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Abstract Recent health policy renders patients increasingly responsible for managing their health via digital technology such as health apps and online patient platforms. This paper discusses underlying tensions between empowerment and self-discipline embodied in discourses of technological self-care. It presents findings from documentary analysis and interviews with key players in the English digital health context including policy makers, health designers and patient organisations. We show how discourses ascribe to patients an enterprising identity, which is inculcated with economic interests and engenders self-discipline. However, this reading does not capture all implications of technological self-care. A governmentality lens also shows that technological self-care opens up the potential for a de-centring of medical knowledge and its subsequent communalization. The paper contributes to Foucauldian healthcare scholarship by showing how technology could engender agential actions that operate at the margins of an enterprising discourse. Highlights • Digital health policy in UK assumes an enterprising & empowered patient identity. • Tensions between empowerment & discipline occur as patients self-care digitally. • Digital health creates space for agential actions that improve communal health. • A health-making agency operates in the margins of governmental self-care discourse. [ABSTRACT FROM AUTHOR]

For more than two decades, international healthcare crises and ensuing political debates have led to increasing professional governance and regulatory policy reform. Governance and policy reforms, commonly representing a shift from embodied trust in professionals to state enforceable trust, have challenged professional power and self-regulatory privileges. However, controversy remains as to whether such policies do actually shift the balance of power and what the resulting effects of policy introduction would be. This paper explores the roll-out and operationalisation of revalidation as medical regulatory reform within a United Kingdom National Health Service hospital from 2012 to 2013, and its impact upon professional power. Revalidation policy was subject to the existing governance and management structures of the organisation, resulting in the formal policy process being shaped at the local level. This paper explores how the disorganised nature of the organisation hindered rather than facilitated robust processes of professional governance and regulation, fostering formalistic rather than genuine professional engagement with the policy process. Formalistic engagement seemingly assisted the medical profession in retaining self-regulatory privileges whilst maintaining professional power over the policy process. The paper concludes by challenging the concept of state enforceable trust and the theorisation that professional groups are effectively regulated and controlled by means of national and organisational objectives, such as revalidation. [ABSTRACT FROM AUTHOR]

‘Experiential knowledge’ is increasingly recognised as an important influence on reproductive decision-making. ‘Experiential knowledge of disability’ in particular is a significant resource within prenatal testing/screening contexts, enabling prospective parents to imagine and appraise future lives affected by disability. However, the concept of ‘experiential knowledge’ has been widely critiqued for its idiosyncrasy, its impermanence and consequently its perceived inferiority to (medical) knowledge. This paper explores some of these key critiques of experiential knowledge through an analysis of its constitution and uses in the context of reproductive decision-making. Seventeen UK-resident women with Spinal Muscular Atrophy (SMA), or with SMA in their family, took part in two in-depth interviews: one in 2007–9 and the other in 2013–4. By comparing and contrasting these women's accounts at two time points, this paper demonstrates the stark contrast between ‘lived experience’ of SMA (the visceral everyday realities of life with the condition) and the various way(s) this experience was transformed into, and presented as, ‘knowledge’ through the processes of making, and accounting, for reproductive decisions. The analysis highlights that multiple, distinct and sometimes competing experiential frameworks are used to conceptualise SMA across time and context. However, rather than evidence of its fallibility, this finding highlights that ‘knowledge’ is an inappropriate vessel with which to capture and transfer ‘experiential knowledge’. Rather, we need to consider how to value such insight in ways that harnesses its inherent strength without leaving it vulnerable to the epistemological critiques attracted by labelling it ‘knowledge’. [ABSTRACT FROM AUTHOR]

Efforts to diagnose Alzheimer's disease (AD) at earlier stages as a means to managing the risks of an ageing population, dominate scientific research and healthcare policy in the UK. It is anticipated that early diagnosis will maximise treatment options and enable patients to 'prepare for their future' in terms of care. Drawing on qualitative data gathered across an out-patient memory service and in-patient hospital in the UK, the purpose of this paper is to examine the ways in which the hopeful promissory claims of early diagnosis as it maintains the dominant biomedical model for managing AD, are negotiated by healthcare practitioners. Developing the analytical standpoint of the sociology of expectations, this paper demonstrates that early diagnosis has the potential to ‘close off’ hopeful promissory visions of the future in two ways. Firstly, it (re)produces the fearful anticipations of AD built around expectations concerning the ageing future ‘self’, and secondly it produces uncertainty in terms of the availability of care as material resource. Whilst practitioners account for the uncertainties and anxieties it produces for patients and their families, they also convey a sense of ambivalence concerning early diagnosis. This article captures the internal conflicts and contradictions inherent to practitioners' perspectives regarding the repercussions of early diagnosis and concludes by arguing that it effaces the uncertainties and anxieties that it produces in practice as it restricts the co-existence of narratives for making sense of memory loss beyond ‘loss of self’, and fails to recognise care as a viable alternative for managing AD. [ABSTRACT FROM AUTHOR]

