assistant to complete a web-based intervention aimed at producing an agenda to help them identify important areas for discussion in the consultation. Use of this agenda may enable the patient to play a more active role in that consultation and consequently become more confident, and hence more successful, in managing their condition. METHODS AND ANALYSIS: in this pilot randomised controlled trial, 120 people with diabetes will be randomised with equal allocation to receive the intervention or usual clinical care. The primary outcome is reduction in glycosylated haemoglobin(HbA1c). Secondary outcomes are patient-reported communication, enablement, self-care activity, diabetes-dependent quality of life, empowerment, satisfaction, health-related quality of life and resource use. The aim of the pilot study was to estimate parameters to inform the design of the definitive trial. Follow-up on quantitative outcomes will be at 3 and 6 months. A nested qualitative study will collect data on the patients' experiences of producing an agenda. Resource use data and medication use will also be collected via a review of medical records for a sample of participants. ETHICS AND DISSEMINATION: Approval was granted by the NHS Research Ethics Committee North West-Preston (13/NW/0123). Dissemination will include publication of quantitative and qualitative findings, and experience of public involvement in peer-reviewed journals. Results will also be disseminated to trial participants via workshops led by lay coapplicants. TRIAL REGISTRATION: ISRCTN75070242.

Objective: to explore doctors' understanding of individualisation of drug treatments, and identify the methods used to achieve individualisation. Design: in this exploratory study, we used in-depth qualitative interviews with doctors to gain insight into their understanding of the term 'individualised treatments' and the methods that they use to achieve it. Participants: 16 general practitioners in 6 rural and 10 urban practices, 2 geriatricians and 2 clinical academics were recruited. Setting: Primary and secondary care in South West of England. Results: Understanding of individualisation varied between doctors, and their initial descriptions of individualisation were not always consistent with subsequent examples of the patients they had treated. Understandings of, and methods used to achieve, individualised treatment were frequently discussed in relation to making drug treatment decisions. Few doctors spoke of using strategies to support patients to individualise their own treatments after the consultation. Conclusions: Despite its widespread use, variation in doctors' understanding of the term individualisation highlights the need for it to be defined. Efforts are needed to develop effective methods that would offer a structured approach to support patients to manage their treatments after consultations.

Background. Promotion of self-care for persistent back pain and other long-term conditions has become a central component in health care policy in the UK, and general practitioners face increasing demands to support patients' self-care efforts. Gaining insight into patients' views may facilitate support. Objective. To describe patients' experience of self-care for long-term back pain and their views on provision of support for self-care. Methods. Adults experiencing persistent back pain were purposively sampled from a communitybased survey. In-depth qualitative interviews were audiotaped, transcribed and analysed using the constant comparative method to inductively derive a thematic account of the data. Results. Most of the 23 interviewees felt a responsibility to self-care. Individual capacity for selfcare, however, was variable and could be inhibited by factors such as caring roles or lack of diagnosis and information. GP support for self-care was largely considered to be desirable, although the feasibility of greater provision of support was questioned. Some interviewees expressed a strong preference for alternative models of care and support. Conclusion. Self-care for back pain is contextualized by the individual's capacity to self-care and preferences for support. Doubt over the ability of GPs to provide support for self-care may mean that those who have specific needs are reticent to seek help. The role of self-care in the management of back pain should be discussed openly at the consultation level, and GPs may be well placed to signpost patients and provide guidance on the safety of specific self-care activities. © the Author 2012. Published by Oxford University Press. All rights reserved.

BACKGROUND: Recent years have seen an increase in primary care workload, especially following the introduction of a new General Medical Services contract in 2004. Telephone triage and telephone consultation with patients seeking health care represent initiatives aimed at improving access to care. Some evidence suggests that such approaches may be feasible but conclusions regarding GP workload, cost, and patients' experience of care, safety, and health status are equivocal. The ESTEEM trial aims to assess the clinical- and cost-effectiveness of nurse-led computer-supported telephone triage and GP-led telephone triage, compared to usual care, for patients requesting same-day consultations in general practice. METHODS/DESIGN: ESTEEM is a pragmatic, multi-centre cluster randomised clinical trial with patients randomised at practice level to usual care, computer decision-supported nurse triage, or GP-led triage. Following triage of 350-550 patients per practice we anticipate estimating and comparing total primary care workload (volume and time), the economic cost to the NHS, and patient experience of care, safety, and health status in the 4-week period following the index same-day consultation request across the three trial conditions.We will recruit all patients seeking a non-emergency same-day appointment in primary care. Patients aged 12.0-15.9 years and temporary residents will be excluded from the study.The primary outcome is the number of healthcare contacts taking place in the 4-week period following (and including) the index same-day consultation request. A range of secondary outcomes will be examined including patient flow, primary care NHS resource use, patients' experience of care, safety, and health status.The estimated sample size required is 3,751 patients (11,253 total) in each of the three trial conditions, to detect a mean difference of 0.36 consultations per patient in the four week follow-up period between either intervention group and usual care 90% power, 5% alpha, and an estimated intracluster correlation coefficient ICC of 0.05. The primary analysis will be based on the intention-to-treat principle and take the form of a random effects regression analysis taking account of the hierarchical nature of the study design. Statistical models will allow for adjustment for practice level minimisation variables and patient-level baseline covariates shown to differ at baseline. TRIAL REGISTRATION: Current Controlled Trials ISCRTN20687662.

Objective: Our aim was to synthesise qualitative literature about the perceived impact and experience of participating in peer support interventions for individuals with chronic disease. Methods: We carried out a meta-ethnography to synthesize 25 papers meeting specific inclusion criteria. Results: Thirteen concepts were identified that reflected participants' perceptions of the experience and impact of intervention participation. These were brought together in a conceptual model that highlighted both positive and negative perceptions, while also indicating if specific experiences and impacts had greater pertinence for mentors, mentees, or were mutually experienced. Conclusion: Although peer support interventions may establish uneven power relationships between mentors and mentees, there is also potential for initially asymmetrical relationships to become more symmetrical over time. Our synthesis suggests that emotional support is particularly valued when delivered under conditions that do not merely reproduce biomedical hierarchies of power. Practice implications: This synthesis suggests that those developing and implementing peer support interventions need to be sensitive to their potential negative effects. They will need to manage the tension between the hierarchical and egalitarian aspects of peer support interventions, and consider the impact on both mentors and mentees. © 2013 Elsevier Ireland Ltd.

Pharmacovigilance is a social as well as a technical task. The production of data on new adverse drug reactions (ADRs) depends on the reporting of problems by patients to their health-care practitioners and on the quality of the patient-practitioner relationship. If prescribers ignore or dismiss patients' reports, some people may be spurred to report potential ADRs to the regulatory authorities, while others may draw the conclusion that their attributions were unfounded. Trust in health-care systems such as pharmacovigilance requires more open and honest communication during the patient-professional encounter. Patients generally want more balanced information about their medicines than they receive. © 2012 John Wiley & Sons, Ltd.

The aim of meta-ethnography is to arrive at an interpretation that is greater than that offered by the individual studies making up its constituent parts. It is the translative aspect that distinguishes meta-ethnography from other methods for qualitative synthesis. The worked example we use to illustrate this approach is on lay beliefs about medicine-taking for asthma, which was part of a broader synthesis which included other kinds of medicines for a range of other diseases and conditions. © 2012 John Wiley & Sons, Ltd.

Parkinson's disease (PD) can cause both motor speech and cognitive deficits, with those affected perceiving a negative effect on their everyday experiences of communication. One specific concern reported by people with PD is that people "talk over" them. Psychosocial reactions to communication changes in PD are highly individualized and do not correlate strongly with measures of disease severity. With the aim of developing a better understanding of the individual's everyday experience of being talked over, this study uses Conversation Analysis to examine videoed instances of naturally occurring overlapping talk. Two phenomena emerge. First, aspects of speech specific to PD can cause overlap, which in turn leads to the need for repair. Second, opportunities to repair disordered talk, further compromised in terms of intelligibility by overlap, are often not followed up. This leads to the deletion of PD turns at talk and therefore reduced participation in conversations. The implications of these phenomena for both client well-being and clinical interventions are discussed.

This article describes a qualitative synthesis of published research on cancer patients' experiences of complementary therapies. We conducted a systematic search for qualitative studies on this subject published between 1998 and 2007. Twenty-six refereed journal articles met the inclusion criteria. These 26 articles were repeatedly read by the research team and key concepts emerging from them were identified. Differences and variations were examined in association with treatment, therapy type and by stage of cancer (early stage, mid-treatment, advanced cancer, palliative care and long term 'survivors'). Six overarching concepts were located, which describe the key aspects of patients' experiences of the use of complementary and alternative medicine after a diagnosis of cancer: Connection; Control; Well-being; Transformation; Integration; and Polarization. These are described in a 'line of argument' synthesis, and differences associated with treatment type and stage of disease are noted. The findings are presented in a table showing the six concepts according to treatment type and stage; as a composite story; and in a diagrammatic model showing the individual, practitioner and organizational levels. The synthesis identified various specific ways in which complementary therapies supported cancer patients, as well as occasional negative effects. The most notable barrier was the perceived polarization of complementary therapies and biomedicine; patients reported better experiences in integrated settings.

Patient and public involvement (PPI) is now firmly embedded in the policies of the Department of Health in England. This article commences with a review of the changing structures of PPI in English health and social care, largely in terms of their own explicit rationales, using that as a spring board for the development of a general theoretical framework. Arguing that all democratic states face major dilemmas in seeking to meet conflicting demands and expectations for involvement, we identify the diverse and sometimes conflicting cultural and political features embedded in current models of involvement in England, in a context of rapid delegitimation of the wider political system. We identify some of the major inherent weaknesses of a monolithic, single-track model of patient and public involvement in the management and running of health and social care systems. Although the mechanisms and methods for delivering this may vary we suggest the model remains fundamentally the same. We also suggest why the current structures are unlikely to provide an effective response either to the pluralism of values, ideologies and social groups engaged in the sector or to the valuing of lay knowledge which could potentially sustain the social networks essential for effective participation and service improvement. The article proposes a four dimensional framework for analysing the nature of PPI. These dimensions, it is argued, provide the co-ordinates along which new 'knowledge spaces' for PPI could be constructed. These knowledge spaces could facilitate and support the emergence of social networks of knowledgeable actors capable of engaging with professionals on equal terms and influencing service provision.

BACKGROUND: Medically unexplained physical symptoms (MUPS) are common and difficult to treat. AIM: to investigate the effectiveness of adding five-element acupuncture to usual care in 'frequent attenders' with MUPS. DESIGN AND SETTING: Randomised controlled trial in four London general practices. METHOD: Participants were 80 adults with MUPS, consulting GPs ≥8 times/year. The intervention was individualised five-element acupuncture, ≥12 sessions, immediately (acupuncture group) and after 26 weeks (control group). The primary outcome was 26-week Measure Yourself Medical Outcome Profile (MYMOP); secondary outcomes were wellbeing (W-BQ12), EQ-5D, and GP consultation rate. Intention-to-treat analysis was used, adjusting for baseline outcomes. RESULTS: Participants (80% female, mean age 50 years, mixed ethnicity) had high health-resource use. Problems were 59% musculoskeletal; 65% >1 year duration. The 26-week questionnaire response rate was 89%. Compared to baseline, the mean 26-week MYMOP improved by 1.0 (95% confidence interval [CI] = 0.4 to 1.5) in the acupuncture group and 0.6 (95% CI = 0.3 to 0.9) in the control group (adjusted mean difference: acupuncture versus control -0.6 [95% CI = -1.1 to 0] P = 0.05). Other between-group adjusted mean differences were: W-BQ12 4.4 (95% CI = 1.6 to 7.2) P = 0.002; EQ-5D index 0.03 (95% CI = -0.11 to 0.16) P = 0.70; consultation rate ratio 0.90 (95% CI = 0.70 to 1.15) P = 0.4; and number of medications 0.56 (95% CI = 0.47 to 1.6) P = 0.28. All differences favoured the acupuncture group. Imputation for missing values reduced the MYMOP adjusted mean difference to -0.4 (95% CI = -0.9 to 0.1) P = 0.12. Improvements in MYMOP and W-BQ12 were maintained at 52 weeks. CONCLUSION: the addition of 12 sessions of five-element acupuncture to usual care resulted in improved health status and wellbeing that was sustained for 12 months.

