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The UK National Health Service (NHS) is changing. Consecutive UK industrial strategies have supported the shift from an NHS that provides free‐at‐point‐of‐delivery healthcare to one that also facilitates research. Said to promote healthcare's triple aim of 'better health, better healthcare, and lower cost' (Wachter, 2016, 3), the digitisation of patient records is a core part in opening routine aspects of the health system to potential research. In this paper, we thematically analyse 11 policy documents and ask, how does the NHS discuss its decision to digitise patient records and what are the implications of such practices on the citizen? We document how (1) digitisation is presented as a collective endeavour for patients and NHS professionals, offering new possibilities for patients to participate in their own health and that of the population through research and, (2) digitisation contributes to the building of an efficient health system. Through this analysis we reflect on how discussions of digitisation present uncritically the potential of Electronic Health Records and big data analytics to improve care and generate wealth through research, and reconfigure patienthood, by placing research participation as a routine part of accessing NHS healthcare. [ABSTRACT FROM AUTHOR]

The National Institute for Health Research (NIHR) aims to improve national 'health and wealth' by providing infrastructural support to enable clinical research in National Health Service settings in England and Wales. Cognisant of the consequences of studies' failure to achieve required numbers of participants, it also actively campaigns to promote patient awareness of research, and willingness to participate in trials. In this paper, we analyse recent NIHR campaigns and policies designed to encourage patients to participate in clinical research to interrogate how they are implicated in the national bioeconomy. In doing so we expand the notion of 'clinical labour' to include the work of patient recruitment and highlight an emergent obligation on patients to contribute to research processes. Whereas once patient knowledge and experience may have been devalued, here we draw on the concept of 'assetisation' (Birch 2012) to explore the emergent relationship between healthcare system and patient as research participant. We consider how patients' contribution goes beyond the provision of standardised objects of valuation so that patients themselves may be perceived as assets to, not only recipients of, the national healthcare system. [ABSTRACT FROM AUTHOR]

Background: Stroke, like many long-term conditions, tends to be managed in isolation of its associated risk factors and multimorbidity. With increasing access to clinical and research data there is the potential to combine data from a variety of sources to inform interventions to improve healthcare. A ‘Learning Health System’ (LHS) is an innovative model of care which transforms integrated data into knowledge to improve healthcare. The objective of this study is to develop a process of engaging stakeholders in the use of clinical and research data to co-produce potential solutions, informed by a LHS, to improve long-term care for stroke survivors with multimorbidity. Methods: We used a stakeholder engagement study design informed by co-production principles to engage stakeholders, including service users, carers, general practitioners and other health and social care professionals, service managers, commissioners of services, policy makers, third sector representatives and researchers. Over a 10 month period we used a range of methods including stakeholder group meetings, focus groups, nominal group techniques (priority setting and consensus building) and interviews. Qualitative data were recorded, transcribed and analysed thematically. Results: 37 participants took part in the study. The concept of how data might drive intervention development was difficult to convey and understand. The engagement process led to four priority areas for needs for data and information being identified by stakeholders: 1) improving continuity of care; 2) improving management of mental health consequences; 3) better access to health and social care; and 4) targeting multiple risk factors. These priorities informed preliminary design interventions. The final choice of intervention was agreed by consensus, informed by consideration of the gap in evidence and local service provision, and availability of robust data. This shaped a co-produced decision support tool to improve secondary prevention after stroke for further development. Conclusions: Stakeholder engagement to identify data-driven solutions is feasible but requires resources. While a number of potential interventions were identified, the final choice rested not just on stakeholder priorities but also on data availability. Further work is required to evaluate the impact and implementation of data-driven interventions for long-term stroke survivors. [ABSTRACT FROM AUTHOR]

