Search results
Found 19987 matches for
We lead multidisciplinary applied research and training to rethink the way health care is delivered in general practice and across the community.
RAMESES publication standards: Meta-narrative reviews
Background: Meta-narrative review is one of an emerging menu of new approaches to qualitative and mixed-method systematic review. A meta-narrative review seeks to illuminate a heterogeneous topic area by highlighting the contrasting and complementary ways researchers have studied the same or a similar topic. No previous publication standards exist for the reporting of meta-narrative reviews. This publication standard was developed as part of the RAMESES (Realist And MEta-narrative Evidence Syntheses: Evolving Standards) project. The project's aim is to produce preliminary publication standards for meta-narrative reviews. Design: A mixed method study synthesising data between 2011 to 2012 from a literature review, online Delphi panel and feedback from training, workshops and email list. Methods: We: (a) collated and summarized existing literature on the principles of good practice in meta-narrative reviews; (b) considered the extent to which these principles had been followed by published reviews, thereby identifying how rigor may be lost and how existing methods could be improved; (c) used a three-round online Delphi method with an interdisciplinary panel of national and international experts in evidence synthesis, meta-narrative reviews, policy, and/or publishing to produce and iteratively refine a draft set of methodological steps, and publication standards; (d) provided real-time support to ongoing meta-narrative reviews and the open-access RAMESES online discussion list so as to capture problems and questions as they arose; and (e) synthesized expert input, evidence review, and real-time problem analysis into a definitive set of standards. Results: We identified nine published meta-narrative reviews, provided real-time support to four ongoing reviews, and captured questions raised in the RAMESES discussion list. Through analysis and discussion within the project team, we summarized the published literature, and common questions and challenges into briefing materials for the Delphi panel, comprising 33 members. Within three rounds this panel had reached consensus on 20 key publication standards, with an overall response rate of 90%. Conclusions: This project used multiple sources to draw together evidence and expertise in meta-narrative reviews. For each item we have included an explanation for why it is important and guidance on how it might be reported. Meta-narrative review is a relatively new method for evidence synthesis and as experience and methodological developments occur, we anticipate that these standards will evolve to reflect further theoretical and methodological developments. We hope that these standards will act as a resource that will contribute to improving the reporting of meta-narrative reviews. © 2013 The Authors.
RAMESES publication standards: Realist syntheses
Background: There is growing interest in realist synthesis as an alternative systematic review method. This approach offers the potential to expand the knowledge base in policy-relevant areas - for example, by explaining the success, failure or mixed fortunes of complex interventions. No previous publication standards exist for reporting realist syntheses. This standard was developed as part of the RAMESES (Realist And MEta-narrative Evidence Syntheses: Evolving Standards) project. The project's aim is to produce preliminary publication standards for realist systematic reviews. Design: A mixed method study synthesising data between 2011-2012 from a literature review, online Delphi panel and feedback from training, workshops and email list. Methods: We: (a) collated and summarized existing literature on the principles of good practice in realist syntheses; (b) considered the extent to which these principles had been followed by published syntheses, thereby identifying how rigour may be lost and how existing methods could be improved; (c) used a three-round online Delphi method with an interdisciplinary panel of national and international experts in evidence synthesis, realist research, policy and/or publishing to produce and iteratively refine a draft set of methodological steps and publication standards; (d) provided real-time support to ongoing realist syntheses and the open-access RAMESES online discussion list to capture problems and questions as they arose; and (e) synthesized expert input, evidence syntheses and real-time problem analysis into a definitive set of standards. Results: We identified 35 published realist syntheses, provided real-time support to 9 ongoing syntheses and captured questions raised in the RAMESES discussion list. Through analysis and discussion within the project team, we summarized the published literature and common questions and challenges into briefing materials for the Delphi panel, comprising 37 members. Within 3 rounds this panel had reached consensus on 19 key publication standards, with an overall response rate of 91%. Conclusions: This project used multiple sources to develop and draw together evidence and expertise in realist synthesis. For each item we have included an explanation for why it is important and guidance on how it might be reported. Realist synthesis is a relatively new method for evidence synthesis and as experience and methodological developments occur, we anticipate that these standards will evolve to reflect further methodological developments. We hope that these standards will act as a resource that will contribute to improving the reporting of realist syntheses. © 2013 The Authors.