BACKGROUND: Although the UK Department of Health has advocated the involvement of service users and carers in health research for several years, there is little evidence about their contribution to the design of randomized controlled trials (RCTs). OBJECTIVE: to demonstrate how consulting parents about the design of a study, including which outcomes to use, led to the design and successful delivery of a RCT of osteopathy for children with cerebral palsy (CP). DESIGN: Semi-structured interviews were carried out with 20 parents of children with CP and other neurological conditions, asking them to choose between four different trial designs, to talk about noticeable changes in their child's condition and their views about payment for trial treatment. SETTING AND PARTICIPANTS: the parents interviewed were all members of Cerebra, a charity for 'brain-injured' children and young people. All interviews were carried out at the parents' homes. RESULTS: Parents had mixed views about possible trial designs; however, a waitlist design which allowed all children eventually to receive the treatment emerged as a clear favourite. Parents did not focus on isolated outcomes, but suggested a range of factors relevant to their child's quality of life. They expressed a clear preference for the costs of treatment to be funded by the trial. CONCLUSIONS: Involvement of parents helped design a trial which was acceptable to families and addressed outcomes that mattered to them. By consulting parents about the design of the research, the subsequent trial achieved excellent recruitment and retention rates.

OBJECTIVES: to estimate the effect of cranial osteopathy on the general health and wellbeing, including physical functioning, of children with cerebral palsy. DESIGN: Pragmatic randomised controlled trial. PARTICIPANTS: 142 children from Greater London and the South West of England, aged 5-12 years with cerebral palsy. INTERVENTION: Participants were randomised to six sessions of cranial osteopathy with a registered osteopath or a waiting list with partial attention control (parents invited to participate in two semistructured interviews). PRIMARY OUTCOME MEASURES: Blind assessment of motor function by physiotherapists using the Gross Motor Function Measure-66 (GMFM-66) and quality of life using the Child Health Questionnaire (CHQ) PF50 at 6 months. SECONDARY OUTCOME MEASURES: Parents' assessment of global health and sleep at 6 months, pain and sleep diaries at 10 weeks and 6 months, CHQ PF50 at 10 weeks and quality of life of main carer (Short Form 36) at 10 weeks and 6 months. RESULTS: Compared with children in the control group, children in the osteopathy group demonstrated no statistically significant differences in GMFM-66 (mean difference 4.9, 95% CI -4.4 to 14.1), CHQ Physical Summary Score (mean difference 2.2, 95% CI -3.5 to 8.0) or CHQ Psychological Summary Score (mean difference 3.4, 95% CI -0.8 to 7.7). There were no significant differences between groups with respect to pain; sleep (either 'time asleep' or 'time to sleep'); or main carer's quality of life. Compared with children in the control group, carers of children receiving cranial osteopathy were nearly twice as likely to report that their child's global health had 'improved' at 6 months rather than 'decreased' or 'remained the same' (38% vs 18%; odds ratio 2.8, 95% CI 1.1 to 6.9). CONCLUSIONS: This trial found no statistically significant evidence that cranial osteopathy leads to sustained improvement in motor function, pain, sleep or quality of life in children aged 5-12 years with cerebral palsy nor in quality of life of their carers.

Background: Methods for reviewing and synthesising findings from quantitative research studies in health care are well established. Although there is recognition of the need for qualitative research to be brought into the evidence base, there is no consensus about how this should be done and the methods for synthesising qualitative research are at a relatively early stage of development. Objective: to evaluate meta-ethnography as a method for synthesising qualitative research studies in health and health care. Methods: Two full syntheses of qualitative research studies were conducted between April 2002 and September 2004 using meta-ethnography: (1) studies of medicine-taking and (2) studies exploring patients' experiences of living with rheumatoid arthritis. Potentially relevant studies identified in multiple literature searches conducted in July and August 2002 (electronically and by hand) were appraised using a modified version of the Critical Appraisal Skills Programme questions for understanding qualitative research. Candidate papers were excluded on grounds of lack of relevance to the aims of the synthesis or because the work failed to employ qualitative methods of data collection and analysis. Results: Thirty-eight studies were entered into the medicine-taking synthesis, one of which did not contribute to the final synthesis. The synthesis revealed a general caution about taking medicine, and that the practice of lay testing of medicines was widespread. People were found to take their medicine passively or actively or to reject it outright. Some, in particular clinical areas, were coerced into taking it. Those who actively accepted their medicine often modified the regimen prescribed by a doctor, without the doctor's knowledge. The synthesis concluded that people often do not take their medicines as prescribed because of concern about the medicines themselves. 'Resistance' emerged from the synthesis as a concept that best encapsulated the lay response to prescribed medicines. It was suggested that a policy focus should be on the problems associated with the medicines themselves and on evaluating the effectiveness of alternative treatments that some people use in preference to prescribed medicines. The synthesis of studies of lay experiences of living with rheumatoid arthritis began with 29 papers. Four could not be synthesised, leaving 25 papers (describing 22 studies) contributing to the final synthesis. Most of the papers were concerned with the everyday experience of living with rheumatoid arthritis. This synthesis did not produce significant new insights, probably because the early papers in the area were substantial and theoretically rich, and later papers were mostly confirmatory. In both topic areas, only a minority of the studies included in the syntheses were found to have referenced each other, suggesting that unnecessary replication had occurred. Limitations: We only evaluated meta-ethnography as a method for synthesising qualitative research, but there are other methods being employed. Further research is required to investigate how different methods of qualitative synthesis influence the outcome of the synthesis. Conclusions: Meta-ethnography is an effective method for synthesising qualitative research. The process of reciprocally translating the findings from each individual study into those from all the other studies in the synthesis, if applied rigorously, ensures that qualitative data can be combined. Following this essential process, the synthesis can then be expressed as a 'line of argument' that can be presented as text and in summary tables and diagrams or models. Meta-ethnography can produce significant new insights, but not all meta-ethnographic syntheses do so. Instead, some will identify fields in which saturation has been reached and in which no theoretical development has taken place for some time. Both outcomes are helpful in either moving research forward or avoiding wasted resources. Meta-ethnography is a highly interpretative method requiring considerable immersion in the individual studies to achieve a synthesis. It places substantial demands upon the synthesiser and requires a high degree of qualitative research skill. Meta-ethnography has great potential as a method of synthesis in qualitative health technology assessment but it is still evolving and cannot, at present, be regarded as a standardised approach capable of application in a routinised way. Funding: Funding for this study was provided by the Health Technology Assessment programme of the National Institute for Health Research. © Queen's Printer and Controller of HMSO 2011.

BACKGROUND: Around 70% of people who develop Parkinson's disease (PD) experience speech and voice changes. Clinicians often find that when asked about their primary communication concerns, PD clients will talk about the difficulties they have 'getting into' conversations. This is an important area for clients and it has implications for quality of life and clinical management. AIMS: to review the extant literature on PD and communication impairments in order to reveal key topic areas, the range of methodologies applied, and any gaps in knowledge relating to PD and social interaction and how these might be usefully addressed. METHODS & PROCEDURES: a systematic search of a number of key databases and available grey literatures regarding PD and communication impairment was conducted (including motor speech changes, intelligibility, cognitive/language changes) to obtain a sense of key areas and methodologies applied. Research applying conversation analysis in the field of communication disability was also reviewed to illustrate the value of this methodology in uncovering common interactional difficulties, and in revealing the use of strategic collaborative competencies in naturally occurring conversation. In addition, available speech and language therapy assessment and intervention approaches to PD were examined with a view to their effectiveness in promoting individualized intervention planning and advice-giving for everyday interaction. MAIN CONTRIBUTION: a great deal has been written about the deficits underpinning communication changes in PD and the impact of communication disability on the self and others as measured in a clinical setting. Less is known about what happens for this client group in everyday conversations outside of the clinic. Current speech and language therapy assessments and interventions focus on the individual and are largely impairment based or focused on compensatory speaker-oriented techniques. A conversation analysis approach would complement basic research on what actually happens in everyday conversation for people with PD and their co-participants. CONCLUSIONS & IMPLICATIONS: the potential benefits of a conversation analysis approach to communication disability in PD include enabling a shift in clinical focus from individual impairment onto strategic collaborative competencies. This would have implications for client-centred intervention planning and the development of new and complementary clinical resources addressing participation. The impact would be new and improved support for those living with the condition as well as their families and carers.

OBJECTIVE: to contribute to the debate about the value of qualitative research in health care by discussing three key issues in relation to qualitative research on health communication. METHODS: As this paper does not report the results of a primary research study or a secondary analysis, no formal search strategy was employed to identify the cited papers; many other published papers would have made the same points just as well. RESULTS: the key issues are illustrated using a range of published studies drawn from the health care communication literature. The paper describes the range of outputs generated by qualitative research; illustrates different ways in which qualitative and quantitative methods can be combined; and shows the contribution of qualitative syntheses. CONCLUSIONS: Greater conceptual development and explanatory power may be achieved both by more ambitious primary studies and the conduct of more qualitative syntheses. The synthesis of qualitative research also offers the opportunity to build up a cumulative evidence base. PRACTICE IMPLICATIONS: the further development of methods of qualitative synthesis will be enhanced if qualitative researchers place greater emphasis on explanation rather than description; cite each other's work more often and conduct more syntheses; and continue to contribute to mixed methods studies.

BACKGROUND: Self-care is a key component of current policies to manage long term conditions. Although most people with long-term health problems care for themselves within lay networks, consultation rates for long-term undifferentiated illness remain high. Promotion of self-care in these individuals requires an understanding of their own self-care practices and needs to be understood in the context of health care pluralism. The aim was to investigate the extent and nature of self-care practices in patients experiencing long term health problems, sources of information used for self-care, and use of other forms of health care (conventional health care and complementary and alternative medicine). METHODS: the study involved a cross-sectional community-based survey set in three general practices in South West England: two in urban areas, one in a rural area. Data were collected using a postal questionnaire sent to a random sample of 3,060 registered adult patients. Respondents were asked to indicate which of six long term health problems they were experiencing, and to complete the questionnaire in reference to a single (most bothersome) problem only. RESULTS: of the 1,347 (45% unadjusted response rate) who responded, 583 reported having one or more of the six long term health problems and 572 completed the survey questionnaire. Use of self-care was notably more prevalent than other forms of health care. Nearly all respondents reported using self-care (mean of four self-care practices each). Predictors of high self-care reported in regression analysis included the reported number of health problems, bothersomeness of the health problem and having received a diagnosis. Although GPs were the most frequently used and trusted source of information, their advice was not associated with greater use of self-care. CONCLUSIONS: This study reveals both the high level and wide range of self-care practices undertaken by this population. It also highlights the importance of GPs as a source of trusted information and advice. Our findings suggest that in order to increase self-care without increasing consultation rates, GPs and other health care providers may need more resources to help them to endorse appropriate self-care practices and signpost patients to trusted sources of self-care support.

BACKGROUND: People with medically unexplained physical symptoms (MUPS) are helped by interventions that combine physical and psychological explanations and treatment. Traditional acupuncture may offer such a perspective, but its use for these patients has not been investigated. AIM: to ascertain how patients with MUPS perceive and experience five-element acupuncture treatment. DESIGN AND SETTING: a longitudinal qualitative interview study, nested in a randomised controlled trial was carried out in four general practices in socioeconomically diverse areas of London. METHOD: a purposive sample of 20 trial participants was interviewed twice, at the start and the end of 6 months of acupuncture treatment. Semi-structured interviews were transcribed, coded, and analysed thematically, summarising both across-case as themes and within-case individual vignettes. RESULTS: Acupuncture, initially accepted as 'just another referral' - one like many others that had been tried and proved unsuccessful - was valued for the amount of time allotted with a caring practitioner who listened and responded, as well as for the interactive and holistic nature of the sessions. These attributes encouraged many patients to take an active role in their treatment, including making cognitive or behavioural lifestyle changes. Interviewees cited a wide range of changes in their health that spanned physical, psychological, and social dimensions. These were largely positive and included an increase in physical and/or mental energy, as well as feelings of greater personal control, calmness, and relaxation. Three interviewees reported worsening health but did not ascribe this to acupuncture. CONCLUSION: Many patients who were treated with five-element acupuncture perceived a range of positive effects and appeared to take on a more active role in consultations and self-care.