Background: Internationally, there has been increasing focus on creating health research systems. This article aims to investigate the challenges of implementing apparently simple strategies to support the development of a health research system. We focus on a case study of an English National Health Service Hospital Trust that sought to implement the national recommendation that health organisations should introduce a statement about research on all patient admission letters.Methods: We apply core concepts from complexity theory to the case study and undertake a documentary analysis of the email dialogue between staff involved in implementing this initiative.Results: The process of implementing a research statement in patient admission letters in one clinical service took 1 year and 21 days. The length of time needed was influenced firstly by adaptive self-organisation, underpinned by competing interests. Secondly, it was influenced by the relationship between systems, rather than simply being a product of issues within those systems. The relationship between the health system and the research system was weaker than might have been expected. Responsibilities were unclear, leading to confusion and delayed action.Conclusions: Conventional ways of thinking about organisations suggest that change happens when leaders and managers change the strategic vision, structure or procedures in an organisation and then persuade others to rationally implement the strategy. However, health research systems are complex adaptive systems characterised by high levels of unpredictability due to self-organisation and systemic interactions, which give rise to 'emergent' properties. We argue for the need to study how micro-processes of organisational dynamics may give rise to macro patterns of behaviour and strategic organisational direction and for the use of systems approaches to investigate the emergent properties of health research systems. [ABSTRACT FROM AUTHOR]

Background: Implementing major system change in healthcare is not well understood. This gap may be addressed by analysing change in terms of interrelated components identified in the implementation literature, including decision to change, intervention selection, implementation approaches, implementation outcomes, and intervention outcomes.Methods: We conducted a qualitative study of two cases of major system change: the centralisation of acute stroke services in Manchester and London, which were associated with significantly different implementation outcomes (fidelity to referral pathway) and intervention outcomes (provision of evidence-based care, patient mortality). We interviewed stakeholders at national, pan-regional, and service-levels (n = 125) and analysed 653 documents. Using a framework developed for this study from the implementation science literature, we examined factors influencing implementation approaches; how these approaches interacted with the models selected to influence implementation outcomes; and their relationship to intervention outcomes.Results: London and Manchester's differing implementation outcomes were influenced by the different service models selected and implementation approaches used. Fidelity to the referral pathway was higher in London, where a 'simpler', more inclusive model was used, implemented with a 'big bang' launch and 'hands-on' facilitation by stroke clinical networks. In contrast, a phased approach of a more complex pathway was used in Manchester, and the network acted more as a platform to share learning. Service development occurred more uniformly in London, where service specifications were linked to financial incentives, and achieving standards was a condition of service launch, in contrast to Manchester. 'Hands-on' network facilitation, in the form of dedicated project management support, contributed to achievement of these standards in London; such facilitation processes were less evident in Manchester.Conclusions: Using acute stroke service centralisation in London and Manchester as an example, interaction between model selected and implementation approaches significantly influenced fidelity to the model. The contrasting implementation outcomes may have affected differences in provision of evidence-based care and patient mortality. The framework used in this analysis may support planning and evaluating major system changes, but would benefit from application in different healthcare contexts. [ABSTRACT FROM AUTHOR]

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

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

Background The need for stroke care is escalating with an ageing population, yet methods to estimate the delivery of effective care across countries are not standardised or robust. Associations between quality and intensity of care and stroke outcomes are often assumed but have not been clearly demonstrated. Objective To examine variations in acute care processes across six European populations and investigate associations between the delivery of care and survival. Methods Data were obtained from population-based stroke registers of six centres in France, Lithuania, UK, Spain, Poland and Italy between 2004 and 2006 with follow-up for 1 year. Variations in the delivery of care (stroke unit, multidisciplinary team and acute drug treatments) were analysed adjusting for case mix and sociodemographic factors using logistic regression methods. Unadjusted and adjusted survival probabilities were estimated and stratified by levels of Organised Care Index. Results Of 1918 patients with a first-ever stroke registered, 30.7% spent more than 50% of their hospital stay in a stroke unit (13.9-65.4%) among centres with a stroke unit available. The percentage of patients assessed by a stroke physician varied between 7.1% and 96.6%. There were significant variations after adjustment for confounders, in the organisation of care across populations. Significantly higher probabilities of survival (p<0.01) were associated with increased organisational care. Conclusions This European study demonstrated associations between delivery of care and stroke outcomes. The implementation of evidence-based interventions is suboptimal and understanding better ways to implement these interventions in different healthcare settings should be a priority for health systems. [ABSTRACT FROM AUTHOR]

