"The more you know, the more you realise it is really challenging to do": Tensions and uncertainties in person-centred support for people with long-term conditions.

OBJECTIVE: To identify and examine tensions and uncertainties in person-centred approaches to self-management support - approaches that take patients seriously as moral agents and orient support to enable them to live (and die) well on their own terms. METHODS: Interviews with 26 UK clinicians about working with people with diabetes or Parkinson's disease, conducted within a broader interdisciplinary project on self-management support. The analysis reported here was informed by philosophical reasoning and discussions with stakeholders. RESULTS: Person-centred approaches require clinicians to balance tensions between the many things that can matter in life, and their own and each patient's perspectives on these. Clinicians must ensure that their supportive efforts do not inadvertently disempower people. When attending to someone's particular circumstances and perspectives, they sometimes face intractable uncertainties, including about what is most important to the person and what, realistically, the person can or could do and achieve. The kinds of professional judgement that person-centred working necessitates are not always acknowledged and supported. CONCLUSION: Practical and ethical tensions are inherent in person-centred support and need to be better understood and addressed. PRACTICE IMPLICATIONS: Professional development and service improvement initiatives should recognise these tensions and uncertainties and support clinicians to navigate them well.

"Was that a success or not a success?": a qualitative study of health professionals' perspectives on support for people with long-term conditions.

BACKGROUND: Support for self-management (SSM) is a prominent strand of health policy internationally, particularly for primary care. It is often discussed and evaluated in terms of patients' knowledge, skills and confidence, health-related behaviours, disease control or risk reduction, and service use and costs. However, these goals are limited, both as guides to professional practice and as indicators of its quality. In order to better understand what it means to support self-management well, we examined health professionals' views of success in their work with people with long-term conditions. This study formed part of a broader project to develop a conceptual account of SSM that can reflect and promote good practice. METHODS: Semi-structured individual interviews (n = 26) and subsequent group discussions (n = 5 groups, 30 participants) with diverse health professionals working with people with diabetes and/or Parkinson's disease in NHS services in London, northern England or Scotland. The interviews explored examples of more and less successful work, ways of defining success, and ideas about what facilitates success in practice. Subsequent group discussions considered the practical implications of different accounts of SSM. Interviews and group discussions were audio-recorded, transcribed and analysed thematically. RESULTS: Participants identified a wide range of interlinked aspects or elements of success relating to: health, wellbeing and quality of life; how well people (can) manage; and professional-patient relationships. They also mentioned a number of considerations that have important implications for assessing the quality of their own performance. These considerations in part reflect variations in what matters and what is realistically achievable for particular people, in particular situations and at particular times, as well as the complexity of questions of attribution. CONCLUSIONS: A nuanced assessment of the quality of support for self-management requires attention to the responsiveness of professional practice to a wide, complex range of personal and situational states, as well as actions and interactions over time. A narrow focus on particular indicators can lead to insensitive or even perverse judgements and perhaps counterproductive effects. More open, critical discussions about both success and the assessment of quality are needed to facilitate good professional practice and service improvement initiatives.

Does access to a demand-led evidence briefing service improve uptake and use of research evidence by health service commissioners? A controlled before and after study.