OBJECTIVE: the use of complementary therapies by people with cancer is commonplace. In a recent synthesis of 26 qualitative studies of patients' experiences of complementary therapy use after a diagnosis of cancer, the emergent theme of 'polarization' was the most notable barrier to a positive experience of complementary therapies. In this paper, we explore the two synthesis concepts of 'polarization' and 'integration', and their relationship to health service policies and guidelines on integrated services. METHODS: a systematic literature search and a meta-ethnography to synthesize key concepts. RESULTS: the majority of patients who used complementary therapies after a diagnosis of cancer wanted to be certain that the therapies were not interfering with their conventional cancer treatment. They valued the therapies in wider terms including: taking 'a niche of control', relieving symptoms, improving wellbeing, and promoting reconnection and social interaction. The emergent theme of 'polarization' suggested that conventional physicians who are perceived to be poorly informed or negative about complementary approaches induce patient anxiety, safety concerns, and difficulties in access. They may compromise their therapeutic relationship and, rarely, they may trigger patients to abandon conventional medicine altogether. In contrast, integrated advice and/or services were highly valued by patients, although some patients preferred their complementary health care to be provided in a non-medicalized environment. CONCLUSIONS: Our findings suggest that the current polarized situation is unhelpful to patients, detrimental to therapeutic relationships and may occasionally be dangerous. They indicate that complementary therapies, in a supportive role, should be integrated into mainstream cancer care.

BACKGROUND: to explore the health beliefs, experiences, treatment and expectations of people with chronic knee pain, and investigate if, how and why these change after taking part on an integrated exercise-based rehabilitation programme--Enabling Self-management and Coping with Arthritis knee Pain through Exercise, ESCAPE-knee pain. METHODS: Semi-structured interviews were conducted with people with chronic knee pain, before (n=29) and after (n=23) participation on the programme. Thematic analysis was used to document people's baseline health beliefs, attitudes and cognitions, and to see if how and why these changed after completing the programme. RESULTS: Initially people had poor understanding and negative, fatalistic beliefs about the management or prognosis for knee pain. Following the programme the majority of participants had positive experiences describing improvement in pain, physical and psychosocial functioning, greater knowledge and understanding of their condition and treatment options, and in their ability to use exercise to control symptoms. Beliefs about the causation and prognosis of knee pain were unchanged, but their concerns about possible dangers of exercise had decreased, they appreciated how exercise could reduce symptoms (treatment beliefs) and their confidence in their ability to use exercise to effect improvements (exercise self-efficacy) increased. These improvements were attributed to the content and structure of the programme, and the care and guidance of the physiotherapist. Several expressed a need for on-going support. CONCLUSIONS: ESCAPE-knee pain appears to achieve improvements by increasing people's treatment belief in safety and the utility of exercise to control symptoms, rather than alteration in their beliefs about causation or prognosis. TRIAL REGISTRATION: Current Controlled Trials ISRCTN94658828.

Genomics researchers and policy makers have accused nutrigenetic testing companies--which provide DNA-based nutritional advice online--of misleading the public. The UK and USA regulation of the tests has hinged on whether they are classed as "medical" devices, and alternative regulatory categories for "lifestyle" and less-serious genetic tests have been proposed. This article presents the findings of a qualitative thematic analysis of the webpages of nine nutrigenetic testing companies. We argue that the companies, mirroring and negotiating the regulatory debates, were creating a new social space for products between medicine and consumer culture. This space was articulated through three themes: (i) how "genes" and tests were framed, (ii) how the individual was imagined vis a vis health information, and (iii) the advice and treatments offered. The themes mapped onto four frames or models for genetic testing: (i) clinical genetics, (ii) medicine, (iii) intermediate, and (iv) lifestyle. We suggest that the genomics researchers and policy makers appeared to perform what Gieryn (Gieryn, T.F. (1983). Boundary-work and the demarcation of science from non-science: strains and interests in professional ideologies of scientists. American Sociological Review, 48, 781-795.) has termed "boundary work", i.e. to delegitimize the tests as outside proper medicine and science. Yet, they legitimated them, though in a different way, by defining them as lifestyle, and we contend that the transformation of the boundaries of science into a creation of such hybrid or compromise categories is symptomatic of current historical times. Social scientists studying medicine have referred to the emergence of "lifestyle" products. This article contributes to this literature by examining the historical, regulatory and marketing processes through which certain goods and services become defined this way.

In this paper it is argued that evidence-based medicine (EBM) is a social movement as well as a scientific enterprise, and that as such it requires qualitative investigation of its various activities to understand its impact and take-up. Randomised controlled trials (RCTs) are a blunt instrument of assessing whether interventions achieve intended or unintended outcomes, or whether they are acceptable to those they are aimed at. To understand the success or failure of evidence-based interventions, it is necessary to investigate practitioners' acceptance of, or resistance to, EBM. This involves exploration of the perceived relationships between practical clinical knowledge derived from everyday practice and scientific knowledge. The implementation of best evidence also requires the acknowledgement of local contextual factors. The goals of EBM will not be achieved if patients do not accept the advice and prescriptions they are given by professionals. One of the reasons that some professionals find it difficult to use the results of RCTs in their clinical practice is because they are aware of patients' differing priorities and life experiences. If we accept that EBM is a social movement, then the methods needed to investigate its activities are those of the social sciences, including qualitative methods. © the Author(s) 2010.

This article reports the results of a synthesis of qualitative research articles about lay perspectives on prescribed psychotropic medicines. It updates and elaborates on a model of medicine-taking developed by Pound and colleagues. In this model, the concept of resistance refers to the various ways in which people take prescribed medicines while trying to minimise their intake. The synthesis included 12 papers published since 1992. The findings are presented at the societal level, in terms of the social meanings of mental health problems and medication, and at the individual level; the latter covers active engagement and lay evaluation, as well as the outcomes of evaluation, including the doctor-patient relationship. Although it can be difficult to achieve in the current clinical environment, there is much scope for developing more concordant relationships with patients in relation to prescribing and using psychotropic medicines.

AIMS: Recent studies suggest a worryingly high proportion of final year medical students and new doctors feel unprepared for effective and safe prescribing. Little research has been undertaken on UK junior doctors to see if these perceptions translate into unsafe prescribing practice. We aimed to measure the performance of foundation year 1 (FY1) doctors in applying clinical pharmacology and therapeutics (CPT) knowledge and prescribing skills using standardized clinical cases. METHODS: a subject matter expert (SME) panel constructed a blueprint, and from these, twelve assessments focusing on areas posing high risk to patient safety and deemed as essential for FY1 doctors to know were chosen. Assessments comprised six extended matching questions (EMQs) and six written unobserved structured clinical examinations (WUSCEs) covering seven CPT domains. Two of each assessment types were administered over three time points to 128 FY1 doctors. RESULTS: the twelve assessments were valid and statistically reliable. Across seven CPT areas tested 51-75% of FY1 doctors failed EMQs and 27-70% failed WUSCEs. The WUSCEs showed three performance trends; 30% of FY1 doctors consistently performing poorly, 50% performing around the passing score, and 20% performing consistently well. Categorical rating of the WUSCEs revealed 5% (8/161) of scripts contained errors deemed as potentially lethal. CONCLUSIONS: This study showed that a large proportion of FY1 doctors failed to demonstrate the level of CPT knowledge and prescribing ability required at this stage of their careers. We identified areas of performance weakness that posed high risk to patient safety and suggested ways to improve the prescribing by FY1 doctors.

Here we discuss 15 recommendations for reducing the risks of medication errors: 1. Provision of sufficient undergraduate learning opportunities to make medical students safe prescribers. 2. Provision of opportunities for students to practise skills that help to reduce errors. 3. Education of students about common types of medication errors and how to avoid them. 4. Education of prescribers in taking accurate drug histories. 5. Assessment in medical schools of prescribing knowledge and skills and demonstration that newly qualified doctors are safe prescribers. 6. European harmonization of prescribing and safety recommendations and regulatory measures, with regular feedback about rational drug use. 7. Comprehensive assessment of elderly patients for declining function. 8. Exploration of low-dose regimens for elderly patients and preparation of special formulations as required. 9. Training for all health-care professionals in drug use, adverse effects, and medication errors in elderly people. 10. More involvement of pharmacists in clinical practice. 11. Introduction of integrated prescription forms and national implementation in individual countries. 12. Development of better monitoring systems for detecting medication errors, based on classification and analysis of spontaneous reports of previous reactions, and for investigating the possible role of medication errors when patients die. 13. Use of IT systems, when available, to provide methods of avoiding medication errors; standardization, proper evaluation, and certification of clinical information systems. 14. Nonjudgmental communication with patients about their concerns and elicitation of symptoms that they perceive to be adverse drug reactions. 15. Avoidance of defensive reactions if patients mention symptoms resulting from medication errors.

AIM: This paper is a report of a systematic review and meta-ethnography of the experience of heavy menstrual bleeding. BACKGROUND: Heavy menstrual bleeding is common. Not all women seeking help have heavy menstrual bleeding as measured objectively and, conversely, some who do have this problem do not seek help. DATA SOURCES: Seven electronic databases were searched in 2004 and updated in 2008, and supplemented with hand-searching. METHOD: We identified four papers describing qualitative research among women with heavy menstrual bleeding. Key themes and concepts were extracted and synthesised using meta-ethnography, the key process of which is translation, identifying similar or contradictory findings in primary research. In the updated search three papers were identified. FINDINGS: Three papers were largely descriptive. These provided support for the fourth paper's conceptual framework of a lay model of heavy menstrual bleeding which shows little overlap with the traditional clinical definition. Details of physical, practical and emotional elements of this model were identified. A matrix of uncertainties were identified suggesting reasons why women may or may not seek medical help for heavy menstrual bleeding. Women and healthcare professionals may conspire to privilege blood loss over other symptoms and the disease model of heavy menstrual bleeding is little help to either. Two papers from the updated search were also largely descriptive. The third interpreted key elements of the lay model as relating to the need for concealment demanded by 'menstrual etiquette'. CONCLUSION: a lay model of heavy menstrual bleeding is proposed, detailing key physical, social and emotional impacts that women find problematic.

BACKGROUND: the value of consumer involvement in health services research is widely recognized. While there is a growing body of evidence about the principles of good consumer involvement, there is little research about the effect that involvement can have on the research. This evaluation assessed the level and impact of consumer involvement in the London Primary Care Studies Programme (LPCSP), all of whose individual projects had to demonstrate substantial involvement as a condition of funding. OBJECTIVE: to evaluate consumer involvement in the LPSCP and understand what impact consumers had on the research process and outcomes. METHODS: a multi-method case study approach was undertaken, using survey techniques, interviews, focus groups, observation and scrutiny of written documents. The overall data set comprised 61 questionnaires, 44 semi-structured interviews, 2 focus groups and 15 hours of observation of meetings. Eleven primary care-based research projects which together made up the LPCSP. RESULTS: an in-depth description of consumer involvement in the Programme was produced. Nine projects had consumers as co-applicants, four projects had been completed before the evaluation began and one was still ongoing at the time of the evaluation. of the eight projects which have produced final reports, all met their aims and objectives. Consumers had had an additional impact in the research, in the initial design of the study, in recruitment of the research subjects, in developing data collection tools, in collecting the data, in analysis and disseminating the findings. CONCLUSIONS: Consumer involvement in National Health Service research is a relatively recent policy development and while there is an increasing amount of literature about how and why consumers should be involved in research, there is less evidence about the impact of such involvement. This evaluation provides evidence about the impact that consumers have not only on the research process but also on the outcomes of the research.

OBJECTIVES: to characterize the diverse nature of peoples' experiences of acupuncture treatment for chronic health problems. Specifically, the paper addresses how this analysis deepens our understanding of holism and its relation to the therapeutic theory base. METHODS: a secondary analysis of five longitudinal interview studies using a constant comparative method. Patients experienced different types of acupuncture--traditional (based on Chinese medicine) and Western-style (based on biomedicine) in a variety of settings in the U.K. and Australia. RESULTS: the markedly different experiences of acupuncture treatment were best characterized in relation to the concept of holism. Being treated ;as a whole person' was associated with traditional acupuncture in both private and NHS practice, but not within a research trial setting. In the trial, both patients and practitioners ;played their part' in a scientific experiment. Holism was especially important to people with several health problems. DISCUSSION: the findings suggests that the experience of holistic care, in the sense of ;being treated as a whole person' is dependent on four factors: (a) the therapeutic theory that underpins the treatment; (b) structural factors such as time and setting; (c) the intention of the practitioner; and (d) the intention and needs of the patient.