Background: Studies examining the impact of organised acute stroke care interventions on survival in subgroups of stroke patients remain limited. Aims: This study examined the effects of a range of evidence-based interventions of acute stroke care on one year survival post-stroke and determined the size of the effect across different socio-demographic and clinical subgroups of patients. Methods: Data on 4026 patients with a first-ever stroke recruited to the population-based South London Stroke Register between 1995 and 2010 were used. In uni-variable analyses, one year cumulative survival rates in socio-demographic groups and by care received was determined. Survival functions were compared using Log-rank tests. Multivariable Cox models were used to test for interactions between components of care and age group, sex, ethnic group, social class, stroke subtype and level of consciousness. Results: 1949 (56.4%) patients were admitted to a stroke unit. Patients managed on a stroke unit, those with deficits receiving specific rehabilitation therapies and those with ischaemic stroke subtype receiving aspirin in the acute phase had better one year survival compared to those who did not receive these interventions. The greatest reduction in the hazards of death among patients treated on a stroke unit were in the youngest patients aged <65 years, (HR 0.39; 95% CI: 0.25–0.62), and those with reduced levels of consciousness, GCS <9, (HR: 0.44; CI: 0.33–0.58). Conclusions: There was evidence of better one year survival in patients receiving specific acute interventions after stroke with a significantly greater effect in stroke subgroups, suggesting the possibility of re-organising stroke services to ensure that the most appropriate care is made accessible to patients likely to derive the most benefits from such interventions. [ABSTRACT FROM AUTHOR]

Background: Significant changes in provision of clinical care within the English National Health Service (NHS) have been discussed in recent years, with proposals to concentrate specialist services in fewer centres. Stroke is a major public health issue, accounting for over 10% of deaths in England and Wales, and much disability among survivors. Variations have been highlighted in stroke care, with many patients not receiving evidence-based care. To address these concerns, stroke services in London and Greater Manchester were reorganised, although different models were implemented. This study will analyse processes involved in making significant changes to stroke care services over a short time period, and the factors influencing these processes. We will examine whether the changes have delivered improvements in quality of care and patient outcomes; and, in light of this, whether the significant extra financial investment represented good value for money. Methods/design: This study brings together quantitative data on 'what works and at what cost?' with qualitative data on 'understanding implementation and sustainability' to understand major system change in two large conurbations in England. Data on processes of care and their outcomes (e.g. morbidity, mortality, and cost) will be analysed to evidence services' performance before and after reconfiguration. The evaluation draws on theories related to the dissemination and sustainability of innovations and the 'social matrix' underlying processes of innovation. We will conduct a series of case studies based on stakeholder interviews and documentary analysis. These will identify drivers for change, how the reconfigurations were governed, developed, and implemented, and how they influenced service quality. Discussion: The research faces challenges due to: the different timings of the reconfigurations; the retrospective nature of the evaluation; and the current organisational turbulence in the English NHS. However, these issues reflect the realities of major systems change and its evaluation. The methods applied in the study have been selected to account for and learn from these complexities, and will provide useful lessons for future reconfigurations, both in stroke care and other specialties. [ABSTRACT FROM AUTHOR]

Background. Evidence-based stroke care should be available to all patients. However, evidence exists of inequalities according to age. This study compared access to care for younger adults to that for over 65s. Methods. Using population-based data from 4229 patients with first-ever stroke between 1995 and 2010, associations between age and 21 care indicators were investigated using multivariable logistic regression. Results. Age was not associated with stroke unit admission for ischaemic stroke (P = 0.666). Younger PICH patients were least likely to be admitted to stroke units (P = 0.001), instead treated on neurosurgical or ICU wards. Younger age was also associated with admission to neurosurgery or ICU after SAH (P = 0.006), increased occupational or physiotherapy at 1 year (P = 0.043), and contact with a GP 3 months after stroke (P < 0.001). Conclusion. Younger patients have equal or greater access to evidence-based care. However, there is a need to ensure that services meet the needs of this group. [ABSTRACT FROM AUTHOR]

The provision of healthcare services has been shown to differ by social characteristics such as gender, age and social status. The processes by which such differences arise are unclear. We report findings from a qualitative interview study with stroke service providers undertaken during an investigation of inequalities in stroke care. We interviewed 41 professionals from hospital and community settings in south London. Participants’ accounts are used to explore how it is that patients’ trajectories of care might not follow evidence-based guidelines, focusing on stroke unit admission, provision of hospital rehabilitation therapies and community health and social services. Categories of patients who might not receive best care were people who were cognitively impaired, those regarded as having ‘complex problems’, those with communication problems and younger people. Additionally, the local availability of services was thought to affect individuals’ chances of receiving particular components of care. Although professionals spoke of certain types of patients as ‘falling through the net’ (of services), their accounts suggest that they channel patients through services according to an implicit template of the individual suited to the service. Those who do not fit the service as currently resourced may have reduced access to specific components of care. If inequalities in access to care are to be addressed we require a better understanding of how professionals’ decision-making processes test the fit between service users and the implicit template of ‘suitable’ patient or client. [ABSTRACT FROM AUTHOR]