Theorising big IT programmes in healthcare: Strong structuration theory meets actor-network theory
The UK National Health Service is grappling with various large and controversial IT programmes. We sought to develop a sharper theoretical perspective on the question " What happens - at macro-, meso- and micro-level - when government tries to modernise a health service with the help of big IT?" Using examples from data fragments at the micro-level of clinical work, we considered how structuration theory and actor-network theory (ANT) might be combined to inform empirical investigation. Giddens (1984) argued that social structures and human agency are recursively linked and co-evolve. ANT studies the relationships that link people and technologies in dynamic networks. It considers how discourses become inscribed in data structures and decision models of software, making certain network relations irreversible. Stones' (2005) strong structuration theory (SST) is a refinement of Giddens' work, systematically concerned with empirical research. It views human agents as linked in dynamic networks of position-practices. A quadripartite approcach considers [a] external social structures (conditions for action); [b] internal social structures (agents' capabilities and what they 'know' about the social world); [c] active agency and actions and [d] outcomes as they feed back on the position-practice network. In contrast to early structuration theory and ANT, SST insists on disciplined conceptual methodology and linking this with empirical evidence. In this paper, we adapt SST for the study of technology programmes, integrating elements from material interactionism and ANT. We argue, for example, that the position-practice network can be a socio-technical one in which technologies in conjunction with humans can be studied as 'actants'. Human agents, with their complex socio-cultural frames, are required to instantiate technology in social practices. Structurally relevant properties inscribed and embedded in technological artefacts constrain and enable human agency. The fortunes of healthcare IT programmes might be studied in terms of the interplay between these factors. © 2010 Elsevier Ltd.
Thinking about think tanks in health care: A call for a new research agenda
Little sociological attention has been given to the role of think tanks in health policy and planning. Existing work in political science and public administration tends to define and categorise think tanks and situate them as a disinterested source of policy expertise. Despite the increasingly visible presence of think tanks in the world of health care, such work has done little to reveal how they operate, by whom and to what ends. Our article seeks to redress this firstly by examining why they have remained relatively hidden in academic analyses and secondly by advocating an interpretive approach that incorporates think tanks within the wider landscape of health policy and planning. In contrast to most existing literature, an interpretive approach acknowledges that much of the messy business of healthcare policy and planning remains hidden from view and that much can be gleaned by examining the range of organisations, actors, coalitions, everyday activities, artefacts and interactions that make up the think tank stage and that work together to shape health policy and planning. Given the paucity of research in this area, we urge the medical sociology community to open the field to further academic scrutiny. © 2013 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd.
Higher education governance as language games: A wittgensteinian case study of the breakdown of governance at the london school of economics 2004-2011
This paper calls for a more detailed study of social practices in the analysis of governance failures. Using the Woolf report on the breakdown of governance at the London School of Economics as a case study and Wittgenstein's notion of language games as an analytic lens, the author argues that widely used institutional and structural theories of governance are necessary but not sufficient to explain how governance works and why it fails. It is also necessary to understand, through a detailed micro-analysis of talk and action, the contingent social practices occurring within and outside these structures. This matters because structural accounts of governance tend to present solutions as changes in structures, standards and procedures or measures to make academics comply with these. A language games framing, in contrast, suggests that it matters less what form the structures of governance take than the extent to which they allow effective deliberation on the numerous contradictions and paradoxes that make up their day-to-day work. The paper concludes that those charged with governing universities should maximise opportunities for individuals and groups to deliberate on, and 'muddle through', the multiple and conflicting demands and accountabilities that characterise contemporary higher education.