AIMS: the project aimed to describe the perceptions of consultant diabetologists about their work, explore models of care, identify problem areas, consider potential solutions, and outline strategic issues for retention and recruitment. METHODS: the study was based on semistructured qualitative interviews with 92 consultant diabetologists, recruited via a purposive sample. Interviews were recorded, transcribed and anonymized, and analysed by the project team, assisted by QSR Nvivo software. RESULTS: the consultant diabetologist role encompasses a diversity of skills/expertise, with differing emphases between individuals. Integration with general medicine is seen by some as crucial to maintaining proficiency in diabetes, and by others as hindering fulfilment of other roles. Successful team working across organizational boundaries is recognized as essential to effective services, but often impeded by the continuous reorganization and competitive culture of the National Health Service. Significant differences between consultant diabetologist perspectives of primary care colleagues and of primary care trusts emerged. Some consultants have adopted innovative working approaches, adapting national guidance to local environments, but there is general resistance to adopting centrally imposed solutions. Training programmes are not sufficiently explicit about the core skills/attributes required of consultant diabetologists. CONCLUSIONS: the skills of specialist teams are not fully exploited. Competing calls on time could be addressed by encouraging multifaceted consultant teams, allowing individuals to concentrate in specific areas. Clear definition of core skills required by consultant diabetologists underpins training programme development. Collaboration in cross-boundary services reflecting local needs is impeded by competition between sectors. Protected time is necessary for cultivating multidisciplinary teams, cross-boundary partnerships and effective, relevant education programmes. Specialist training must reflect the changing role of consultant diabetologists, and include role-specific programmes.

BACKGROUND: Patients vary in their desire to be involved in decisions about their care. AIM: to assess the accuracy and impact of GPs' perceptions of their patients' desire for involvement. DESIGN OF STUDY: Consultation-based study. SETTING: Five primary care centres in south London. METHOD: Consecutive patients completed decision-making preference questionnaires before and after consultation. Eighteen GPs completed a questionnaire at the beginning of the study and reported their perceptions of patients' preferences after each consultation. Patients' satisfaction was assessed using the Medical Interview Satisfaction Scale. Analyses were conducted in 190 patient-GP pairs that identified the same medicine decision about the same main health problem. RESULTS: a total of 479 patients participated (75.7% of those approached). Thirty-nine per cent of these patients wanted their GPs to share the decision, 45% wanted the GP to be the main (28%) or only (17%) decision maker regarding their care, and 16% wanted to be the main (14%) or only (2%) decision maker themselves. GPs accurately assessed patients' preferences in 32% of the consultations studied, overestimated patients' preferences for involvement in 45%, and underestimated them in 23% of consultations studied. Factors protective against GPs underestimating patients' preferences were: patients preferring the GP to make the decision (odds ratio [OR] 0.2 per point on the five-point scale; 95% confidence interval [CI] = 0.1 to 0.4), and the patient having discussed their main health problem before (OR 0.3; 95% CI = 0.1 to 0.9). Patients' educational attainment was independently associated with GPs underestimation of preferences. CONCLUSION: GPs' perceptions of their patients' desire to be involved in decisions about medicines are inaccurate in most cases. Doctors are more likely to underestimate patients' preferred level of involvement when patients have not consulted about their condition before.

BACKGROUND: What the patient wants from a general practice consultation and what the doctor believes they want are not always the same thing. This mismatch may lead to unwanted and unnecessary prescribing. AIM: to study the effect of a one-page form completed by patients before their consultation and given to the doctor at the start of the consultation, in terms of a reduction in prescribing, satisfaction with the consultation and adherence with prescribed medication. DESIGN: Randomized controlled trial. SETTING: Ten general practices in Devon and Dorset, UK. METHODS: Unselected patients attending general practice appointments were randomised to receive (or not) a self-completed agenda form (SCAF) asking five questions, including whether the patient considered they should receive a prescription. RESULTS: Approximately 4125 patients were offered entry; 3124 (76%) agreed to randomisation. In 1783 (57%) of these prescribing or satisfaction outcomes were identified. 457 of 811 (56.4%) of SCAF patients received a prescription, at a median (IQR) cost of pound 5.60 (inter-quartile range pound 2.12- pound 16.10), compared with 418 of 799 (52.3%) of controls, at a median cost of pound 5.94 ( pound 2.46- pound 18.90); both results non-significant (P=0.10 for prescribing and 0.30 for cost). Satisfaction was also similar in both groups: mean satisfaction score in SCAFs 5.37 and in controls 5.40 (P=0.64), as was adherence: at 12 weeks, adherence of 75% or greater was reported by 92 of 136 SCAF patients (68%) and 105 of 145 controls (72%) (P=0.31). CONCLUSION: the negative result could have two explanations. Either the intervention did not achieve the intention of communicating the patients' agendas, or if it did, patients may have been persuaded by doctors' explanations in the consultation.

OBJECTIVE: to explore primary care practitioners approach to and management of menstrual disorders using a sociological perspective. METHODS: Semi-structured interviews of primary care practitioners with an iterative approach to recruitment and analysis informed by grounded theory. RESULTS: Two broad approaches to patient care were described-a biomedical approach, which concentrated on medical history taking and the search for disease, and a patient-as-person approach where a patient's individual ideas and concerns were elicited. Practitioners believed they had a role in integrating these approaches. Activities intrinsic to the biomedical approach such as the performance of examinations, the ordering of tests and making decisions about biomedical aspects of care were however not available for shared decision-making. The exercise of these decisions by medical practitioners was necessary for them to achieve their professional identity. CONCLUSION: While practitioners accepted the ideology of patient-centred care the biomedical approach had the advantage of providing practitioners with a professional identity, which protected their status in relation to patients and colleagues. PRACTICE IMPLICATIONS: the adoption of shared decision-making by medically qualified primary care practitioners is limited by practitioners need to achieve their medical identity. At present, this identity does not involve significant sharing of power and responsibility. A shift in perception of medical identity is required before more shared decision-making is seen in practice.

Background. Patients commonly experience palpable effects from antihypertensives. Few studies have examined patients' experiences of these effects and how they influence patients' behaviour and medicine-taking. Objectives. To describe the palpable effects that patients attribute to their antihypertensive tablets and the ways that they react to them. Methods. In depth interviews with a maximum variety sample of 38 patients taking antihypertensive medication in 2 mainly urban UK general practices. Qualitative analysis based upon the study's objectives. Results. Most patients attributed palpable effects to their antihypertensives. Some effects were welcome, attributed to lowered blood pressure or a calming effect of tablets, but others were unwelcome. As a result of these, some patients stopped their tablets, but more continued taking tablets as usual, took their tablets in a different way, or countered unwelcome effects by some other means. Although patients discussed stopping tablets with their doctor, they commonly did not discuss other reactions. Patients who accepted persistent unwelcome effects balanced them against reasons to take medication: positive experiences with doctors; perceived benefits of medication; or pragmatic considerations. These reasons overlap with those described previously as balancing patients' reservations about medicines. Conclusion. The term 'side effect' fails to distinguish between palpable effects that are welcome or unwelcome, or to recognise that some unwelcome effects may nevertheless be acceptable. If clinicians explore the range of palpable effects that patients attribute to antihypertensives and patients' possible preparedness to tolerate unwelcome effects, they will be better able to identify patients' preferences in this area. © 2006 Oxford University Press.

OBJECTIVE: Accurate individualized data on drug consumption is required for a number of purposes. While electronic medication event monitoring is the best objective measure available, self-report tools would be a useful alternative in certain situations. We searched for validated self-completion questionnaires suitable for measuring change in medication. METHODS: a systematic search of the English language literature since 1980, and a narrative literature review. RESULTS: Few articles described the development or use of self-report methods to measure change in medication over time. We found no questionnaire that was commonly used for this purpose, nor one that had been evaluated and published. Considerable work has been undertaken to develop questionnaires or diaries for individual projects, but because these tools and their validation are rarely published, they are not available for other researchers to use, and comparison across studies is difficult. Some work has been done developing diary formats and the Medication Quantification Scale converts complex medication change data to a single numerical score. CONCLUSION: Medication change is rarely considered as an outcome, and when it is measured, nonstandardized methods are used. More attention needs to be given to developing self-report tools and validating them across a range of criteria.

BACKGROUND AND OBJECTIVES: Appropriateness of prescribing is often assessed by standard instruments. We wished to establish whether judgements of appropriateness that included patients' perspectives and contextual factors could lead to different conclusions when compared with commonly used instruments. To explore the predictive accuracy of these instruments. METHODS: the design was interviews of patients, audio recordings of the consultation and interviews of the doctors, in varied primary care practices in England. Participants were patients who were likely to discuss a medication issue. The outcome measures were judgements of appropriateness made by the researchers and by two instruments: the Prescribing Appropriateness Index and the Medication Appropriateness Index. Implications for the predictive accuracy of the measures was also investigated. RESULTS: from 35 cases there was agreement between the judges and the instruments in 22 cases, 16 were appropriate and 6 inappropriate. of 10 cases classified as inappropriate by the instruments the judges thought four were appropriate. of 18 cases classified as appropriate by the instruments, two were considered inappropriate by the judges. In seven cases the prescribing decisions could not be classified by the instruments because the decision was to not prescribe. CONCLUSIONS: Current measures of appropriateness of prescribing depend predominantly on pharmacological criteria, and so do not represent cases that would be judged appropriate when including the patient's views and contextual factors. If most prescribing is appropriate then use of these measures may lead to more false negatives than real negatives. The instruments should be renamed as measures of 'pharmacological appropriateness' and are useful where the incidence of this type of inappropriate prescribing is relatively high.

OBJECTIVES: We draw on a systematic review of research on two-way communication between patients and health practitioners about medicines in order to determine the extent to which concordance is, or is not, being put into practice. DATA SOURCES: Six electronic databases were searched using the following categories of search terms: health care professionals, patients/consumers, medicine-taking/prescribing and communication. Articles were also identified from handsearches of journals, article reference lists and the Concordance website. REVIEW METHODS: Studies published between 1991 and 2000 were included. Studies were not excluded on the basis of design, methods or language employed. Abstracts of identified articles were assessed by at least two reviewers and the full articles were assessed by one reviewer and checked by at least one other reviewer. Data on the design, analysis and relevant findings were extracted. RESULTS: a total of 11 801 abstracts were reviewed and 470 full articles were retrieved. of the 134 articles subsequently included, 116 were descriptive studies. All but 10 of the papers were written in English. There were mixed findings about the extent to which patients feel that their beliefs, experience and preferences about medicines can be shared. Doctors tend to dominate discussions in consultations, although patient participation is associated with positive outcomes. Health care professionals' behaviour can impede as well as enhance patient involvement. CONCLUSIONS: There is little research that examines fundamental issues for concordance such as whether an exchange of views takes place. It is possible that interventions are needed to facilitate the development of concordance in practice.

OBJECTIVE: People who seek non-pharmaceutical interventions are often motivated by a desire to avoid or reduce orthodox medication. Effectiveness research in these areas needs to measure change in medication as an outcome. We set out to develop a data collection tool that is sensitive to changes in individual drug use over time. METHOD: a multi-disciplinary team designed, piloted, and revised the Medication Change Questionnaire (MCQ) on two occasions, and used qualitative interviews to understand the patient's perspective and ensure that the final product accurately reflected the medication that patients were taking. Thirty patients in one general practice completed the questionnaire on two occasions and a purposive sample of 14 were interviewed. The design sought to enable patients to record all their ingested medication accurately, both prescription and over-the-counter drugs, over a period of 7 days. It was designed to be administered face-to face on the first occasion, and to be self-completed on subsequent occasions. RESULTS: in considering in detail what medication was taken each day, the interview data fully correlated with the MCQ data in only one of the five people who were interviewed after completing the first draft of the questionnaire, but in eight of the nine people who completed the second draft. of these eight people all but one had made some change to their medication, either by stopping or starting a drug, varying the dose of a drug or always taking one or more drugs in varying doses. The interviews demonstrated the complex and individual ways that people took their medicines, and the disparity between what was prescribed and what was actually taken. The qualitative data were also useful for reflecting on the potential advantages and disadvantages of other data collection methods, such as single medication questions and pill counts. CONCLUSION: By involving patients at every level of research, we have developed a questionnaire that enables people to record their medication use accurately over a 7-day period, and to demonstrate changes in medication over time. Further work is required to assess its acceptability by different patient populations and its feasibility in terms of completion rates over longer periods of repeated use. We believe the MCQ to be an improvement over the variety of ad-hoc tools used in the past and it is freely available from the authors.