Abstract Doctors' work and the changing, contested meanings of medical professionalism have long been a focus for sociological research. Much recent attention has focused on those doctors working at the interface between healthcare management and medical practice, with such ‘hybrid’ doctor-managers providing valuable analytical material for exploring changes in how medical professionalism is understood. In the United Kingdom, significant structural changes to medical regulation, most notably the introduction of revalidation in 2012, have created a new hybrid group, Responsible Officers (ROs), responsible for making periodic recommendations about the on-going fitness to practise medicine of all other doctors in their organisation. Using qualitative data collected in a 2015 survey with 374 respondents, 63% of ROs in the UK, this paper analyses the RO role. Our findings show ROs to be a distinct emergent group of hybrid professionals and as such demonstrate restructuring within UK medicine. Occupying a position where multiple agendas converge, ROs' work expands professional regulation into the organisational sphere in new ways, as well as creating new lines of continuous accountability between the wider profession and the General Medical Council as medical regulator. Our exploration of ROs' approaches to their work offers new insights into the on-going development of medical professionalism, pointing to the emergence of a distinctly regulatory hybrid professionalism shaped by co-existing professional, managerial and regulatory logics, in an era of strengthened governance and complex policy change. Highlights • Responsible Officers are a new governance elite group in the UK medical profession. • They work at the nexus of professional, managerial and regulatory spheres. • Differ from other doctor-managers due to accountability for medical performance. • Organisational context shapes experiences of this new role. • Regulatory reform has engendered a new form of hybrid professionalism. [ABSTRACT FROM AUTHOR]

In June 2011 the BBC Lab UK carried out a web-based survey on the causes of mental distress. The ‘Stress Test’ was launched on ‘All in the Mind’ a BBC Radio 4 programme and the test’s URL was publicised on radio and TV broadcasts, and made available via BBC web pages and social media. Given the large amount of data created, over 32,800 participants, with corresponding diagnosis, demographic and socioeconomic characteristics; the dataset are potentially an important source of data for population based research on depression and anxiety. However, as respondents self-selected to participate in the online survey, the survey may comprise a non-random sample. It may be only individuals that listen to BBC Radio 4 and/or use their website that participated in the survey. In this instance using the Stress Test data for wider population based research may create sample selection bias. Focusing on the depression component of the Stress Test, this paper presents an easy-to-use method, the Two Step Probit Selection Model, to detect and statistically correct selection bias in the Stress Test. Using a Two Step Probit Selection Model; this paper did not find a statistically significant selection on unobserved factors for participants of the Stress Test. That is, survey participants who accessed and completed an online survey are not systematically different from non-participants on the variables of substantive interest. [ABSTRACT FROM AUTHOR]

Twenty academic psychologists and neuroscientists, with an interest in autism and based within the United Kingdom, were interviewed between 2012 and 2013 on a variety of topics related to the condition. Within these qualitative interviews researchers often argued that there had been a ‘turn to infancy’ since the beginning of the 21st century with focus moving away from the high functioning adolescent and towards the pre-diagnostic infant deemed to be ‘at risk’ of autism. The archetypal research of this type is the ‘infant sibs’ study whereby infants with an elder sibling already diagnosed with autism are subjected to a range of tests, the results of which are examined only once it becomes apparent whether that infant has autism. It is claimed in this paper that the turn to infancy has been facilitated by two phenomena; the autism epidemic of the 1990s and the emergence of various methodological techniques, largely although not exclusively based within neuroscience, which seek to examine social disorder in the absence of comprehension or engagement on the part of the participant: these are experiments done to participants rather than with them. Interviewees claimed that these novel methods allowed researchers to see a ‘real’ autism that lay ‘behind’ methodology. That claim is disputed here and instead it is argued that these emerging methodologies other various phenomena, reorienting the social abnormality believed typical of autism away from language and meaning and towards the body. The paper concludes by suggesting that an attempt to draw comparisons between the symptoms of autism in infant populations and adults with the condition inevitably leads to a somaticisation of autism. [ABSTRACT FROM AUTHOR]