"this does my head in". Ethnographic study of self-management by people with diabetes
Background: Self-management is rarely studied 'in the wild'. We sought to produce a richer understanding of how people live with diabetes and why self-management is challenging for some. Method. Ethnographic study supplemented with background documents on social context. We studied a socio-economically and ethnically diverse UK population. We sampled 30 people with diabetes (15 type 1, 15 type 2) by snowballing from patient groups, community contacts and NHS clinics. Participants (aged 5-88, from a range of ethnic and socio-economic groups) were shadowed at home and in the community for 2-4 periods of several hours (total 88 visits, 230 hours); interviewed (sometimes with a family member or carer) about their self-management efforts and support needs; and taken out for a meal. Detailed field notes were made and annotated. Data analysis was informed by structuration theory, which assumes that individuals' actions and choices depend on their dispositions and capabilities, which in turn are shaped and constrained (though not entirely determined) by wider social structures. Results: Self-management comprised both practical and cognitive tasks (e.g. self-monitoring, menu planning, medication adjustment) and socio-emotional ones (e.g. coping with illness, managing relatives' input, negotiating access to services or resources). Self-management was hard work, and was enabled or constrained by economic, material and socio-cultural conditions within the family, workplace and community. Some people managed their diabetes skilfully and flexibly, drawing on personal capabilities, family and social networks and the healthcare system. For others, capacity to self-manage (including overcoming economic and socio-cultural constraints) was limited by co-morbidity, cognitive ability, psychological factors (e.g. under-confidence, denial) and social capital. The consequences of self-management efforts strongly influenced people's capacity and motivation to continue them. Conclusion: Self-management of diabetes is physically, intellectually, emotionally and socially demanding. Non-engagement with self-management may make sense in the context of low personal resources (e.g. health literacy, resilience) and overwhelming personal, family and social circumstances. Success of self-management as a policy solution will be affected by interacting influences at three levels: [a] at micro level by individuals' dispositions and capabilities; [b] at meso level by roles, relationships and material conditions within the family and in the workplace, school and healthcare organisation; and [c] at macro level by prevailing economic conditions, cultural norms and expectations, and the underpinning logic of the healthcare system. We propose that the research agenda on living with diabetes be extended and the political economy of self-management systematically studied. © 2012 Hinder and Greenhalgh; licensee BioMed Central Ltd.
Protocol - Realist and meta-narrative evidence synthesis: Evolving Standards (RAMESES)
Background: There is growing interest in theory-driven, qualitative and mixed-method approaches to systematic review as an alternative to (or to extend and supplement) conventional Cochrane-style reviews. These approaches offer the potential to expand the knowledge base in policy-relevant areas - for example by explaining the success, failure or mixed fortunes of complex interventions. However, the quality of such reviews can be difficult to assess. This study aims to produce methodological guidance, publication standards and training resources for those seeking to use the realist and/or meta-narrative approach to systematic review. Methods/design. We will: [a] collate and summarise existing literature on the principles of good practice in realist and meta-narrative systematic review; [b] consider the extent to which these principles have been followed by published and in-progress reviews, thereby identifying how rigour may be lost and how existing methods could be improved; [c] using an online Delphi method with an interdisciplinary panel of experts from academia and policy, produce a draft set of methodological steps and publication standards; [d] produce training materials with learning outcomes linked to these steps; [e] pilot these standards and training materials prospectively on real reviews-in-progress, capturing methodological and other challenges as they arise; [f] synthesise expert input, evidence review and real-time problem analysis into more definitive guidance and standards; [g] disseminate outputs to audiences in academia and policy. The outputs of the study will be threefold:. 1. Quality standards and methodological guidance for realist and meta-narrative reviews for use by researchers, research sponsors, students and supervisors. 2. A 'RAMESES' (Realist and Meta-review Evidence Synthesis: Evolving Standards) statement (comparable to CONSORT or PRISMA) of publication standards for such reviews, published in an open-access academic journal. 3. A training module for researchers, including learning outcomes, outline course materials and assessment criteria. Discussion. Realist and meta-narrative review are relatively new approaches to systematic review whose overall place in the secondary research toolkit is not yet fully established. As with all secondary research methods, guidance on quality assurance and uniform reporting is an important step towards improving quality and consistency of studies. © 2011 Greenhalgh et al; licensee BioMed Central Ltd.
The view from nowhere? How think tanks work to shape health policy
Think tanks seek to shape the business of government by offering policy expertise in a number of areas, including health care. This expertise tends to be presented as ‘the view from nowhere’ – independent, value-neutral expertise that can inform policy. We challenge this view by examining what ‘independence’ means and how it is performed. We present an interpretive policy analysis of data collected from four UK-based think tanks that have sought to influence health policy. Our analysis demonstrates how a sample of healthcare think tanks publicly positioned themselves as ‘independent’ organizations. They drew on technocratic health planning discourse to emphasize a range of knowledge-related activities, artifacts and instrumental language that, informants suggested, allowed them to feed emerging evidence into policy and improve health services. Such positioning seemed to provide them with legitimacy in the eyes of decision makers. A parallel set of think tank activities (e.g., meetings with parliamentarians) took place ‘back-stage’ and focused on influencing health policy and, in the context of recent proposals to reform the English National Health Service, lending broad though not unqualified support to government proposals to extend market principles in health care. Informants appeared to seek to neutralize their presentation of such ‘back-stage’ influencing through a range of discursive strategies.