BACKGROUND: The Health and Social Care Act mandated research use as a core consideration of health service commissioning arrangements in England. We undertook a controlled before and after study to evaluate whether access to a demand-led evidence briefing service improved the use of research evidence by commissioners compared with less intensive and less targeted alternatives. METHODS: Nine Clinical Commissioning Groups (CCGs) in the North of England received one of three interventions: (A) access to an evidence briefing service; (B) contact plus an unsolicited push of non-tailored evidence; or (C) unsolicited push of non-tailored evidence. Data for the primary outcome measure were collected at baseline and 12 months using a survey instrument devised to assess an organisations' ability to acquire, assess, adapt and apply research evidence to support decision-making. Documentary and observational evidence of the use of the outputs of the service were sought. RESULTS: Over the course of the study, the service addressed 24 topics raised by participating CCGs. At 12 months, the evidence briefing service was not associated with increases in CCG capacity to acquire, assess, adapt and apply research evidence to support decision-making, individual intentions to use research findings or perceptions of CCG relationships with researchers. Regardless of intervention received, participating CCGs indicated that they remained inconsistent in their research-seeking behaviours and in their capacity to acquire research. The informal nature of decision-making processes meant that there was little traceability of the use of evidence. Low baseline and follow-up response rates and missing data limit the reliability of the findings. CONCLUSIONS: Access to a demand-led evidence briefing service did not improve the uptake and use of research evidence by NHS commissioners compared with less intensive and less targeted alternatives. Commissioners appear well intentioned but ad hoc users of research. Further research is required on the effects of interventions and strategies to build individual and organisational capacity to use research.

We need to talk about purpose: a critical interpretive synthesis of health and social care professionals' approaches to self-management support for people with long-term conditions.

BACKGROUND: Health policies internationally advocate 'support for self-management', but it is not clear how the promise of the concept can be fulfilled. OBJECTIVE: To synthesize research into professional practitioners' perspectives, practices and experiences to help inform a reconceptualization of support for self-management. DESIGN: Critical interpretive synthesis using systematic searches of literature published 2000-2014. FINDINGS: We summarized key insights from 164 relevant papers in an annotated bibliography. The literature illustrates striking variations in approaches to support for self-management and interpretations of associated concepts. We focused particularly on the somewhat neglected question of the purpose of support. We suggest that this can illuminate and explain important differences between narrower and broader approaches. Narrower approaches support people to manage their condition(s) well in terms of disease control. This purpose can underpin more hierarchical practitioner-patient communication and more limited views of patient empowerment. It is often associated with experiences of failure and frustration. Broader approaches support people to manage well with their condition(s). They can keep work on disease control in perspective as attention focuses on what matters to people and how they can be supported to shape their own lives. Broader approaches are currently less evident in practice. DISCUSSION AND CONCLUSION: Broader approaches seem necessary to fulfil the promise of support for self-management, especially for patient empowerment. A commitment to enable people to live well with long-term conditions could provide a coherent basis for the forms and outcomes of support that policies aspire to. The implications of such a commitment need further attention.

Effects of a demand-led evidence briefing service on the uptake and use of research evidence by commissioners of health services: protocol for a controlled before and after study.

BACKGROUND: Clinical Commissioning Groups (CCGs) are mandated to use research evidence effectively to ensure optimum use of resources by the National Health Service (NHS), both in accelerating innovation and in stopping the use of less effective practices and models of service delivery. We intend to evaluate whether access to a demand-led evidence service improves uptake and use of research evidence by NHS commissioners compared with less intensive and less targeted alternatives. METHODS/DESIGN: This is a controlled before and after study involving CCGs in the North of England. Participating CCGs will receive one of three interventions to support the use of research evidence in their decision-making: 1) consulting plus responsive push of tailored evidence; 2) consulting plus an unsolicited push of non-tailored evidence; or 3) standard service unsolicited push of non-tailored evidence. Our primary outcome will be changed at 12 months from baseline of a CCGs ability to acquire, assess, adapt and apply research evidence to support decision-making. Secondary outcomes will measure individual clinical leads and managers' intentions to use research evidence in decision making. Documentary evidence of the use of the outputs of the service will be sought. A process evaluation will evaluate the nature and success of the interactions both within the sites and between commissioners and researchers delivering the service. DISCUSSION: The proposed research will generate new knowledge of direct relevance and value to the NHS. The findings will help to clarify which elements of the service are of value in promoting the use of research evidence. Those involved in NHS commissioning will be able to use the results to inform how best to build the infrastructure they need to acquire, assess, adapt and apply research evidence to support decision-making and to fulfil their statutory duties under the Health and Social Care Act.