The need to focus on patient safety and improve the quality and consistency of medical care in acute hospital settings has been highlighted in a number of UK and international reports. When patients on a hospital ward become acutely unwell there is often a window of opportunity for staff, patients and relatives to contribute to the ‘rescue’ process by intervening in the trajectory of clinical deterioration. This paper explores the social and institutional processes associated with the practice of rescue, and implications for the implementation and effectiveness of rapid response systems (RRSs) within acute health care. An ethnographic case study was conducted in 2009 in two UK hospitals (focussing on the medical directorates in each organisation). Data collection involved 180 h of observation, 35 staff interviews (doctors, nurses, health care assistants and managers) and documentary review. Analysis was informed by Bourdieu's logic of practice and his relational concept of the ‘field’ of the general medical ward. Three themes illustrated the nature of rescue work within the field and collective rules which guided associated occupational distinction practices: (1) the ‘dirty work’ of vital sign recording and its distinction from diagnostic (higher order) interpretive work; (2) the moral order of legitimacy claims for additional help; and (3) professional deference and the selective managerial control of rescue work. The discourse of rescue provided a means of exercising greater control over clinical uncertainty. The acquisition of ‘rescue capital’ enabled the social positioning of health care assistants, nurses and doctors, and shaped use of the RRS on the wards. Boundary work, professional legitimation and jurisdictional claims defined the social practice of rescue, as clinical staff had to balance safety, professional and organisational concerns within the field. This paper offers a nuanced understanding of patient safety on the front-line, challenging notions of the ‘quick fix’ safety solution. [ABSTRACT FROM AUTHOR]

Governments around the world seek to design policies that enhance the innovative capacity of public service. Hence, identifying the underlying meanings attributed to innovation concepts in public policies is critical, as these very understandings inform not only the policy discourses, but also the overall institutional landscape regulating innovation activities. This paper examines such fundamental definitional aspects in the specific context of the National Health Service in England. For this purpose, it traces the evolution of the innovation concept in policy discourse based on the analysis of 21 key policy documents published or commissioned by the English Department of Health between 1948 and 2015. Systematic analysis of these texts reveals that policymakers’ conception of healthcare innovation broadened considerably over time. English health innovation policy initially focused on basic biomedical research. Subsequently, it entered a transitional period, zeroing in on science- and technology-based innovation. Finally, this focus gradually shifted to a broader conception of innovation translating into health, economic, and service design benefits. [ABSTRACT FROM AUTHOR]

Abstract: The expressivist objection to prenatal testing is acknowledged as a significant critique of prenatal testing practices most commonly advanced by disability rights supporters. Such writers argue that prenatal testing and selective termination practices are objectionable as they express disvalue not only of the foetus being tested, but also of disabled people as a whole, by focusing exclusively on the disabling trait. While the objection has been widely critiqued on the basis of its theoretical incoherence, this paper highlights the way in which it, nevertheless, is a significant mediator in decisions around the use of reproductive genetic technologies. By drawing on 41 in-depth qualitative interviews (drawn from a sample of 61) conducted in the UK between 2007 and 2009 with families and individuals living with a genetic disease, Spinal Muscular Atrophy (SMA), this paper highlights the ways in which expressivist objections feature prominently in the reproductive decisions of families living with SMA and the significant emotional burden they represent. While the literature on the expressivist objection has focused on the reproductive decisions of those undergoing prenatal testing for a condition of which they have little (or no) prior knowledge, the context of intimate familial relationships and extensive experience with the tested-for condition fundamentally alters the nature and impact of expressivist objections within families living with an inheritable condition. By focussing on the reproductive decisions of families living with SMA and their strategic management of the expressivist objection, this paper will address the call, made primarily by disability rights supporters, for ‘experientially based’ (as opposed to medical) information about the tested-for disability to be made available to would-be parents considering selective termination. It will be argued that parents' experiential knowledge of the tested-for disability can, in fact, amplify expressivist objections to prenatal testing, and thus paradoxically constrain, rather than facilitate, reproductive decisions. [Copyright &y& Elsevier]