BACKGROUND: Menstrual disorders are a common presentation in primary care. Wide variations in management as well as discordance between patient and practitioners in relation to presenting problems have been described. AIMS: to explore the model of menstrual disorders used by practitioners in practice. DESIGN OF STUDY: Semi-structured interviews with primary care practitioners. SETTING: One inner London health authority area. METHOD: Constant comparative analysis. RESULTS: Medical practitioners were critical of the guidance provided by gynaecological definitions and texts. Practitioners put more emphasis on defining normality than on defining disorder. Practitioners used a wide range of criteria to judge their patients' complaints and decide on a course of action. Female practitioners had access to personal and professional experience and used this to develop an understanding of women's complaints. Male practitioners in particular were limited by problems in discussing menstruation in detail. Because of the difficulties in assessing patient history, other non-gynaecological factors such as patient age and consulting behaviour informed practitioners' judgements. CONCLUSION: This study draws attention to practitioners' problems in using current definitions of menstrual disorders. The combination of unhelpful medical definitions, lack of standards of normality and difficulties in discussing menstruation resulted in individual practitioners making judgements in idiosyncratic ways. In the absence of a useful gynaecological model, practitioners develop individual, often subjective and gendered models to use in practice.

Formulation (Garfinkel and Sacks 1970) is reported to be a very common phenomenon in institutional talk (Drew 2003). It is also known to be organized differently and to accomplish different interactional tasks depending on the type of talk in which it occurs. In this article, we describe the organization and the function of formulation in doctor-patient interaction, focusing specifically on general practice considtations. The data we draw on come from a corpus of GP consultations collected in the Midlands and Southeast of England. Observation of the data revealed that two types of formulation, namely formulating summary and action formulation, are routinely accomplished in doctor-patient interaction. It further revealed that the two types contrast in many respects. For example, while formulating summaries can appear anywhere in the consultation, action formulations appear towards the end of the consultation; while formulating summaries are topic closing implicative, action formulation are used to negotiate orderly exit from the conversation as a whole. Similarly while, in doing formulating summaries, participants orientate towards mutual understanding, in doing action formulation, they orientate towards acceptance of the agreed upon future action. In concluding the discussion, we go beyond description and reflect on implications of such a detailed understanding of the organization of formulation for current models of doctor-patient inter-action, which emphasize mutuality rather than paternalism. © Walter de Gruyter.

Primary care consultations about the menopause and hormone replacement therapy (HRT) involve decision making in the face of clinical uncertainty. This qualitative study used focus groups and semi-structured interviews with primary care patients to explore patients' perspectives of optimal risk communication and decision making, and their views on how to improve its effectiveness. The study was set in two general practices in Cambridge, and the participants were 40 women aged between 50 and 55 years, known to be Current-Users (CU), Ex-Users (EU), or Never-Users (NU) of HRT. The majority of participants favoured communication of risks and benefits to facilitate an informed and personalised choice resulting in informed shared decision making, while some wanted a more directive approach. Women felt that risk communication would be optimised by the provision of unbiased, truthful and summarised information, and also by the personalisation of both this risk information and subsequent management of the menopause and treatment with HRT. Barriers to optimal risk communication and decision making included lack of time, GP attitudes and poor communication in the primary care consultation. In summary, consultations concerning the menopause and HRT involve complex decision making in the face of uncertainty, and most patients favour evidence-based, individualised risk information and shared decision making leading to informed choices. Some patients wish for a more directive approach, and practitioners need to develop skills to evaluate each patient's needs at each consultation.

What is the best way to achieve concordance? the authors summarise the evidence and indicate the way ahead for doctors to involve patients in making decisions about treatment.

Prescribing medicines is a cornerstone of medical practice. There is, however, ample evidence that the prescribing process is far from ideal when viewed from the perspective of patients who wish to understand why they should take medicine, what potential harm they might face, and how they might integrate medicine taking into the pattern of their life, beliefs, and attitudes. Misalignment between clinicians and patients about medicine taking leads to a multitude of problems. Recently, a concept known as concordance has been suggested, where the prescribing interaction is seen as a process where both the patient and professional views and beliefs about medication, and the associated harms and benefits, are shared and negotiated. This interaction depends on a communication process that is becoming known as shared decision making between clinicians and patients. Although there is as yet little evidence that this approach leads to improved clinical outcomes, ethical principles and the core values of medical practice suggest that involving patients in the prescribing process will lead to better, safer care.

BACKGROUND: Proponents of recent models of the doctor-patient relationship, such as concordance and shared decision making, have emphasized mutuality rather than paternalism or consumerism. However, little attention has been paid so far to the ways in which this might actually be achieved. OBJECTIVES: the aims of this study were to establish whether there are any rules governing the opening sequence in general practice consultations, and to analyse the ways in which the observing or breaking of such rules contributes to the development of mutuality between patients and GPs. METHODS: the paper is based on a qualitative study of 62 patients consulting 20 GPs in 20 practices in the Midlands and Southeast of England. Consultations were audio recorded and transcribed; patients were interviewed before and after each consultation, and doctors were interviewed afterwards. Data were analysed using the sociological method of Conversation Analysis. The outcomes were participants' own understandings as demonstrated in their speech. RESULTS: a selection rule was identified whereby doctors choose between the questions "How are you?" and "What can I do for you?" to elicit patients' concerns. Deviations from this selection rule may be either repairable or strategic. Repairable deviance is based on misunderstanding between participants, and is resolved interactionally, usually by patients. Strategic deviance is the attempt by doctors to emphasize or de-emphasize certain aspects of their relationships with particular patients. Deviations from the rule which are not repaired lead to misalignment between participants. CONCLUSION: in relation to concordance, or shared decision making more generally, this analysis demonstrates that alignment or misalignment between participants will occur before any discussion about treatment options occurs. In cases of misalignment, concordance will be much harder to achieve. Mutuality is an achievement of both patients and doctors, and requires the active participation of patients.

OBJECTIVES: Many people with chronic disease seek acupuncture treatment, despite it being largely excluded from Western state-funded health care systems. What benefits and problems do such people perceive and experience as important? to what extent do three subjective health questionnaires encompass and measure these treatment effects? DESIGN AND OUTCOME MEASURES: a longitudinal qualitative study, using a constant comparative method, informed by grounded theory. Each person was interviewed three times over 6 months and before each interview participants completed three health status questionnaires, EuroQol, COOP-WONCA charts, and MYMOP2. Semistructured interviews used open-ended questions to explore peoples' experiences of illness and treatment, and then used the cognitive interview technique to discuss their questionnaire responses. SUBJECTS AND SETTINGS: Eight professional acupuncturists in seven different settings publicized the study to their patients. We interviewed a maximum variation sample of 23 people with chronic illness, who were having acupuncture for the first time. RESULTS: in addition to changes in their presenting symptoms people experienced whole-person effects that were characterized by changes in strength and energy, and changes in personal and social identity. These effects were distinct but not divisible because of their interdependence and their complex and individual development over time. The health status questionnaires varied in their ability to reflect and measure these changes, and the whole person effects were often missed. After 6 months some people had changed their treatment goals and some individuals were still seeing health improvement. One person found that acupuncture exacerbated her symptoms. CONCLUSIONS: Knowledge of the range, individuality, and varied temporal patterns of treatment outcomes can guide potential patients, clinicians, health care providers, and researchers. Qualitative methods have highlighted the strengths and weaknesses of different outcome questionnaires, and the importance of long-term follow-up. We plan to do further work on appropriate outcome questionnaire selection and development.

OBJECTIVE: to explore the feasibility of using a broader definition of the appropriateness of prescribing in general practice by developing ways of measuring this broader definition and by identifying possible relationships between different aspects of appropriateness and patient outcomes. DESIGN: a questionnaire study of patients and general practitioners before and after study consultations, supplemented by data collected from patients' medical records and telephone interviews with patients 1 week later. SETTING: General practices in the south of England. PARTICIPANTS: 24 general practitioners and 186 of their consulting patients. MAIN OUTCOME MEASURES: Unwanted, unnecessary, and pharmacologically inappropriate prescriptions; patients' adherence. RESULTS: Before the consultation 42% of patients said they wanted or expected a prescription for their main problem. Prescriptions were written in two thirds (65%) of study consultations, and 7% of these had not been wanted or expected beforehand. Doctors recorded that one in five prescriptions they wrote were not strictly indicated. of the 92 independent assessments of these prescriptions, four were judged to be inappropriate and in 19 cases the assessors were uncertain. 41% of prescriptions written were wanted, necessary, and appropriate. Subsequently, 18% of patients for whom a prescription had been written were potentially non-adherent and 25% had worries or concerns about their medication. CONCLUSION: the attempt to measure appropriateness of prescribing along the three dimensions of patients', prescribers', and pharmacological perspectives is both feasible and likely to yield valuable insights into the nature of general practice prescribing and patients' use of medicines.

Previous qualitative work has identified communication problems between doctors and patients in general practice consultations, particularly in relation to prescribing. This study aimed to develop quantitative measures to extend the research and provide instruments for both researchers and practitioners to use in monitoring communication and prescribing. Questionnaires were developed from existing instruments. When used with patients and doctors in a variety of general practices, the instruments appeared to be acceptable and had high response rates. While many consultations were satisfactory in terms of patients' expectations and their experiences with medicines, only 38% did not have any poor outcome. The results using quantitative instruments were similar to but less striking compared to our previous qualitative work. The research was developmental and findings suggest that unnecessary prescribing and problems in communication are more likely to lead to poor outcomes in terms of non-adherence and patients having barriers to using their medication.

Recent policy changes in the UK such as deregulation of prescribed medicines and the introduction of telephone helpline services are intended to promote self-treatment. Drawing on interviews with, and consultations between, 35 patients and 20 general practitioners, we use Kleinman's (Patients and Healers in the context of culture: an exploration of the Borderland between Anthropology, Medicine and Psychiatry, University of California Press Ltd. London) model of the three sectors of health care in order to examine the range of self-treatments people use and the discussion of these treatments in medical consultations. We argue that despite the availability of a range of treatment options and policy changes advocating greater use of self-treatment, patients are inhibited from disclosing prior self-treatment, and disclosure is affected by patients' perceptions of the legitimacy of self-treatment. The findings are in keeping with Cant and Sharma's (A New Medical Pluralism, Alternative Medicines, Doctors, Patients and the State, UCL Press, London) contention that although there has been a pluralisation of "legitimate" providers of health care and a restructuring of expertise, biomedicine itself remains dominant.

OBJECTIVES: for people with dyspepsia who are receiving orthodox general practice care, what is the effect on outcome and on NHS costs of adding treatment by a choice of acupuncture or homeopathy? This paper describes and reflects upon a pilot study with user involvement. DESIGN: a randomised pilot study. Patients chose between acupuncture and homeopathy and were then randomised to this preference or to the control group of normal GP care. SETTING AND PARTICIPANTS: Sixty people with dyspepsia (>/=2 weeks) presenting in one UK general practice were recruited in consultations and by letter to those on repeat prescriptions. There were few exclusion criteria. The homeopath and the acupuncturist treated the patient individually according to their normal practice for up to 6 months. After the trial there was a focus group for participants. OUTCOME MEASURES: SF-36 health survey, Measure Yourself Medical Outcome Profile (MYMOP), and General Well-being Index (GWBI). Counts of prescriptions, consultations and referrals from practice computer records. RESULTS: No trend or significant difference between the groups for clinical outcome or NHS costs. Major costs for the 6 months, mean (S.D.) cost per patient, were general practitioner consultations pound 8 (18), prescriptions pound 64 (73), acupuncture pound 175 (52), homeopathy pound 105 (33). Participants gave insights and suggestions which will inform the full trial design. CONCLUSIONS: Reflection on the pilot study data and experience by participants, treating practitioners and researchers led to modifications in the design and a sample size calculation. How to demonstrate individual responses to treatment remains a problem.

BACKGROUND: Shared decision-making between patients and health professionals has been promoted as ethically and clinically desirable. Patients vary in their willingness to participate in decision-making, while clinicians identify practical barriers to greater participation, such as time and communication skills. A paternalistic approach to treatment decisions remains common even in an area of clinical uncertainty. The willingness of patients to participate in decision-making varies over time during the course of an illness but patients may not be given the opportunity to revisit clinical decisions with their specialists after the initial consultation. OBJECTIVES: to gain an in depth understanding of the perspectives of men recently diagnosed with localized prostate cancer, and to explore the value of decision-making models in the setting of NHS practice. METHODS: the study design was a qualitative analysis of semi-structured interviews. Nineteen men recently diagnosed with localized prostate cancer were included from patients attending a British District General Hospital. RESULTS: the interviews suggested that the respondents' treatment plans were mostly decided on their behalf by their clinicians. Whilst initially accepting this paternalistic approach, the interviewees over time wished to revisit the decisions. Patients' barriers to shared decision-making included fear of appearing disrespectful to their doctors and of taking responsibility for the outcome of treatment. The structure of patient follow-up did not afford the men an opportunity to discussion treatment decisions further. CONCLUSIONS: the paternalistic decision-making model remains the chosen approach in this situation. The patients' willingness to become actively involved in choosing their care varies over time. Barriers to shared decision-making can be identified both in the nature of the doctor-patient relationship and the structure of the clinical follow-up.

