Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals.

BACKGROUND: Poorly coordinated care can have major impacts on patients and families affected by rare conditions, with negative physical health, psychosocial and financial consequences. This study aimed to understand how care is coordinated for rare diseases in the United Kingdom. METHODS: We undertook a national survey in the UK involving 760 adults affected by rare diseases, 446 parents/carers of people affected by rare diseases, and 251 healthcare professionals who care for people affected by rare diseases. RESULTS: Findings suggested that a wide range of patients, parents and carers do not have coordinated care. For example, few participants reported having a care coordinator (12% patients, 14% parents/carers), attending a specialist centre (32% patients, 33% parents/carers) or having a care plan (10% patients, 44% parents/carers). A very small number of patients (2%) and parents/carers (5%) had access to all three-a care coordinator, specialist centre and care plan. Fifty four percent of patients and 33% of parents/carers reported access to none of these. On the other hand, a higher proportion of healthcare professionals reported that families with rare conditions had access to care coordinators (35%), specialist centres (60%) and care plans (40%). CONCLUSIONS: Care for families with rare conditions is generally not well coordinated in the UK, with findings indicating limited access to care coordinators, specialist centres and care plans. Better understanding of these issues can inform how care coordination might be improved and embrace the needs and preferences of patients and families affected by rare conditions.

The impact of COVID-19 on patient engagement with primary healthcare: lessons from the saudi primary care setting.

BACKGROUND: There have been significant achievements in controlling COVID-19 in Saudi Arabia (SA), but as in most healthcare settings worldwide, health services have been seriously disrupted. Also, with pandemic control measures such as lockdowns and curfews, and innovations such as digital health services, the delivery of primary healthcare (PHC) services has dramatically changed. However, little is known about patients' experiences of PHCs during the pandemic, their views on the pandemic-related interventions in SA, and patient views on impact on their medical care. METHODS: Qualitative semi-structured online interviews were conducted for twenty-four Saudi patients across SA aged 18 and above who were diverse in terms of age, gender, education and health status. Data were analysed using thematic analysis yielding four major themes as an impact of COVID-19 on patient engagement with PHCs. RESULTS: The COVID-19 pandemic has had profound mixed impacts on patient engagement with PHC in SA. Fear of infection or of breaking lockdown rules has negatively impacted the utilisation of PHCs but positively changed patients' attitudes towards seeking medical help for self-limiting conditions. The pandemic has also negatively impacted routine preventive care at PHCs, especially for patients with long-term health conditions. The mandatory use of some digital health services in SA that existed pre-pandemic has provided patients with a perception of better care during the pandemic. Yet, a lack of awareness of optional digital health services, such as virtual clinics, hindered optimal use. Despite pandemic-related disruption of patient engagement with PHCs, the reduced waiting time in PHC centres and healthcare providers' communication and empathy during the pandemic contributed to patients' perceptions of better care compared to pre-pandemic. However, patients living outside the main cities in SA perceived care quality as less good during the pandemic compared to PHCs in the main cities in SA. CONCLUSION: The lessons learned from patients' experiences and views of PHCs during the pandemic were beneficial in promoting patient engagement with PHCs. The digital health services mandated in response to the pandemic have accelerated digital health innovation in SA and allowed patients to recognise the benefits of digital health. This has huge potential for increasing continuous patient engagement with PHCs. Yet, patients' experiences of digital health services during the pandemic are essential for informing appropriate implementation and utilisation of e-health services. Patients' positive experiences of PHCs during the pandemic, such as the reduction in waiting times and the perception of improved healthcare providers' professionalism, communication and empathy, can be built on to sustain engagement with PHC services. These findings might have significance for clinicians and policymakers to support patient engagement with PHCs, particularly in healthcare systems like SA that struggle with the overuse of emergency departments (EDs) for PHC-treatable conditions.

Temporal structures that determine consistency and quality of care: a case study in hyperacute stroke services.

BACKGROUND: Temporal structuring is determined by practices and social norms and affects the quality and timing of care. In this case study of hyperacute stroke wards which provide initial stroke investigation, treatment and care, we explored temporal structuring patterns to explain how these may affect quality of care. METHODS: This paper presents a thematic analysis of qualitative interviews with hyperacute stroke staff (n=76), non-participant observations (n=41, ~102 hours) and documentary analysis of the relevant service standards guidance. We used an inductive coding process to generate thematic findings around the concept of temporal structuring, with graphically illustrated examples. RESULTS: Five temporal structures influence what-happens-when: (1) clinical priorities and quality assurance metrics motivate rapid activity for the initial life-prolonging assessments and interventions; (2) static features of ward organisation such as rotas and ward rounds impact consistency of care, determining timing and quality of care for patients; (3) some services experimented with staff rotas to try to meet peaks in demand, sometimes unsuccessfully; (4) implicit social norms or heuristics about perceived necessity affected staff motivation to make changes or improvements to consistency of care, particularly around weekend work; and (5) after-effects such as bottlenecks or backlogs affect quality of care, which are hard to measure effectively to drive service improvement. CONCLUSIONS: Patients need temporally consistent high quality of care. Temporal consistency stems from the design of services, including staffing, targets and patient pathway design as well as cultural attitudes to working patterns. Improvements to consistency of care will be limited without changes to structures such as rotas and ward rounds, but also social norms around weekend work for certain professional groups.