Illness perceptions and explanatory models of viral hepatitis B & C among immigrants and refugees: a narrative systematic review
BACKGROUND: Hepatitis B and C (HBV, HCV) infections are associated with high morbidity and mortality. Many countries with traditionally low prevalence (such as UK) are now planning interventions (screening, vaccination, and treatment) of high-risk immigrants from countries with high prevalence. This review aimed to synthesise the evidence on immigrants' knowledge of HBV and HCV that might influence the uptake of clinical interventions. The review was also used to inform the design and successful delivery of a randomised controlled trial of targeted screening and treatment. METHODS: Five databases (PubMed, CINHAL, SOCIOFILE, PsycINFO & Web of Science) were systematically searched, supplemented by reference tracking, searches of selected journals, and of relevant websites. We aimed to identify qualitative and quantitative studies that investigated knowledge of HBV and HCV among immigrants from high endemic areas to low endemic areas. Evidence, extracted according to a conceptual framework of Kleinman's explanatory model, was subjected to narrative synthesis. We adapted the PEN-3 model to categorise and analyse themes, and recommend strategies for interventions to influence help-seeking behaviour. RESULTS: We identified 51 publications including quantitative (n = 39), qualitative (n = 11), and mixed methods (n = 1) designs. Most of the quantitative studies included small samples and had heterogeneous methods and outcomes. The studies mainly concentrated on hepatitis B and ethnic groups of South East Asian immigrants residing in USA, Canada, and Australia. Many immigrants lacked adequate knowledge of aetiology, symptoms, transmission risk factors, prevention strategies, and treatment, of hepatitis HBV and HCV. Ethnicity, gender, better education, higher income, and English proficiency influenced variations in levels and forms of knowledge. CONCLUSION: Immigrants are vulnerable to HBV and HCV, and risk life-threatening complications from these infections because of poor knowledge and help-seeking behaviour. Primary studies in this area are extremely diverse and of variable quality precluding meta-analysis. Further research is needed outside North America and Australia.
Assessing the outcomes of participatory research: Protocol for identifying, selecting, appraising and synthesizing the literature for realist review
Background: Participatory Research (PR) entails the co-governance of research by academic researchers and end-users. End-users are those who are affected by issues under study (e.g., community groups or populations affected by illness), or those positioned to act on the knowledge generated by research (e.g., clinicians, community leaders, health managers, patients, and policy makers). Systematic reviews assessing the generalizable benefits of PR must address: the diversity of research topics, methods, and intervention designs that involve a PR approach; varying degrees of end-user involvement in research co-governance, both within and between projects; and the complexity of outcomes arising from long-term partnerships.Methods: We addressed the above mentioned challenges by adapting realist review methodology to PR assessment, specifically by developing inductively-driven identification, selection, appraisal, and synthesis procedures. This approach allowed us to address the non-uniformity and complexity of the PR literature. Each stage of the review involved two independent reviewers and followed a reproducible, systematic coding and retention procedure. Retained studies were completed participatory health interventions, demonstrated high levels of participation by non-academic stakeholders (i.e., excluding studies in which end-users were not involved in co-governing throughout the stages of research) and contained detailed descriptions of the participatory process and context. Retained sets are being mapped and analyzed using realist review methods.Results: The librarian-guided search string yielded 7,167 citations. A total of 594 citations were retained after the identification process. Eighty-three papers remained after selection. Principle Investigators (PIs) were contacted to solicit all companion papers. Twenty-three sets of papers (23 PR studies), comprising 276 publications, passed appraisal and are being synthesized using realist review methods.Discussion: The systematic and stage-based procedure addressed challenges to PR assessment and generated our robust understanding of complex and heterogeneous PR practices. To date, realist reviews have focussed on evaluations of relatively uniform interventions. In contrast our PR search yielded a wide diversity of partnerships and research topics. We therefore developed tools to achieve conceptual clarity on the PR field, as a beneficial precursor to our theoretically-driven synthesis using realist methods. Findings from the ongoing review will be provided in forthcoming publications. © 2011 Jagosh et al; licensee BioMed Central Ltd.