Developing a reliable and valid patient measure of safety in hospitals (PMOS): a validation study.

INTRODUCTION: Patients represent an important and as yet untapped source of information about the factors that contribute to the safety of their care. The aim of the current study is to test the reliability and validity of the Patient Measure of Safety (PMOS), a brief patient-completed questionnaire that allows hospitals to proactively identify areas of safety concern and vulnerability, and to intervene before incidents occur. METHODS: 297 patients from 11 hospital wards completed the PMOS questionnaire during their stay; 25 completed a second 1 week later. The Agency for Healthcare Research and Quality (AHRQ) safety culture survey was completed by 190 staff on 10 of these wards. Factor structure, internal reliability, test-retest reliability, discriminant validity and convergent validity were assessed. RESULTS: Factor analyses revealed 8 key domains of safety (eg, communication and team work, access to resources, staff roles and responsibilities) explaining 58% variance of the original questionnaire. Cronbach's α (range 0.66-0.89) and test-retest reliability (r=0.75) were good. The PMOS positive index significantly correlated with staff reported 'perceptions of patient safety' (r=0.79) and 'patient safety grade' (r=-0.81) outcomes from the AHRQ (demonstrating convergent validity). A multivariate analysis of variance (MAMOVA) revealed that three PMOS factors and one retained single item discriminated significantly across the 11 wards. DISCUSSION: The PMOS is the first patient questionnaire used to assess factors contributing to safety in hospital settings from a patient perspective. It has demonstrated acceptable reliability and validity. Such information is useful to help hospitals/units proactively improve the safety of their care.

Treating patients as persons: a capabilities approach to support delivery of person-centered care.

Health services internationally struggle to ensure health care is "person-centered" (or similar). In part, this is because there are many interpretations of "person-centered care" (and near synonyms), some of which seem unrealistic for some patients or situations and obscure the intrinsic value of patients' experiences of health care delivery. The general concern behind calls for person-centered care is an ethical one: Patients should be "treated as persons." We made novel use of insights from the capabilities approach to characterize person-centered care as care that recognizes and cultivates the capabilities associated with the concept of persons. This characterization unifies key features from previous characterisations and can render person-centered care applicable to diverse patients and situations. By tying person-centered care to intrinsically valuable capability outcomes, it incorporates a requirement for responsiveness to individuals and explains why person-centered care is required independently of any contribution it may make to health gain.

Development of an evidence-based framework of factors contributing to patient safety incidents in hospital settings: a systematic review.

OBJECTIVE: The aim of this systematic review was to develop a 'contributory factors framework' from a synthesis of empirical work which summarises factors contributing to patient safety incidents in hospital settings. DESIGN: A mixed-methods systematic review of the literature was conducted. DATA SOURCES: Electronic databases (Medline, PsycInfo, ISI Web of knowledge, CINAHL and EMBASE), article reference lists, patient safety websites, registered study databases and author contacts. ELIGIBILITY CRITERIA: Studies were included that reported data from primary research in secondary care aiming to identify the contributory factors to error or threats to patient safety. RESULTS: 1502 potential articles were identified. 95 papers (representing 83 studies) which met the inclusion criteria were included, and 1676 contributory factors extracted. Initial coding of contributory factors by two independent reviewers resulted in 20 domains (eg, team factors, supervision and leadership). Each contributory factor was then coded by two reviewers to one of these 20 domains. The majority of studies identified active failures (errors and violations) as factors contributing to patient safety incidents. Individual factors, communication, and equipment and supplies were the other most frequently reported factors within the existing evidence base. CONCLUSIONS: This review has culminated in an empirically based framework of the factors contributing to patient safety incidents. This framework has the potential to be applied across hospital settings to improve the identification and prevention of factors that cause harm to patients.

Speaking up about safety concerns: multi-setting qualitative study of patients' views and experiences.