Children are increasingly acknowledged to have rights in the determination of decisions that affect them. This has encouraged research to be undertaken with children themselves to understand their own views, experiences and relationships, and has demonstrated a considerable gulf from parental concerns and observations. Methods for research with children are, however, relatively under-developed. This article reflects on our experience of conducting focus groups with children aged 7-11 years to examine their experiences of living with asthma. It discusses the use of child-friendly techniques to promote participation and access children’s meanings, and raises issues about the size and composition of groups and recruitment strategies, group dynamics, tensions and sensitive moments. We conclude that focus groups are a valuable method for eliciting children’s views and experiences and complement personal interviews, while important questions relate to enhancing children’s participation in other stages of the research process. © 2002, Sage Publications. All rights reserved.

OBJECTIVE: to examine factors associated with uptake of HIV clinic services by black African HIV positive people living in London. DESIGN: Questionnaire survey of patients attending study clinic. SETTING: HIV outpatient clinic in south London, UK. SUBJECTS: all HIV positive patients attending the clinic between July 1999 and March 2000. MAIN OUTCOME MEASURES: Use of health services, delay in seeking HIV test, pre-HIV test concerns, delay in uptake of HIV care, barriers to clinic use, disclosure, sources of support. RESULTS: 392 questionnaires were completed. Respondents were 64% white, 26% black African, and 10% from other ethnic groups. Twenty eight per cent of black Africans suspected they were HIV positive before diagnosis (white patients 45% (p

BACKGROUND: Recent research has shown that patients' expectations for prescriptions influence doctors' prescribing decisions, but little is known of the antecedents of these expectations. OBJECTIVES: to test earlier qualitative research about patients' views of medicines; to describe the demographic characteristics of those holding orthodox and unorthodox views of medicines; to investigate the relationship between patients' ideal and predicted expectations for prescriptions; and to determine the relative effects of attitudinal, demographic, organizational and illness variables on these expectations. DESIGN: Questionnaire survey of patients consulting general practitioners. SETTING AND PARTICIPANTS: a total of 544 patients and 15 doctors in four general practices. MAIN VARIABLES STUDIED: Patients' attitudes to medicines; patients' demographic characteristics; organizational variables; aspects of patients' presenting problems. OUTCOME MEASURES: Patients' ideal and predicted expectations for prescriptions. RESULTS: Orthodox and unorthodox attitudes to medicines can be measured quantitatively, and ethnicity was the only demographic variable associated with both. Ideal and predicted expectations for prescriptions were closely related to each other but differed in their antecedents. Both types of expectations were associated with attitudinal, demographic, organizational and illness variables. Ideal expectations were influenced by orthodox and unorthodox attitudes to medicines, while predicted expectations were only influenced by orthodox attitudes. CONCLUSIONS: Future studies of patients' expectations for health services should distinguish between ideal and predicted expectations, and should consider the range of possible influences on these expectations. In particular, the effect of the organization and context of health services should be investigated.

OBJECTIVE: to explore women's understanding of the risks associated with the menopause and hormone replacement therapy (HRT). METHODS: Two general practices in Cambridge participated in this qualitative study using focus groups and semi-structured interviews. Forty women aged between 50 and 55 years, known to be current users, ex-users, or never-users of HRT were included in the study. RESULTS: Participants viewed risk as a danger: coping with risk required an assessment to facilitate an informed decision. To understand risk and make a personal interpretation, patients used their own knowledge, the presentation and context of that risk, together with their individual belief system particularly relating to representations of womanhood, lay beliefs and fatalism, control and choice. Experience, age and emotions often modified the salience of risk, and participants then used this meaning to weigh up the risks and benefits of a particular threat. CONCLUSION: Participants gained understanding of risk by an active risk assessment process involving individual and complex interplay between knowledge and core beliefs, allowing the assessment of risks and benefits to facilitate an informed decision about the menopause and HRT.

The terms non-compliance or non-adherence, in relation to medicine taking, contain the assumption that preservers' actions are legitimate and should be perceived as such by patients, and that non-adherence is deviant. Yet the high level of non-adherence suggests that patients do not necessarily perceive prescriptions in this way. We consider the relevance today of viewing non-adherence in terms of Weber's concept of legitimacy. We also consider the more recent concept of concordance. Drawing on an analysis of interviews and consultations from a study of doctor-patient communication about drugs, we argue that decisions about prescribing and medicine taking are complex and take account of social as well as medical criteria. Moreover, any attempt to understand adherence needs to be flexible enough to encompass both a Weberian as well as a concordance approach to prescribing and medicine taking.

The objective of this study was to investigate the extent of non-adherence to prescribed antibiotics and the relationship of non-adherence to consultation and attitudinal factors. Self-completion postal questionnaires were sent to 202 consecutive adult attenders to an accident and emergency (A&E) department who had been given antibiotics to take home, within a week of the A&E attendance. The questionnaire included a detailed log of dosing, two sections of eight questions each on the patients' perceptions of the consultation and of their attitudes to medicines in general, which were marked on Likert scales; and questions inviting free text answers. Efforts were made to maximize the response rate, and to contact a random sample of 10 non-responders to assess any non-response bias. The response rate was 56%. The non-responders sampled reported similar non-adherence to that of the responders. of the 113 responders, 10 (9%) indicated that they had taken none of their prescribed medicines, and 25 (22%) that they had taken less than 80%. The most common pattern of non-adherence was early cessation. Two aspects of the consultation (expectations about a prescription, and that there were too many tablets) were related to adherence. In conclusion, this study suggests that the effectiveness of some A&E consultations is reduced by inadequate exploration of patients' concerns and expectations.

BACKGROUND: Patients often find it difficult to discuss their medications fully with their prescribing doctor. Little is known about what might be said about medications to another professional within the primary health care team (PHCT). Pharmacists are seeking to extend their role within primary care and are ideally placed to provide independent medication advice. OBJECTIVE: Our aim was to test the feasibility of using primary care pharmacists as medication counsellors, and to analyse the content of their consultations using qualitative methods. METHOD: Some patients were referred by their doctors, some self-referred and others were invited by the pharmacists for medication reviews. Pharmacist-patient consultations took place within GP surgeries and in patients' homes, and were audiotaped, transcribed and analysed qualitatively. The study sample consisted of 25 consultations with three primary care pharmacists conducted over a 3-month period. RESULTS: Referrals from the doctors were slow and there were no referrals from nurses. The pharmacists, who all had clinical backgrounds and were not dispensing pharmacists, experienced few problems with the consultations. Patients were willing to discuss their medications in detail with the pharmacists. A theme emerged regarding the perceived potency of medications, and this seemed to have an effect on the experience of side effects and the perceived efficacy of the medications. CONCLUSIONS: from this small study, it would seem that pharmacist consultations within primary care are a feasible extension of their current role as prescribing budget advisors. The richness of the consultations reflects the acceptability to patients. Feedback of information to other members of the PHCT, given patient consent, would be very useful for a better understanding of the patient's perspective, which in turn would facilitate concordance in the negotiation of the patient's management.

The traditional paternalistic model of medical decision-making, in which doctors make decisions on behalf of their patients, has increasingly come to be seen as outdated. Moreover, the role of the patient in the consultation has been emphasised, notably through the adoption of 'patient-centred' strategies. Models that promote patients' active involvement in the decision-making process about treatment have been developed. We examine one particular model of shared decision making [Charles, C. Gafni, A. Whelan, T, 1997. Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Social Science & Medicine 44, 681-692.]. The model has four main characteristics. These are that (1) both the patient and the doctor are involved, (2) both parties share information, (3) both parties take steps to build a consensus about the preferred treatment and (4) an agreement is reached on the treatment to implement. Focusing on the first two of the four characteristics of the model, we use the findings from a study of 62 consultations, together with interviews conducted with patients and general practitioners, to consider participation in the consultation in terms of sharing information about, and views of, medicines. We found little evidence that doctors and patients both participate in the consultation in this way. As a consequence there was no basis upon which to build a consensus about the preferred treatment and reach an agreement on which treatment to implement. Thus even the first two of the four conditions said to be necessary for shared decision making were not generally present in the consultations we studied. These findings were presented in feedback sessions with participating GPs, who identified a number of barriers to shared decision making, as well as expressing an interest in developing strategies to overcome these barriers.

OBJECTIVES: to ascertain the ability of a patient-generated outcome measure, the 'Measure Yourself Medical Outcome Profile' (MYMOP), to reflect the outcomes of consultations which patients consider are most important, as derived from qualitative interviews. METHODS: a qualitative study using a constant comparative method to analyse semistructured interviews which were then compared with the results of MYMOP questionnaires. A variable-orientated analysis was used to develop themes and a case-orientated analysis was used to develop narrative summaries called vignettes from the interviews. The MYMOP questionnaire was completed by the interviewees (n = 20), a minimum to twice and a maximum of nine times over a four-month period. The scores were displayed on individual MYMOP charts. For each individual, the outcome as measured by MYMOP was compared with the outcome data from the qualitative interviews. The interviewees were attending a variety of complementary practitioners in primary care. RESULTS: the treatment effects which people described were encompassed by five themes: reduction in symptoms; reduction in disability; reduction in, or avoidance of, medication; gaining control and improving coping skills; and securing support and hope through the patient-practitioner relationship. The vignettes demonstrated how individuals identified and valued these various effects and weighed them up in evaluating the overall benefit of the treatment. Their MYMOP charts were able to measure some effects better than others. CONCLUSIONS: the treatment effects, as quantified using MYMOP, accorded with those described by most patients at interview, but some important limitations were identified with MYMOP, particularly an underplaying of the importance of medication avoidance or medication reduction in this patient group. This dimension is lacking in most outcome questionnaires and has been included in a new version of MYMOP. This study also showed that qualitative interview data can help in evaluating the ability of outcome questionnaires to measure the treatment effects that particular patient groups consider most important.

Menorrhagia is a common presentation in primary care. The gynaecological literature defines menorrhagia, as the loss of 80 ml or more of blood per period and guidelines for treatment are based on this definition. There is extensive evidence that the majority of women who complain of heavy bleeding do not fit the medical definition. We interviewed women presenting with menorrhagia to explore their perceptions and their initial interaction with the medical profession. A distinct illness model emerged. Women had a precise understanding of their complaint, so that a change in her cycle was indicative of a problem to many women, without reference to outside criteria. Women attached particular importance to how they felt and to their ability to function and they rejected the medical emphasis on blood loss evaluation. Many women were dissatisfied with the consultation and experienced doctors as being dismissive of their problem. They were seeking an explanation for why their periods had changed and had concerns that related to their understanding of menstrual bleeding. Interviewees were unsure whether period problems could be described as illness, and what range of disturbance was normal. It is suggested that the disease model of menorrhagia is not relevant to the majority of women with this complaint. It is proposed that the disease model be replaced with illness models.

OBJECTIVES: to identify and describe misunderstandings between patients and doctors associated with prescribing decisions in general practice. DESIGN: Qualitative study. SETTING: 20 general practices in the West Midlands and south east England. PARTICIPANTS: 20 general practitioners and 35 consulting patients. MAIN OUTCOME MEASURES: Misunderstandings between patients and doctors that have potential or actual adverse consequences for taking medicine. RESULTS: 14 categories of misunderstanding were identified relating to patient information unknown to the doctor, doctor information unknown to the patient, conflicting information, disagreement about attribution of side effects, failure of communication about doctor's decision, and relationship factors. All the misunderstandings were associated with lack of patients' participation in the consultation in terms of the voicing of expectations and preferences or the voicing of responses to doctors' decisions and actions. They were all associated with potential or actual adverse outcomes such as non-adherence to treatment. Many were based on inaccurate guesses and assumptions. In particular doctors seemed unaware of the relevance of patients' ideas about medicines for successful prescribing. CONCLUSIONS: Patients' participation in the consultation and the adverse consequences of lack of participation are important. The authors are developing an educational intervention that builds on these findings.