Assessing the benefits of participatory research: A rationale for a realist review
Participatory research (PR) experts believe that increased community and stakeholder participation in research augments program pertinence, quality, outcome, sustainability, uptake, and transferability. There is, however, a dearth of assessments and measurement tools to demonstrate the contribution of participation in health research and interventions. One systematic review of PR, conducted for the Agency for Health Research and Quality (AHRQ), provided no conclusive evidence concerning the benefits of community participation to enhance research and health outcomes. To overcome methodological gaps and barriers of the AHRQ review, we propose to conduct a systematic realist review, which can be understood as a theory-driven qualitative review capable of capturing the often complex, diffuse and obtuse evidence concerning participation. Reviewing how PR mechanisms and contextual factors mediate and moderate outcomes, the review will generate and test hypotheses (middle-range theories) conceptualizing the benefits of participation and will portray the manner and circumstances in which participation influences outcomes. © The Author(s) 2011.
Rhetoric, Evidence and Policymaking: a Case Study of Priority Setting in Primary Care
This chapter describes a study undertaken as part of the UCL Evidence programme to explore how policymakers talk about and reason with evidence. Specifically, researchers were interested in the micro-processes of deliberation and meaning-making practices of a group of people charged with prioritising health care in an NHS Primary Care Trust in the UK. The chapter describes how the research study brought together ideas from rhetorical theory and methods of discourse analysis to develop an innovative approach to exploring how evidence is constituted at the micro-level of social interaction and communication. It presents empirical data to illuminate the representation and meaning of evidence within one particular policymaking forum, and to highlight contrasting constructions of the policymaking process.
Informing the design of a national screening and treatment programme for chronic viral hepatitis in primary care: Qualitative study of at-risk immigrant communities and healthcare professionals Healthcare needs and demand
Background: Effective strategies are needed to provide screening and treatment for hepatitis B and C to immigrant groups in the UK at high risk of chronic infection. This study aimed to build an understanding of the knowledge, beliefs and attitudes towards these conditions and their management in a range of high-risk minority ethnic communities and health professionals, in order to inform the design of a screening and treatment programme in primary care. Methods: Qualitative data collection consisted of three sequential phases- (i) semi-structured interviews with key informants (n = 17), (ii) focus groups with people from Chinese, Pakistani, Roma, Somali, and French- and English-speaking African communities (n = 95), and (iii) semi-structured interviews with general practitioners (n = 6). Datasets from each phase were analysed using the Framework method. Results: Key informants and general practitioners perceived that there was limited knowledge and understanding about hepatitis B and C within high-risk immigrant communities, and that chronic viral hepatitis did not typically feature in community discourses about serious illness. Many focus group participants were confused about the differences between types of viral hepatitis, held misconceptions regarding transmission, and were unaware of the asymptomatic nature of chronic infection. Most welcomed the idea of a screening programme, but key informants and focus group participants also identified numerous practical barriers to engagement with primary care-based screening and treatment; including language and communication difficulties, limited time (due to long working hours), and (for some) low levels of trust and confidence in general practice-based care. General practitioners expressed concerns about the workload implications and sustainability of screening and treating immigrant patients for chronic viral hepatitis in primary care. Conclusions: Strategies to reduce the burden of chronic viral hepatitis in immigrant communities will need to consider how levels of understanding about hepatitis B and C within these communities, and barriers to accessing healthcare, may affect capacity to engage with screening and treatment. Services may need to work with community groups and language support services to provide information and wider encouragement for screening. Primary care services will need ongoing consultation regarding their support needs to deliver hepatitis screening and treatment programmes.
008 pp: beyond effectiveness: conducting qualitative research alongside a cluster randomised controlled trial of hiv testing in general practice.