OBJECTIVES: To explore patients' and family members' experiences of and views about speaking up about safety concerns at the point of care. DESIGN: Qualitative study using 71 individual interviews and 12 focus group discussions. PARTICIPANTS AND SETTINGS: People with recent experience of one of five conditions or interventions associated with different safety problems (childhood asthma, diabetes, breast cancer, elective joint replacement and severe and enduring mental health problems) and people who had lodged concerns with healthcare providers were recruited from both NHS services (primary and secondary care) and patient support organisations. FINDINGS: Participants had identified various safety concerns in the course of their healthcare and had sometimes spoken up about these as they occurred. Their inclination and ability to speak up were apparently variously shaped by their assessments of the gravity of the threat of harm, the relative importance of their concern given other patients' needs and staff workloads and priorities, their confidence about their grounds for concern, roles and responsibilities and the likely consequences of speaking up. These assessments were pervasively influenced by the way healthcare staff behaved and related to them. People who had spoken up about concerns reported diverse responses from health professionals. Some responses averted harm or provided welcome reassurance, but others exacerbated anxieties and possibly contributed to patient harm. CONCLUSION: The potential for patients to contribute to their safety by speaking up about their concerns depends heavily on the quality of patient-professional interactions and relationships.

Translating research into practice in Leeds and Bradford (TRiPLaB): a protocol for a programme of research.

BACKGROUND: The National Institute for Health Research (NIHR) has funded nine Collaborations for Leadership in Applied Health Research and Care (CLAHRCs). Each CLAHRC is a partnership between higher education institutions (HEIs) and the NHS in nine UK regional health economies. The CLAHRC for Leeds, York, and Bradford comprises two 'research themes' and three 'implementation themes.' One of these implementation themes is Translating Research into Practice in Leeds and Bradford (TRiPLaB). TRiPLaB aims to develop, implement, and evaluate methods for inducing and sustaining the uptake of research knowledge into practice in order to improve the quality of health services for the people of Leeds and Bradford. METHODS: TRiPLaB is built around a three-stage, sequential, approach using separate, longitudinal case studies conducted with collaborating NHS organisations, TRiPLaB will select robust innovations to implement, conduct a theory-informed exploration of the local context using a variety of data collection and analytic methods, and synthesise the information collected to identify the key factors influencing the uptake and adoption of targeted innovations. This synthesis will inform the development of tailored, multifaceted, interventions designed to increase the translation of research findings into practice. Mixed research methods, including time series analysis, quasi-experimental comparison, and qualitative process evaluation, will be used to evaluate the impact of the implementation strategies deployed. CONCLUSION: TRiPLaB is a theory-informed, systematic, mixed methods approach to developing and evaluating tailored implementation strategies aimed at increasing the translation of research-based findings into practice in one UK health economy. Through active collaboration with its local NHS, TRiPLaB aims to improve the quality of health services for the people of Leeds and Bradford and to contribute to research knowledge regarding the interaction between context and adoption behaviour in health services.

Deconstructing media coverage of trastuzumab (Herceptin): an analysis of national newspaper coverage.

OBJECTIVE: To explore and critically describe the content and main narratives of UK national daily newspaper coverage of trastuzumab (Herceptin). DESIGN: We used the NewsBank database to search eight national daily newspapers, and their Sunday equivalents, retrospectively from 19 February 2006 back to the earliest mention of trastuzumab or Herceptin (19 May 1998). Setting UK national newspapers. MAIN OUTCOME MEASURES: To be eligible for inclusion, articles had to contain at least three sentences about trastuzumab. Articles that focused on the financial performance of companies associated with the drug were excluded from the analysis. For each included article, we extracted bibliographic details and data, and independently rated the reporting slant towards trastuzumab and, where relevant, the reporting slant towards access to treatment. RESULTS: We identified 361 articles that met the study inclusion criteria. The proprietary name of Herceptin was always used, with only eight articles mentioning the generic alternative. 294/361 included articles (81.5%) were rated as being positive towards trastuzumab, the remainder rated as neutral. Access to trastuzumab treatment was the main narrative running across included articles and reports of individual patients seeking treatment featured prominently throughout. In 208/361 of included articles (57%) the reporting slant towards access to trastuzumab treatment was rated as negative. 178/361 of included articles (49.3%) mentioned licensing, but rarely mentioned that licensing processes can only occur when the manufacturer applies for a licence. Only a minority of articles mentioned that the drug had to be licensed before it could be subject to the NICE approval process. CONCLUSIONS: Newspaper coverage of trastuzumab has been characterized by uncritical reporting. Journalists (and consumers) should be more questioning when confronted with information about new drugs and of the motives of those who seek to set the news agenda.