BACKGROUND: the 1993 chronic disease management contract encourages United Kingdom general practices to implement a standardised package of care with an emphasis on regular visits to an asthma clinic. AIM: to explore the views of people with asthma about the organisation of asthma care in general practice. METHOD: Semi-structured interviews with 20 patients registered with one practice with a nurse-run asthma clinic. The sample was selected to provide people with a wide range of ages and disease severity, and included parents of children. RESULTS: the age range of the interviewees was five to 87 years (parents of children were interviewed) and half of the interviewees had attended the asthma clinic at some time. In describing how they managed their asthma, people identified their medical care alongside other important factors, such as avoiding smoking and pollution, and a decision to seek medical help was made in the context of all of life's other priorities. People expressed diverse views about the organisation of care, describing how their needs changed over time and how they balanced up several factors in deciding what was best for them. These factors were encompassed by four themes: the accessibility of care, severity of asthma and dealing with uncertainty, self-knowledge and self-management, and expert knowledge and therapeutic relationships. Interviewees were evenly split between wishing to be seen regularly in the clinic and wishing only to attend when needing help. CONCLUSION: Patients required asthma services that allow individual choice and flexibility, and eight service objectives were identified that would cover most people's needs.

OBJECTIVE: to investigate patients' agendas before consultation and to assess which aspects of agendas are voiced in the consultation and the effects of unvoiced agendas on outcomes. DESIGN: Qualitative study. SETTING: 20 general practices in south east England and the West Midlands. PARTICIPANTS: 35 patients consulting 20 general practitioners in appointment and emergency surgeries. RESULTS: Patients' agendas are complex and multifarious. Only four of 35 patients voiced all their agendas in consultation. Agenda items most commonly voiced were symptoms and requests for diagnoses and prescriptions. The most common unvoiced agenda items were: worries about possible diagnosis and what the future holds; patients' ideas about what is wrong; side effects; not wanting a prescription; and information relating to social context. Agenda items that were not raised in the consultation often led to specific problem outcomes (for example, major misunderstandings), unwanted prescriptions, non-use of prescriptions, and non-adherence to treatment. In all of the 14 consultations with problem outcomes at least one of the problems was related to an unvoiced agenda item. CONCLUSION: Patients have many needs and when these are not voiced they can not be addressed. Some of the poor outcomes in the case studies were related to unvoiced agenda items. This suggests that when patients and their needs are more fully articulated in the consultation better health care may be effected. Steps should be taken in both daily clinical practice and research to encourage the voicing of patients' agendas.

AIM: Higher degrees have been proposed as one means whereby general practitioners can continue their professional development and avoid a slow decline into professional isolation and burnout. The United Medical and Dental School of Guy's and St Thomas' Hospitals' MSc in general practice has been available to experienced general practitioners for over a decade. This study reports some of the outcomes of participation for the 76 graduates of the first nine cohorts. METHOD: As part of an ongoing programme of evaluation the graduates were sent a questionnaire which, in addition to seeking information about attainment of intended outcomes, gave respondents the opportunity to write freely about the contribution made by the course to their own professional and personal development. Seventy-one graduates completed the questionnaire, a response rate of 93%. RESULTS AND CONCLUSIONS: an increased confidence that arises not only from a broadened knowledge base and increased skills but also from a sense of having been enabled to explore more deeply into their discipline, is the most frequently and highly valued outcome of participation. Graduates appreciated having additional protected time and demonstrated an ability to use it productively. A further significant outcome was the ability of the course to confront those habitual assumptions of doctors which inform their practice in a manner that was both challenging and supportive. Tendencies to professional isolation and burnout appear to have been reversed with a greater sense of connectedness to their discipline. Doctors seeking to diversify their general practice careers beyond the task of providing medical services have found the MSc an important route for change.

Reflexivity is often described as an individual activity. The authors propose that reflexivity employed as a team activity, through the sharing of reflexive writing (accounts of personal agendas, hidden assumptions, and theoretical definitions) and group discussions about arising issues, can improve the productivity and functioning of qualitative teams and the rigor and quality of the research. The authors review the literature on teamwork, highlighting benefits and pitfalls, and define and discuss the role for reflexivity. They describe their own team and detail how they work together on a project investigating doctor-patient communication about prescribing. The authors present two reflexive tools they have used and show through examples how they have influenced the effectiveness of their team in terms of process, quality, and outcome.

BACKGROUND: Although there is some published work acknowledging that the general practice receptionist's role is both important and difficult, receptionists' own views have rarely been sought. AIM: to explore general practice receptionists' ideas and feelings about their work. METHOD: a questionnaire was distributed to all 150 receptionists in a representative sample of 26 practices in the area covered by Leeds family health services authority. Semi-structured interviews were conducted with a representative group of 20 receptionists selected from the questionnaire sample. RESULTS: all responders were women, 60% were over 40 years old, and about half had been in the post for more than five years; four-fifths worked part-time. They had chosen the job because it dovetailed with the rest of their lives. Responders derived satisfaction from helping patients, meeting people, having good relationships with colleagues, and doing varied work. Sources of stress included difficult patients, work pressure, problems finding appointments for patients, and feeling caught between doctors' and patients' demands. Responders' experiences and views of training were diverse. Practice managers were important in making them feel consulted and supported. All had a sense of teamwork with colleagues, but many did not perceive the whole practice as a team. Many felt doctors failed to appreciate the pressure and complexity of their work. CONCLUSIONS: Receptionists' work is complex, demanding and intense, involving a high level of commitment to patients, colleagues, and the practice. Recommendations include improved appointment systems, a positive role for practice managers in relation to reception staff, and individual planning of receptionists' training. Effective teamwork among receptionists should be recognized and developed. General practitioners (GPs) are recommended to develop a greater understanding of receptionists' work.

BACKGROUND: the United Medical and Dental School's (UMDS's) MSc in general practice is one of the longest running courses of its kind. Although descriptive accounts of such courses have been published, little is known about their outcomes. AIM: to measure the extent to which graduates feel they have personally achieved 16 intended outcomes derived from the course objectives, and to record current academic activities, particularly teaching and research. METHOD: a postal questionnaire to graduates of the UMDS MSc in General Practice. RESULTS: the response rate was 93%. of the 71 responders, 23 have gone on to register for or complete other degrees or diplomas. Over two-thirds of responders had an academic commitment following the MSc. Two-thirds were currently engaged in research and over half reported having had work accepted for publication. The majority of graduates confirmed the attainment of all 16 outcomes, although outcomes related to personal achievements were endorsed more strongly than those related to service delivery. CONCLUSION: UMDS graduates are making a significant contribution to their discipline and are unanimous in describing the course as an important event in their personal development. As a result of this study, the course organizers are seeking to increase the links between academic study and everyday practice.

BACKGROUND: a small number of studies have used different methodologies to measure primary non-compliance, but they have not established the reasons for patients not cashing their prescriptions. It has been suggested that the number of uncashed prescriptions is a measure of the quality of doctor-patient communication, but this hypothesis remains untested. AIM: to establish the feasibility of obtaining data on a sensitive subject from patients by interview and to seek patients' reasons for not cashing prescriptions using qualitative data. METHOD: Questionnaire administered to 1000 consecutive patients attending surgery, followed by interview with those patients who indicated that they had not cashed the index prescription. RESULTS: the response rate was 93.5%. Twenty-two patients were included in the study. There was wide variation in the number of uncashed prescriptions issued by each doctor (1-13). A total of nine out of 22 patients reported that their medication was cheaper over the counter and obtained it in this way; 13 out of 22 did not obtain their medication. Five patients indicated that cost was a factor in not obtaining their medication. Other factors included the doctor's permission not to cash the prescription, poor understanding of the illness, and the wish to maintain control. CONCLUSION: it is feasible to ask patients about aspects of their behaviour that may indicate, or cause, difficulties in the doctor-patient relationship. Prescribing behaviour varies widely between doctors and, although cost is a factor in determining whether a prescription will be cashed, other variables, such as the patient's desire to maintain control over the illness, may be more important.

Biomedical discourse dominates the research literature and media accounts of menopause. Middle aged women are increasingly faced with decisions about hormone replacement therapy (HRT) in the context of differing constructions of menopause and often inconclusive information. There is an apparent discrepancy between the beneficial claims made for HRT in the medical literature and the numbers of women who use it in the U.K. An educational approach has been advocated which assumes that with adequate information more women will take and adhere to HRT. Middle aged women's own views and opinions about medication, health and menopause have been relatively neglected. The extent to which women use medical discourse in discussions of menopause and the extent to which menopause has become "medicalized" remain unclear. This is a descriptive study using in-depth interviews and a qualitative methodology to investigate women's accounts of their decisions relating to HRT use. Ninety-three 50 year old women were recruited from the age/sex register of a North London general practice; 45 women agreed to take part. Three main themes were identified in the women's accounts of their decisions: (1) the presence or absence of troublesome vasomotor symptoms, (2) doctors' views and advice, and (3) views toward menopause and medication. There was a general preference not to take medication, particularly for menopause, which was seen as a natural process unless severe symptoms were present. Women appeared to be considering different criteria from health professionals when making decisions about HRT. Whether these accounts are voiced in a medical consultation will partly depend upon the doctor's beliefs and communication skills as well as the assertiveness of the woman herself.

BACKGROUND: in recent years there has been a trend towards increasing the number of drugs that are available over the counter (OTC) without prescription. Simultaneously, community pharmacists have been encouraged to develop and extend their role. General practitioners (GPs) have been shown to have some reservations about these developments. A group of drugs widely used in general practice, the H2-antagonists, have recently become available OTC. AIM: to examine GPs' attitudes towards community pharmacists dispensing H2-antagonists over the counter (OTC) without prescription. METHOD: Postal questionnaire to a sample of GPs from inner and outer London, Surrey, Kent, Hampshire, Northumberland, Newcastle upon Tyne and Leicestershire. RESULTS: of 850 questionnaires sent, 515 were returned, an overall response rate of 60.5%. Fifty four per cent of respondents agreed that cimetidine should be available over the counter for dyspepsia in adults under 45 years not responsive to antacids. Ninety per cent of respondents were aware that H2-antagonists had been deregulated. Most general practitioners learned about the deregulation from professional journals. Very few GPs stated they had changed their prescribing practice since H2-antagonists became available OTC. The high cost to the patient of the OTC product was the most frequently mentioned reason why respondents did not encourage their patients to switch from prescription to OTC H2-antagonists. Worries and concerns regarding the OTC availability of H2-antagonists included masking serious conditions, missed diagnosis, loss of control by the GP and the potential for inappropriate use by patients. CONCLUSIONS: Since 1990, there has been a large increase in GPs support for the OTC availability of cimetidine. However, according to their stated behaviour, the reclassification of H2-antagonists does not seem to have changed GPs' prescribing practice, and few appear to be recommending that their patients buy them over the counter.

OBJECTIVE: to assess patients' views and expectations when they consult their general practitioner with acute lower respiratory symptoms and the influence these have on management. DESIGN: General practitioners studied consecutive, previously well adults and recorded clinical data, the certainty regarding their prescribing decision, and the influence of non-clinical factors on that decision. Patients completed a questionnaire at home after the consultation. SETTING: 76 doctors from suburban, inner city, and rural practices. SUBJECTS: 1014 eligible patients entered; 787 (78%) returned the questionnaire. MAIN OUTCOME MEASURES: the views of the patient, the views of and antibiotic prescription by the doctor. RESULTS: Most patients thought that their symptoms were caused by an infection (662) and that antibiotics would help (656) and had both wanted (564) and expected (561) such a prescription. 146 requested an antibiotic, 587 received one. of the 643 patients who thought they had an infection, 582 wanted an antibiotic and thought it would help. Severity of symptoms did not relate to wanting antibiotics. For those prescribed antibiotics, their doctor thought they were definitely indicated in only 116 cases and not indicated in 126. Patient pressure most commonly influenced the decision to prescribe even when the doctor thought antibiotics were not indicated. Doctors considered antibiotics definitely indicated in only 1% of the group in whom patient pressure influenced the prescribing decision. Patients who did not receive an antibiotic that they wanted were much more likely to express dissatisfaction. Dissatisfied patients reconsulted for the same symptoms twice as often as satisfied patients. CONCLUSION: Patients presenting with acute lower respiratory symptoms often believe that infection is the problem and antibiotics the answer. Patients' expectations have a significant influence on prescribing, even when their doctor judges that antibiotics are not indicated.

OBJECTIVES: to measure patients' expectations of receiving prescriptions and general practitioners' perceptions of these expectations and to determine the factors most closely associated with the decision to prescribe. DESIGN: Questionnaires were completed by patients waiting to see their general practitioners, and by their doctors immediately after the consultations. SETTING: Four non-fundholding groups practices in southeast London. SUBJECTS: 544 unselected patients consulting 15 general practitioners. MAIN OUTCOME MEASURES: Doctor's perceptions of patients' expectations; doctors' decisions to prescribe. RESULTS: 67% (354/526) of patients hoped for a prescription; doctors perceived that 56% (305/542) of patients wanted prescriptions; and doctors wrote prescriptions in 59% (321/543) of consultations. Despite the close agreement between patients' hopes and doctors' perceptions, 25% (89/353) of patients hoped for a prescription but did not receive one. In 22% (68/313) of consultations in which prescriptions were written, they were not strictly indicated on purely medical grounds, and in only 66% (202/306) of consultations in which prescriptions were written were they both indicated and hoped for. Doctors' perceptions of patients' expectations were the strongest predictor of the decision to prescribe, but the final regression model also included patients' hopes and ethnic group, and the doctor's feeling of being pressurised. CONCLUSIONS: in an area of low prescribing and high expectations the decision to prescribe was closely related to actual and perceived expectations, but the latter was the more significant influence.