Acquiring and developing healthcare leaders' political skills: an interview study with healthcare leaders.

BACKGROUND: Research suggests health and care leaders need to develop a distinct set of political skills in order to understand and manage the competing interests and agenda that characterise health and care services. AIM: To understand how healthcare leaders describe the acquisition and development of political skills with the aim of providing evidence for leadership development programme. METHODS: A qualitative interview study was carried out between 2018 and 2019 with 66 health and care leaders located within the English National Health Service. Qualitative data were subject to interpretative analysis and coding, with themes related to pre-existing literature on the methods of leadership skill development. RESULTS: The primary method of acquiring and developing political skill is through direct experience in leading and changing services. This is unstructured and incremental in nature with skill development increased through the accumulation of experience. Many participants described mentoring as an important source of political skill development, especially for reflecting on first-hand experiences, understanding the local environment and fine-tuning strategies. A number of participants describe formal learning opportunities as giving them permission to discuss political issues, and providing frameworks for conceptual understanding of organisational politics. Overall, no one approach appears to reflect the changing developmental needs of leaders. CONCLUSIONS: The study suggests that healthcare leaders' development of political skills and behaviours might be supported through an integrative approach that takes into account the evolving learning needs and opportunities at different career stages in the form of a maturation framework.

Navigating the micro-politics of major system change: The implementation of Sustainability Transformation Partnerships in the English health and care system.

OBJECTIVE: To investigate how health and care leaders navigate the micro-politics of major system change (MSC) as manifest in the formulation and implementation of Sustainability and Transformation Partnerships (STPs) in the English National Health Service (NHS). METHODS: A comparative qualitative case study of three STPs carried out between 2018-2021. Data collection comprised 72 semi-structured interviews with STP leaders and stakeholders; 49h of observations of STP executive meetings, management teams and thematic committees, and documentary sources. Interpretative analysis involved developing individual and cross case reports to understand the 'disagreements, 'people and interests' and the 'skills, behaviours and practice'. FINDINGS: Three linked political fault-lines underpinned the micro-politics of formulating and implementing STPs: differences in meaning and value, perceptions of winners and losers, and structural differences in power and influence. In managing these issues, STP leaders engaged in a range of complementary strategies to understand and reconcile meanings, appraise and manage risks and benefits, and to redress longstanding power imbalances, as well as those related to their own ambiguous position. CONCLUSION: Given the lack of formal authority and breadth of system change, navigating the micro-politics of MSC requires political skills in listening and engagement, strategic appraisal of the political landscape and effective negotiation and consensus-building.

Cost-Utility Analysis of Major System Change in Specialist Cancer Surgery in London, England, Using Linked Patient-Level Electronic Health Records and Difference-in-Differences Analysis.

BACKGROUND: Studies have shown that centralising surgical treatment for some cancers can improve patient outcomes, but there is limited evidence of the impact on costs or health-related quality of life. OBJECTIVES: We report the results of a cost-utility analysis of the RESPECT-21 study using difference-in-differences, which investigated the reconfiguration of specialist surgery services for four cancers in an area of London, compared to the Rest of England (ROE). METHODS: Electronic health records data were obtained from the National Cancer Registration and Analysis Service for patients diagnosed with one of the four cancers of interest between 2012 and 2017. The analysis for each tumour type used a short-term decision tree followed by a 10-year Markov model with 6-monthly cycles. Costs were calculated by applying National Health Service (NHS) Reference Costs to patient-level hospital resource use and supplemented with published data. Cancer-specific preference-based health-related quality-of-life values were obtained from the literature to calculate quality-adjusted life-years (QALYs). Total costs and QALYs were calculated before and after the reconfiguration, in the London Cancer (LC) area and in ROE, and probabilistic sensitivity analysis was performed to illustrate the uncertainty in the results. RESULTS: At a threshold of £30,000/QALY gained, LC reconfiguration of prostate cancer surgery services had a 79% probability of having been cost-effective compared to non-reconfigured services using difference-in-differences. The oesophago-gastric, bladder and renal reconfigurations had probabilities of 62%, 49% and 12%, respectively, of being cost-effective at the same threshold. Costs and QALYs per surgical patient increased over time for all cancers across both regions to varying degrees. Bladder cancer surgery had the smallest patient numbers and changes in costs, and QALYs were not significant. The largest improvement in outcomes was in renal cancer surgery in ROE, making the relative renal improvements in LC appear modest, and the probability of the LC reconfiguration having been cost-effective low. CONCLUSIONS: Prostate cancer reconfigurations had the highest probability of being cost-effective. It is not clear, however, whether the prostate results can be considered in isolation, given the reconfigurations occurred simultaneously with other system changes, and healthcare delivery in the NHS is highly networked and collaborative. Routine collection of quality-of-life measures such as the EQ-5D-5L would have improved the analysis.