Emotional intelligence and patient-centred care.

The principles of patient-centred care are increasingly stressed as part of health care policy and practice. Explanations for why some practitioners seem more successful in achieving patient-centred care vary, but a possible role for individual differences in personality has been postulated. One of these, emotional intelligence (EI), is increasingly referred to in health care literature. This paper reviews the literature on EI in health care and poses a series of questions about the links between EI and patient-centred outcomes. Papers concerning empirical examinations of EI in a variety of settings were identified to determine the evidence base for its increasing popularity. The review suggests that a substantial amount of further research is required before the value of EI as a useful concept can be substantiated.

Patient involvement in treatment decision-making: the case for a broader conceptual framework.

OBJECTIVE: To consider the conceptualisation of patient involvement in treatment decision-making. METHOD: Conceptual review. RESULTS: Current models and measures of patient involvement in treatment decision-making tend to focus on communication within consultations and/or on the patient's use of information to consider the selection of one treatment option from a well-defined set. These narrowly focused models and measures may obscure the relevance of patient involvement in decision-making for some health care contexts and limit investigations of the relationships between patient involvement in decision-making and health care outcomes. We outline a broader conceptual framework that reflects more of the complexity of the concept of involvement. It acknowledges that patients can be involved not only because of what they say and do to influence a decision, but also by virtue of what they think and feel about their roles, efforts and contributions to decision-making and their relationships with their clinicians. The framework encompasses the full range of activities associated with decision-making. CONCLUSION: The proposed conceptual framework may broaden the relevance of patient involvement in decision-making and encourage a more comprehensive characterisation that may facilitate more sophisticated investigations of the relationships between patient involvement in decision-making and health care outcomes. PRACTICE IMPLICATIONS: Clinicians who aspire to facilitate patient involvement in decision-making need to look beyond the way they discuss health care options with patients. They should also consider how they might enable patients to engage in the full range of decision-making activities and to develop a positive sense of involvement in these activities and with their clinicians.

The significance for decision-making of information that is not exchanged by patients and health professionals during consultations.

Information exchange between patients and health professionals is fundamental to achieving patient participation in decision-making and shared decision-making is said to require the exchange of "all information relevant to decision-making". This paper reports on a qualitative investigation of instances in which information that was potentially relevant to decision-making was not exchanged in consultations. Consultations from 5 diverse clinical areas in the UK were video-recorded and the health professionals and patients involved were interviewed separately before and after their consultations. This analysis is based on cases involving 20 patients. It draws on data from their 26-recorded consultations and from the 137 associated interviews. Several strategies were used to identify instances in which patients and/or health professionals did not disclose information that was potentially relevant to decision-making. Analysis focussed on the types of information not disclosed, the reasons that health professionals and patients gave for non-disclosure, and the apparent or potential significance of the non-disclosure. We identified 34 instances of non-disclosure of information relating to the patient's problem and 52 instances of non-disclosure of information relating to treatment or management options. The types of information not disclosed were diverse and the reasons given for non-disclosure varied. Some, but not all, instances of non-disclosure had negative implications for the quality of decision-making and/or the patient's healthcare experience. Our findings have implications for future attempts to examine information exchange in consultations-whether for research or for professional assessment purposes. In particular, they highlight the importance of appraising instances of non-disclosure of information in context and of recognising the limitations of approaches that rely on single consultations and/or single perspectives for assessments of information exchange.