Abstract Stroke is the third most common cause of death in the UK and a major cause of adult disability. Stroke services have long been criticised for being deficient and there is evidence that some aspects of care provision vary across different population groups. While there is information about the patterns of service provision, questions remain about processes which might underlie these variations. The present paper sought to assess how well the processes which might lead to inequity in the delivery and uptake of stroke services are currently understood by reviewing the qualitative literature in the area. The review was carried out by systematically searching online literature databases, using keyword and bibliographical searches, within a particular time frame. In total, 55 articles were reviewed, including studies related to primary and secondary clinical care, as well as social care. Articles focused on both professionals’ and patients’ perspectives. The review reports the cultural factors and processes which have been identified as possible causes of barriers to professionals’ delivering stroke services, as well as issues which influence patients’ uptake of services. Issues identified in the literature were categorised into four broad thematic areas: conceptualisations of stroke illness and ageing, socio-economic factors, resource allocation and information provision. These themes are then revisited through the hypothesis that the concept of social and personal identity could cast new light on our understanding of how inequity in stroke care provision might arise. It is argued that the ways in which professionals and patients view themselves and each other influences their interaction, and in turn, the delivery and demand for services. Finally, the authors suggest areas where further research is warranted. [ABSTRACT FROM AUTHOR]

The poor health status of citizens in post-Soviet states has been reported but few studies have investigated the illness experiences of people in those countries. This paper reports findings from an interview study conducted with stroke patients in Riga, Latvia, who were part of a cohort recruited over 1 year for a European study comparing the provision of care, outcomes and resource use. The interview study aimed to elicit stroke patients’ own perceptions of the impact of stroke 1 year after the event. Adopting a phenomenological perspective we illustrate how the particular social setting shapes stroke as an illness, its influences on access to health care and on consideration of the impact of stroke. We argue that for stroke survivors and their relatives in post-Soviet Latvia this disorder acquires a meaning that transcends the individual biography and signifies an upheaval of social life in general. The meanings attributed to stroke by interviewees are developed in the context of the momentous recent historical events which participants lived through. In this sense, stroke has become an idiom of a disruption in social biography rather than individual biography alone. Most participants were pensioners and their main concern was their own poverty. Some complained of their inability to meet their basic needs, much less pay for on-going medication and therapy. Only one person was ‘severely disabled’, using a standard neurological definition, but about half of those interviewed regarded the stroke as a sign foretelling their own death. Although this generation had expected to be cared for in their older age under the Soviet regime, the much longed for Latvian independence was seen to have brought unexpected hardships for those who were old and sick. [Copyright &y& Elsevier]

The article discusses a study conducted by Stephen Morris and colleagues which aims to assess the effect of consolidating services for acute stroke in two England cities on patient mortality and length of hospital stay. Topics discussed include the main results of the study, what the research adds to previous studies on centralized model of care, and the methodology of the study. A table showing absolute difference in risk adjusted mortality and length of hospital stay is presented.

The latest evidence on socioeconomic status and stroke shows that stroke not only disproportionately affects low-income and middle-income countries, but also socioeconomically deprived populations within high-income countries. These disparities are reflected not only in risk of stroke but also in short-term and long-term outcomes after stroke. Increased average levels of conventional risk factors (eg, hypertension, hyperlipidaemia, excessive alcohol intake, smoking, obesity, and sedentary lifestyle) in populations with low socioeconomic status account for about half of these effects. In many countries, evidence shows that people with lower socioeconomic status are less likely to receive good-quality acute hospital and rehabilitation care than people with higher socioeconomic status. For clinical practice, better implementation of well established treatments, effective management of risk factors, and equity of access to high-quality acute stroke care and rehabilitation will probably reduce inequality substantially. Overcoming barriers and adapting evidence-based interventions to different countries and health-care settings remains a research priority. [ABSTRACT FROM AUTHOR]