I worked as a trial manager of a cluster randomized controlled trial of rapid HIV testing in primary care settings over a 2.5 year period. This left me with a number of questions that were unanswered by the trial design. I have since undertaken a PhD applying qualitative methodology to explore trial phenomena, including process evaluation, case study and qualitative interviews. We applied the Diffusion of Innovations in Healthcare Settings(a) model to process data from the trial to explore high and low performing practices. This provided a rich picture of the intervention implementation process, as intended; however this data also prompted the need to revisit some of the assumptions upon which the trial was based. The trial assumed rapid testing would detect undiagnosed HIV however the exploration of patient data revealed this was not always the case. For example, already knowing their status, one patient used the rapid test to manage a number of factors related to their identity and personal circumstances, demonstrating the way testing and treatment creates meaning for patients. It also echoes what Annemarie Mol suggests in the Logic of Care, that we pay attention not only to what technologies are supposed to do, but what they happen to do.(b) This example, among other unexpected findings, highlights the need for a greater theorisation of the data and the unravelling of trial assumptions. We explore the experience of conducting qualitative analysis alongside a cluster randomised controlled trial related to a stigmatised illness and discuss the challenges and insights gained in the process. (a)Greenhalgh T, Robert G, McFarlane F, et al. Diffusion of innovations in service organizations: systematic review and recommendations. Milbank Quarterly 2004;82:581-629. (b)Mol A. The logic of care: health and the problem of patient choice. London, United Kingdom: Routledge, 2008.
10 years of mindlines: A systematic review and commentary
Background: In 2004, Gabbay and le May showed that clinicians generally base their decisions on mindlines-internalised and collectively reinforced tacit guidelines-rather than consulting written clinical guidelines. We considered how the concept of mindlines has been taken forward since. Methods: We searched databases from 2004 to 2014 for the term 'mindline(s)' and tracked all sources citing Gabbay and le May's 2004 article. We read and re-read papers to gain familiarity and developed an interpretive analysis and taxonomy by drawing on the principles of meta-narrative systematic review. Results: In our synthesis of 340 papers, distinguished between authors who used mindlines purely in name ('nominal' view) sometimes dismissing them as a harmful phenomenon, and authors who appeared to have understood the term's philosophical foundations. The latter took an 'in-practice' view (studying how mindlines emerge and spread in real-world settings), a 'theoretical and philosophical' view (extending theory) or a 'solution focused' view (exploring how to promote and support mindline development). We found that it is not just clinicians who develop mindlines: so do patients, in face-to-face and (potentially) online communities. Conclusions: The concept of mindlines challenges the naïve rationalist view of knowledge implicit in some EBM publications, but the term appears to have been misunderstood (and prematurely dismissed) by some authors. By further studying mindlines empirically and theoretically, there is potential to expand EBM's conceptual toolkit to produce richer forms of 'evidence-based' knowledge. We outline a suggested research agenda for achieving this goal.
Illness perceptions and explanatory models of viral hepatitis B & C among immigrants and refugees: a narrative systematic review.
BACKGROUND: Hepatitis B and C (HBV, HCV) infections are associated with high morbidity and mortality. Many countries with traditionally low prevalence (such as UK) are now planning interventions (screening, vaccination, and treatment) of high-risk immigrants from countries with high prevalence. This review aimed to synthesise the evidence on immigrants' knowledge of HBV and HCV that might influence the uptake of clinical interventions. The review was also used to inform the design and successful delivery of a randomised controlled trial of targeted screening and treatment. METHODS: Five databases (PubMed, CINHAL, SOCIOFILE, PsycINFO & Web of Science) were systematically searched, supplemented by reference tracking, searches of selected journals, and of relevant websites. We aimed to identify qualitative and quantitative studies that investigated knowledge of HBV and HCV among immigrants from high endemic areas to low endemic areas. Evidence, extracted according to a conceptual framework of Kleinman's explanatory model, was subjected to narrative synthesis. We adapted the PEN-3 model to categorise and analyse themes, and recommend strategies for interventions to influence help-seeking behaviour. RESULTS: We identified 51 publications including quantitative (n = 39), qualitative (n = 11), and mixed methods (n = 1) designs. Most of the quantitative studies included small samples and had heterogeneous methods and outcomes. The studies mainly concentrated on hepatitis B and ethnic groups of South East Asian immigrants residing in USA, Canada, and Australia. Many immigrants lacked adequate knowledge of aetiology, symptoms, transmission risk factors, prevention strategies, and treatment, of hepatitis HBV and HCV. Ethnicity, gender, better education, higher income, and English proficiency influenced variations in levels and forms of knowledge. CONCLUSION: Immigrants are vulnerable to HBV and HCV, and risk life-threatening complications from these infections because of poor knowledge and help-seeking behaviour. Primary studies in this area are extremely diverse and of variable quality precluding meta-analysis. Further research is needed outside North America and Australia.