Abstract: Sociological work that has engaged with the issue of patient involvement in health care suggests it needs to be recognised that decision-making is not simply an individual cognitive act contained in a single consultation, but a process that is distributed across multiple encounters in relation to a range of agents and non-human actors. Drawing on such conceptualisations of decision-making, and based on semi-structured interviews with 24 General Practitioners (GPs) in the United Kingdom about the prescription of statins for the primary prevention of cardiovascular disease, this paper explores the preemptive work that GPs perform when attempting to achieve patient involvement in healthcare decisions. The paper identifies a set of repertoires through which they evaluate and coordinate often contradictory forms of knowledge, transforming them into information that they think is relevant to patients, and which will potentially facilitate meaningful involvement in healthcare decisions. The study concludes by suggesting that such fluid and context sensitive practices are a necessary strategy for navigating complex health environments, which can be justified and underpinned by a relational model of autonomy. However, work needs to be done to explore how such judgments can be calibrated to mesh with the decision-making preferences of patients and what new approaches and standards for practice this would require. [Copyright &y& Elsevier]

In spite of their widespread use in policy making in the UK and elsewhere, there is a relatively sparse literature specifically devoted to policy pilots. Recent research on policy piloting has focused on the role of pilots in making policy work in accordance with national agendas. Taking this as a point of departure, the present paper develops the notion of pilots doing policy work. It does this by situating piloting within established theories of policy formulation and implementation, and illustrating using an empirical case. Our case is drawn from a qualitative policy ethnography of a local government pilot programme aiming to extend access to healthcare services. Our case explores the collective entrepreneurship of regional policy makers together with local pilot volunteers. We argue that pilots work to mobilise and manage the ambiguity and conflict associated with particular policy goals, and in their structure and design, shape action towards particular outcomes. We conclude with a discussion of the generative but managed role which piloting affords to local implementers. [ABSTRACT FROM AUTHOR]

The UK National Institute for Clinical Excellence (NICE) Clinical Guidelines recommend routine prescription of antidepressants for moderate to severe depression. While many patients accept a prescription, one in three do not complete treatment. We carried out a meta-ethnography of published qualitative papers since 1990 whose focus is patients' experience of antidepressant use for depression, in order to understand barriers and facilitators to concordance and inform a larger qualitative study investigating antidepressant use over time. A systematic search of five databases was carried out, supported by hand searches of key journals, writing to first authors and examining reference lists. After piloting three critical appraisal tools, a modified version of the CASP (Critical Appraisal Skills Programme) checklist was used to appraise potentially relevant and qualitative papers. We carried out a synthesis using techniques of meta-ethnography involving translation and re-interpretation. Sixteen papers were included in the meta-ethnography. The papers fall into two related groups: (1) Papers whose focus is the decision-making relationship and the ways patients manage their use of antidepressants, and (2) Papers whose focus is antidepressants' effect on self-concept, ideas of stigma and its management. We found that patients' experience of antidepressants is characterised by the decision-making process and the meaning-making process, conceptualised here as the ‘medication career’ and ‘moral career’. Our synthesis indicates ways in which general practitioners (GPs) can facilitate concordant relationships with patients regarding antidepressant use. First, GPs can enhance the potential for shared decision-making by reviewing patients' changing preferences for involvement in decision-making regularly throughout the patient's ‘medication career’. Second, if GPs familiarise themselves with the competing demands that patients may experience at each decision-making juncture, they will be better placed to explore their patients' preferences and concerns – i.e. their ‘moral career’ of medication use. This may lead to valuable discussion of what taking antidepressants means for patients' sense of self and how their treatment decisions may be influenced by a felt sense of stigma. [Copyright &y& Elsevier]

Traditional acupuncturists' quest for external legitimacy in Britain involves the standardization of their knowledge bases through the development of training schools and syllabi, formal educational structures, and, since the 1990s, the teaching of undergraduate courses within (or validated by) Higher Education Institutions (HEIs), a process which entails biomedical alignment of the curriculum. However, as holistic discourses were commonly used as a rhetorical strategy by CAM practitioners to distance themselves from biomedicine and as a source of public appeal, this ‘mainstreaming’ process evoked practitioners' concerns that their holistic claims are being compromised. An additional challenge is being posed by a group of academics and scientists in Britain who launched an attack on CAM courses taught in HEIs, accusing them of being ‘unscientific’ and ‘non-academic’ in nature. This paper explores the negotiation of all these challenges during the formalization of traditional acupuncture education in Britain, with a particular focus on the role of HEIs. The in-depth qualitative investigation draws on several data sets: participant observation in a university validated acupuncture course; in-depth interviews; and documentary analysis. The findings show how, as part of the formalization process, acupuncturists in Britain (re)negotiate their holistic, anti-reductionist discourses and claims in relation to contemporary societal, political and cultural forces. Moreover, the teaching and validation of acupuncture courses by HEIs may contribute to broadening acupuncturists' ‘holistic awareness’ of societal and cultural influences on individuals' and communities' ill-health. This investigation emphasises the dynamic and context-specific (rather than fixed and essentialized) nature of acupuncture practice and knowledge. [ABSTRACT FROM AUTHOR]