OBJECTIVE: to discover cancer patients' views about disclosure of information to their family, their family's influence over the information given them, and their preferences for doctors' behaviour if they and their family disagree, as a complement to applied ethical theory. DESIGN: Semistructured interviews followed by qualitative content analysis. SETTING: Mainly urban British general practice. SUBJECTS: 30 patients in whom cancer, excluding basal and squamous cell skin carcinomas, was diagnosed 1-7 years earlier. RESULTS: all subjects wished doctors to respect their views rather than those of their family, should they differ. With their consent, subjects favoured close family receiving information about their illness, all but one mentioning advantage to their family. Without such consent, six unconditionally favoured disclosure of information to their family while seven unconditionally opposed disclosure. Seventeen participants restricted their approval for such disclosure to specific circumstances. Only two participants approved of their family influencing the information that they received about their illness; all but seven wished to receive full information, the exceptions relating to information about bad prognosis. CONCLUSIONS: Subjects favoured openness with their family but most rejected unconditional disclosure of information without their consent and their family influencing what information they would be given. They valued respect for their autonomy more highly than beneficence and considered that their own needs took priority over those of their family.

BACKGROUND: the development of modern information technology and the increasing amount of multidisciplinary teamwork in primary health care mean that the principle of patient confidentiality is becoming difficult to uphold. The debate about confidentiality so far has paid little attention to patients' views. AIM: a qualitative study was undertaken to explore patients' expectations and attitudes concerning confidentiality of patients' medical records in general practice. METHOD: Semi-structured interviews were carried out with 39 patients from one general practice. RESULTS: Patients' expectations diverged considerably from actual practice. The majority of interviewees felt that administrative and secretarial staff should not have access to medical records. Some patients had reservations about a doctor not directly involved in their care having access to their records. They were unaware of the fact that practice staff had ready access to their medical records. Interviewees had particular concerns about recording of nonmedical information in their records, and the confidentiality of computerized records. CONCLUSION: Assumptions of shared doctor-patient definitions of confidentiality, at least in this practice, would be misplaced. It is suggested that explicit negotiations about what is recorded in patients' records would go some way to addressing the discrepancies identified in this study.

Seven general practitioners used various methods to identify patients in their practices whom they had inherited and whose medication they regarded as inappropriate in the light of current knowledge. Information was collected in each case about the drug concerned, the patient, the original prescriber, and the reason for continued prescribing. Each patient was also interviewed. Altogether, 25 different drugs were prescribed for 40 patients: in 16 the inappropriate drug was one acting on the brain, in 13 an antihypertensive, in seven it was given for heart disease and in three, for asthma. The influence of the original prescriber, and the patient's dependence on the drug, helped to explain its continued use. Almost half the patients said that they might consider changing their medication. The study underlines the importance of reviewing long-term medication and offers a method of scrutinizing repeat prescribing in general practice. Community pharmacists could help in this process.

BACKGROUND: Research suggests that patients are more satisfied with patient-centred consultations than with doctor-centred consultations and that some health measures are positively influenced by this type of consultation. Research on the factors that influence the patient centredness of the consultation is sparse but suggests that women doctors are more patient centred than men doctors. AIM: a study was designed, first, to confirm or reject the suggestion that women general practitioners are more patient centred than men general practitioners and, secondly, to determine some of the factors that might influence the patient centredness of a general practitioner. METHOD: the audiotaped consultations of 41 general practitioners were analysed using an instrument designed to measure patient centredness. The general practitioners were selected from a group of volunteers to represent both sexes as well as a wide range of age and experience. RESULTS: the results of the analysis showed that women general practitioners, particularly trainers, had higher patient-centredness scores than men general practitioners. This behaviour is characterized by an increased frequency of open questions and greater attention to patient offers (anything of potential significance that a patient brings to the general practitioner consultation). Additionally, the combination of sexes in a consultation seemed to have an effect on the interaction, with woman general practitioner/female patient dyads (pairings) having the highest median patient-centredness score, woman general practitioner/male patient and man general practitioner/male patient dyads scoring the same as each other and man general practitioner/female patient dyads having the lowest median scores. CONCLUSION: the results suggest that women general practitioners, in this sample, were more patient centred than men general practitioners. The results also suggest that inherent inequalities exist, with female patients receiving a more patient-centred service from general practitioners of their own sex than from general practitioners of the opposite sex. Male patients, on the other hand, seemed to fare equally well, irrespective of the sex of their general practitioner. Training is required to address these inequalities and to improve the level of patient centredness in the consultation.

This paper describes patients' ideas about doctor's prescribing habits, their expectations for prescriptions and their self-reported behaviour in cashing prescriptions. It is based on semistructured interviews with 30 adult patients from two general practices. Views about doctors' prescribing habits ranged from those wanting more help with their symptoms saying that doctors underprescribe to those aware of doctors' pressure of work saying that they overprescribe. The desire for a prescription in a consultation can be related to the stage of the illness at which a patient consults; not all patients wanted a prescription or collected it if they received one. It is suggested that in appropriate cases, doctors could ask patients directly if they were expecting a prescription.

This paper evaluates the British government's Patients Charter from the perspective of patients admitted via accident and emergency departments. It uses qualitative data obtained about issues of concern to these patients to judge whether the standards set out in the Charter are appropriate to their priorities and, conversely, if there are issues of importance to these patients which the Charter overlooks. Semi-structured interviews were conducted with 83 patients admitted to two London hospitals. It is concluded that the rights and standards outlined in the Patients Charter are generally appropriate to these patients' experiences, although some are defined too narrowly. The study identified a number of issues of importance to patients which are not mentioned in the Patients Charter: pain relief, giving information, receiving information, reception staff, examinations and investigations, physical environment, and other people in casualty. The patient wants rather more than recent British government documents suggest.

BACKGROUND: Little attention has been paid to patients' ideas about medicines and such ideas might well have relevance for understanding non-adherence to medication. AIM: This qualitative study set out to describe the ideas about medicines and the self-reported adherence to medication of a general practice population. METHOD: Semistructured interviews were conducted with 30 adult patients (attenders and non-attenders) from two general practices. RESULTS: the main themes emerging from the analysis were: perceived properties of medicines; orientation towards medicines, that is, patients' general preference for taking or not taking medication; and actual usage of medicines. The data revealed that on the one hand much medicine taking was taken for granted and on the other hand that patients had many fears and powerful negative images of medicines. CONCLUSION: Any assessment of the appropriateness of a proposed treatment for an individual patient should include an exploration of his or her preferences, orientation towards medicines and social context.

The aim of this study was to examine cancer patients' reactions to the offer of access to their medical records, hospital doctors' preconceptions of patient access to medical records and the reality of access to records for both parties. Semistructured interviews were conducted with 32 patients and 21 hospital doctors. Hospital doctors were also shown letters from their department to the general practitioner and asked about any changes they would have made as a result of knowing about patient access to records. The results showed that most patients were able to judge for themselves if they wanted access or not and that patients who chose to look at their records found access to their records helpful and reassuring even if the news was bad. Doctors expected access to records to be harmful to patients but would not have wished to amend many of the letters they had written. Patient access to records can be a safe and useful adjunct to good patient care.

Questionnaires were given to 139 appointment attenders and 141 open access attenders prior to consultations at one general practice. These enquired about patients' attitudes toward common illness and its treatment. Data on prescribing were obtained from the general practitioners after the consultation. The results suggested that two sets of attitudes were present in the sample: a preference for self care and a preference for drug treatment. They did not suggest that open access attenders were more in favour of drug treatment than appointment attenders. Although the issuing of prescriptions was broadly in line with patients' attitudes, the only attitudinal statement significantly associated with doctors' prescribing behaviour was one reflecting a preference for drug treatment. A logit analysis showed that the effect of patients' attitudes was apparent for open access attenders but not appointment attenders. The data lend support to the hypothesis that doctors are more aware of the pressure to prescribe than of the preference for self care.

Semi-structured interviews were conducted with 24 hospital consultants and 47 general practice patients, asking for their opinions about a proposed policy of partial access to records in one general practice. Eleven consultants were opposed to the policy, 10 were in favour and three were classified as ambivalent. Arguments against access were couched largely in terms of consultants' own interests whereas arguments in favour of access were couched in terms of patients' interests. Although 81% of patients interviewed said that they should in principle be allowed to see their own records, only 51% wanted access to their own records. Fears expressed by consultants on patients' behalf are not necessarily well founded.

Individual general practitioners are known to vary widely in the number of patients they refer to hospital outpatient departments; indeed there is increasing concern that the 'high' referrers use a disproportionate quantity of National Health Service resources. Data from a one-week survey of referrals by 122 general practitioners in one health district showed that a different age-sex mix of patients consulting individual general practitioners might account for about one quarter of his or her referrals. The results also showed that different referral rates, calculated by using either workload or list size denominators, identified markedly different groups of high referrers. These different methods of measurement are discussed, and on practical grounds a referral rate based on actual referrals divided by mean practice list size is suggested for future comparisons.

Consistency of self-reported cigarette smoking habits was investigated in the MRC National Survey of Health and Development, using data collected at ages 20, 25, 31 and 36 years. of those claiming to be lifelong non-smokers at age 36, 7.9% had previously reported smoking at least one cigarette a day. Those cohort members with inconsistent records had smoked fewer cigarettes and were less likely to inhale than cohort members who smoked at age 36, and had started smoking later. Re-analysis of data collected by Friedman et al suggested that the effect of misclassification of ex-smokers was to reduce the relative risk of death from all causes, for men and women aged 35-54 years, by a factor of 5%. It is suggested that in future studies, those claiming to be lifelong non-smokers should be questioned about their habits in late adolescence and early adulthood.

Earlier work on the respiratory health of members of the Medical Research Council's national survey of health and development (1946 birth cohort) was extended to age 36. At that age measures of peak expiratory flow rate and respiratory symptoms, elicited by the MRC chronic bronchitis questionnaire, were made in 3261 cohort members. In both men and women lower peak expiratory flow and higher respiratory morbidity were independently associated not only with current indices of poor social circumstances and cigarette smoking but also with poor home environment at age 2 years and lower respiratory tract illness before age 10. The findings provide additional evidence for a causal relation between childhood respiratory experience and adult respiratory disease.

Fifty-five subjects with epilepsy were identified in the first 36 years of the 1946 birth cohort study. In 37 cases there was neither evident cause for the epilepsy nor associated brain-damage and these are referred to as 'uncomplicated', the rest as 'complicated'. Subjects with epilepsy came from poorer social backgrounds than the rest of the cohort. Mortality for both the complicated and uncomplicated groups was high. The educational and occupational achievements, marriage and parenthood, self-esteem and psychiatric morbidity of those surviving to adult life were compared with individually matched controls drawn from the same population. For the uncomplicated group there was no evidence of handicap at age 26, but 10 years later handicap was evident in this group in the economic sphere and in self-esteem.

The long term respiratory consequences of whooping cough in childhood were sought among members of the National Survey of Health and Development. Peak expiratory flow rate was measured when the survey members were 36 years old and seven respiratory symptoms were reported at the same time. Peak expiratory flow rate was slightly reduced in those who had had whooping cough as a child, and this difference became non-significant when other factors were taken into account. Unexpectedly, chronic cough was significantly less likely to be reported by those who had had whooping cough, and this difference remained significant only among men after other factors had been taken into account. This study failed to show a long term detrimental effect of whooping cough on the respiratory system.

Forty six cases of epilepsy were identified from the National Survey of Health and Development. An index of social visibility at school was constructed from teachers' reports of survey members' behaviour at 15 years of age. For the sample as a whole this index was significantly associated with poorer educational outcomes, after adjusting for social background and measured attainment, but was not associated with poor occupational achievement. However the index did not differentiate between epileptic and non-epileptic children. Although cases with epilepsy were shown to be more at risk of psychiatric disturbance, it is concluded that their lives were less disrupted than might have been expected, and that there is no evidence from this study that stigma affects the lives of those whose epilepsy was not complicated by other pathologies.