Further investigation of confirmed urinary tract infection (UTI) in children under five years: a systematic review.

BACKGROUND: Further investigation of confirmed UTI in children aims to prevent renal scarring and future complications. METHODS: We conducted a systematic review to determine the most effective approach to the further investigation of confirmed urinary tract infection (UTI) in children under five years of age. RESULTS: 73 studies were included. Many studies had methodological limitations or were poorly reported. Effectiveness of further investigations: One study found that routine imaging did not lead to a reduction in recurrent UTIs or renal scarring. Diagnostic accuracy: The studies do not support the use of less invasive tests such as ultrasound as an alternative to renal scintigraphy, either to rule out infection of the upper urinary tract (LR- = 0.57, 95%CI: 0.47, 0.68) and thus to exclude patients from further investigation or to detect renal scarring (LR+ = 3.5, 95% CI: 2.5, 4.8). None of the tests investigated can accurately predict the development of renal scarring. The available evidence supports the consideration of contrast-enhanced ultrasound techniques for detecting vesico-ureteric reflux (VUR), as an alternative to micturating cystourethrography (MCUG) (LR+ = 14.1, 95% CI: 9.5, 20.8; LR- = 0.20, 95%CI: 0.13, 0.29); these techniques have the advantage of not requiring exposure to ionising radiation. CONCLUSION: There is no evidence to support the clinical effectiveness of routine investigation of children with confirmed UTI. Primary research on the effectiveness, in terms of improved patient outcome, of testing at all stages in the investigation of confirmed urinary tract infection is urgently required.

Assessing patients' participation and quality of decision-making: insights from a study of routine practice in diverse settings.

In the context of a qualitative study exploring patients' participation in decision-making, we investigated how people interpret and respond to structured questions about decision-making about their health care. Seventy-four participants who attended consultations in five clinical areas completed structured measures of decision-making and discussed their responses during interviews. They identified a range of decisions as having being made in their consultations. People who picked particular responses on measures of participation in and satisfaction with decision-making gave varied explanations for these, not all of which were consistent with the way their responses are usually interpreted. The interview data suggest that people's evaluations of decisions to follow a particular course of action were influenced by various factors including what they focused on as the alternative, their perceptions of constraints on choices, and their assessment of how good the best possible solution was. Responses to simple structured measures of participation in and satisfaction with decision-making should be interpreted with caution. They are not reliably attributable to health care providers' actions and are thus unsuitable for performance assessment purposes.

Systematic review of the effectiveness of stage based interventions to promote smoking cessation.

OBJECTIVE: To evaluate the effectiveness of interventions using a stage based approach in bringing about positive changes in smoking behaviour. DESIGN: Systematic review. DATA SOURCES: 35 electronic databases, catalogues, and internet resources (from inception to July 2002). Bibliographies of retrieved references were scanned for other relevant publications, and authors were contacted if necessary. RESULTS: 23 randomised controlled trials were reviewed; two reported details of an economic evaluation. Eight trials reported effects in favour of stage based interventions, three trials showed mixed results, and 12 trials found no statistically significant differences between a stage based intervention and a non-stage based intervention or no intervention. Eleven trials compared a stage based intervention with a non-stage based intervention, and one reported statistically significant effects in favour of the stage based intervention. Two studies reported mixed effects, and eight trials reported no statistically significant differences between groups. The methodological quality of the trials was mixed, and few reported any validation of the instrument used to assess participants' stage of change. Overall, the evidence suggests that stage based interventions are no more effective than non-stage based interventions or no intervention in changing smoking behaviour. CONCLUSIONS: Limited evidence exists for the effectiveness of stage based interventions in changing smoking behaviour.