Abstract: There has much debate about the extent to which professional discretion has been challenged by recent organisational changes such as through the new forms of governance associated with the introduction of the principles of the New Public Management (NPM) into health systems and other public sector services. What appears to be missing from these debates is a detailed analysis of the concept of professional discretion itself. This paper attempts to fill this gap by delineating the key concepts of professional discretion evident in the literature and exploring their significance in an empirical study of the influence of the 2004 new general medical services contract (nGMS) and the introduction of the Quality and Outcomes Framework (QOF), a prescriptive pay-for-performance system designed to standardise the quality of care provision in general medical practice in the United Kingdom. The study adopted a longitudinal design using semi-structured interviews with general practitioners (GPs, N = 62) working in the English National Health Service (NHS) between 2007 and 2009. A multi-dimensional conception of discretion was used to explore how GP discretion might have been influenced by contractual changes and in particular, QOF. The findings suggest that through a complex interplay of factors, a post-QOF reduction in GP discretion was identifiable, highlighting different potential sources of constraint such as in the social, organisational and economic dimensions of discretion. The evidence also suggested the emergence of a new form of organisational medical professionalism within general practice characterised by standardisation, bureaucracy and performance management. [Copyright &y& Elsevier]

Abstract: Within policy and practice there is an increasing interest in the care of frail elders. However understanding of the experience and challenges of living and dying with frailty in older age is currently undeveloped. Frailty is often used as a synonym for the increasing infirmities that accompany ageing and the slow dwindling dying trajectory of many elders. However, there is little empirical work on the experience of being frail to inform social gerontological perspectives and welfare provision. Through analysis of repeated in-depth interviews over 17 months (2006–2008) with 17 frail elders living at home in the U.K., key factors that shape elders’ experience of being frail emerged. The study argues that the visible markers of functional limitations and the increasing social losses of old age bring finitude to the fore. To retain anchorage in this state of imbalance, frail elders work actively to develop and sustain connections to their physical environment, routines and social networks. This experience can be conceptualised as persistent liminality; a state of imbalance “betwixt and between” active living and clinically recognised dying. This paper highlights the precarious and often protracted dying trajectory of frail older people. Whilst it could be argued that developing into death in older age is part of a normal and successful course after a life long-lived, recognition of and support for older people deemed frail is lacking. Frail elders find themselves living in the margin between the Third and Fourth Age with little recognition of or support for the work of living and dying over time. This experience of frailty contests dominant cultural and welfare practices and policy frameworks that operate in binary modes: social or health; independent or dependent; living or dying. [Copyright &y& Elsevier]

Abstract: Young men are often considered to be at particular risk of suicide, but such claims are partial and potentially misleading. Drawing on official statistics and an innovative, qualitatively driven, mixed method sociological autopsy of individual suicides, the authors of this paper argue that the vulnerability of ‘young’ men to suicide is often exaggerated and that insufficient attention is paid to the diverse social circumstances of suicidal men and women across the life course. Detailed analysis of 100 case files selected from a single coroner''s office in the UK reveals that patterns of suicide can be seen to map on to conventional features of a socially structured life course, with young people in crisis, mid-life gendered patterns of work and family and older people in decline. Particular attention is drawn to suicide among those in mid-life and to the role of the social bond, especially in the form of attachment. Relationship breakdown is considered in some detail because it is central to understanding the demography of suicide and the significance of social bonds. [Copyright &y& Elsevier]

The aim of this paper is twofold: firstly to investigate whether the association between childhood and adult psychosocial adjustment can be explained by socio-economic adversity experienced during childhood, and secondly to explore the role of family socio-economic disadvantage and psychological development in explaining adult social inequality in psychological well-being. A developmental-contextual perspective is adopted to analyse the pathways linking childhood experiences to adult functioning in a changing socio-historical context. The study draws on longitudinal data collected for two cohorts of about 30,000 individuals born in Great Britain 12 years apart. Structural equation modelling is used to assess the long-term influence of socio-economic adversity on psychosocial adjustment, and to compare different explanatory models of health inequalities. The results reject a simple selection or social causation argument, suggesting that both dynamics operate in life course development. The effects of social risk cumulate throughout the life course, influencing both behaviour adjustment during childhood and adult psychosocial functioning. It is concluded that the explanation of health differences in adult life must account for the reciprocal interaction between individual behaviour and social circumstances. [Copyright &y& Elsevier]