What is quality in assisted living technology? The ARCHIE framework for effective telehealth and telecare services
BACKGROUND: We sought to define quality in telehealth and telecare with the aim of improving the proportion of patients who receive appropriate, acceptable and workable technologies and services to support them living with illness or disability. METHODS: This was a three-phase study: (1) interviews with seven technology suppliers and 14 service providers, (2) ethnographic case studies of 40 people, 60 to 98 years old, with multi-morbidity and assisted living needs and (3) 10 co-design workshops. In phase 1, we explored barriers to uptake of telehealth and telecare. In phase 2, we used ethnographic methods to build a detailed picture of participants' lives, illness experiences and technology use. In phase 3, we brought users and their carers together with suppliers and providers to derive quality principles for assistive technology products and services. RESULTS: Interviews identified practical, material and organisational barriers to smooth introduction and continued support of assistive technologies. The experience of multi-morbidity was characterised by multiple, mutually reinforcing and inexorably worsening impairments, producing diverse and unique care challenges. Participants and their carers managed these pragmatically, obtaining technologies and adapting the home. Installed technologies were rarely fit for purpose. Support services for technologies made high (and sometimes oppressive) demands on users. Six principles emerged from the workshops. Quality telehealth or telecare is 1) ANCHORED in a shared understanding of what matters to the user; 2) REALISTIC about the natural history of illness; 3) CO-CREATIVE, evolving and adapting solutions with users; 4) HUMAN, supported through interpersonal relationships and social networks; 5) INTEGRATED, through attention to mutual awareness and knowledge sharing; 6) EVALUATED to drive system learning. CONCLUSIONS: Technological advances are important, but must be underpinned by industry and service providers following a user-centred approach to design and delivery. For the ARCHIE principles to be realised, the sector requires: (1) a shift in focus from product ('assistive technologies') to performance ('supporting technologies-in-use'); (2) a shift in the commissioning model from standardised to personalised home care contracts; and (3) a shift in the design model from 'walled garden', branded products to inter-operable components that can be combined and used flexibly across devices and platforms. Please see related article: http://dx.doi.org/10.1186/s12916-015-0305-8.
Caring for the patient, caring for the record: An ethnographic study of 'back office' work in upholding quality of care in general practice
Background: The quality of information recorded about patient care is considered key to improving the overall quality, safety and efficiency of patient care. Assigning codes to patients' records is an important aspect of this documentation. Current interest in large datasets in which individual patient data are collated (e.g. proposed NHS care.data project) pays little attention to the details of how 'data' get onto the record. This paper explores the work of summarising and coding records, focusing on 'back office' practices, identifying contributors and barriers to quality of care. Methods: Ethnographic observation (187 hours) of clinical, management and administrative staff in two UK general practices with contrasting organisational characteristics. This involved observation of working practices, including shadowing, recording detailed field notes, naturalistic interviews and analysis of key documents relating to summarising and coding. Ethnographic analysis drew on key sensitizing concepts to build a 'thick description' of coding practices, drawing these together in a narrative synthesis. Results: Coding and summarising electronic patient records is complex work. It depends crucially on nuanced judgements made by administrators who combine their understanding of: clinical diagnostics; classification systems; how healthcare is organised; particular working practices of individual colleagues; current health policy. Working with imperfect classification systems, diagnostic uncertainty and a range of local practical constraints, they manage a moral tension between their idealised aspiration of a 'gold standard' record and a pragmatic recognition that this is rarely achievable in practice. Adopting a range of practical workarounds, administrators position themselves as both formally accountable to their employers (general practitioners), and informally accountability to individual patients, in a coding process which is shaped not only by the 'facts' of the case, but by ongoing working relationships which are co-constructed alongside the patient's summary. Conclusion: Data coding is usually conceptualised as either a technical task, or as mundane, routine work, and usually remains invisible. This study offers a characterisation of coding as a socially complex site of moral work through which new lines of accountability are enacted in the workplace, and casts new light on the meaning of coded data as conceptualised in the 'quality of care' discourse.