Loss associated with subtractive health service change: The case of specialist cancer centralization in England.

OBJECTIVE: Major system change can be stressful for staff involved and can result in 'subtractive change' - that is, when a part of the work environment is removed or ceases to exist. Little is known about the response to loss of activity resulting from such changes. Our aim was to understand perceptions of loss in response to centralization of cancer services in England, where 12 sites offering specialist surgery were reduced to four, and to understand the impact of leadership and management on enabling or hampering coping strategies associated with that loss. METHODS: We analysed 115 interviews with clinical, nursing and managerial staff from oesophago-gastric, prostate/bladder and renal cancer services in London and West Essex. In addition, we used 134 hours of observational data and analysis from over 100 documents to contextualize and to interpret the interview data. We performed a thematic analysis drawing on stress-coping theory and organizational change. RESULTS: Staff perceived that, during centralization, sites were devalued as the sites lost surgical activity, skills and experienced teams. Staff members believed that there were long-term implications for this loss, such as in retaining high-calibre staff, attracting trainees and maintaining autonomy. Emotional repercussions for staff included perceived loss of status and motivation. To mitigate these losses, leaders in the centralization process put in place some instrumental measures, such as joint contracting, surgical skill development opportunities and trainee rotation. However, these measures were undermined by patchy implementation and negative impacts on some individuals (e.g. increased workload or travel time). Relatively little emotional support was perceived to be offered. Leaders sometimes characterized adverse emotional reactions to the centralization as resistance, to be overcome through persuasion and appeals to the success of the new system. CONCLUSIONS: Large-scale reorganizations are likely to provoke a high degree of emotion and perceptions of loss. Resources to foster coping and resilience should be made available to all organizations within the system as they go through major change.

Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study.

BACKGROUND: Improving care coordination is particularly important for individuals with rare conditions (who may experience multiple inputs into their care, across different providers and settings). To develop and evaluate strategies to potentially improve care coordination, it is necessary to develop a method for organising different ways of coordinating care for rare conditions. Developing a taxonomy would help to describe different ways of coordinating care and in turn facilitate development and evaluation of pre-existing and new models of care coordination for rare conditions. To the authors' knowledge, no studies have previously developed taxonomies of care coordination for rare conditions. This research aimed to develop and refine a care coordination taxonomy for people with rare conditions. METHODS: This study had a qualitative design and was conducted in the United Kingdom. To develop a taxonomy, six stages of taxonomy development were followed. We conducted interviews (n = 30 health care professionals/charity representatives/commissioners) and focus groups (n = 4 focus groups, 22 patients/carers with rare/ultra-rare/undiagnosed conditions). Interviews and focus groups were audio-recorded with consent, and professionally transcribed. Findings were analysed using thematic analysis. Themes were used to develop a taxonomy, and to identify which types of coordination may work best in which situations. To refine the taxonomy, we conducted two workshops (n = 12 patients and carers group; n = 15 professional stakeholder group). RESULTS: Our taxonomy has six domains, each with different options. The six domains are: (1) Ways of organising care (local, hybrid, national), (2) Ways of organising those involved in care (collaboration between many or all individuals, collaboration between some individuals, a lack of collaborative approach), (3) Responsibility for coordination (administrative support, formal roles and responsibilities, supportive roles and no responsibility), (4) How often appointments and coordination take place (regular, on demand, hybrid), (5) Access to records (full or filtered access), and (6) Mode of care coordination (face-to-face, digital, telephone). CONCLUSIONS: Findings indicate that there are different ways of coordinating care across the six domains outlined in our taxonomy. This may help to facilitate the development and evaluation of existing and new models of care coordination for people living with rare conditions.

Understanding the Political Skills and Behaviours for Leading the Implementation of Health Services Change: A Qualitative Interview Study.

BACKGROUND: The implementation of change in health and care services is often complicated by organisational micro-politics. There are calls for those leading change to develop and utilise political skills and behaviours to understand and mediate such politics, but to date only limited research offers a developed empirical conceptualisation of the political skills and behaviours for leading health services change. METHODS: A qualitative interview study was undertaken with 66 healthcare leaders from the English National Health Service (NHS). Participants were sampled on the basis of their variable involvement in leading change processes, taking into account anticipated differences in career stage, leadership level and role, care sector, and professional backgrounds. Interpretative data analysis led to the development of five themes. RESULTS: Participants' accounts highlighted five overarching sets of political skills and behaviours: personal and inter-personal qualities relating to self-belief, resilience and the ability to adapt to different audiences; strategic thinking relating to the ability to understand the wider and local political landscape from which to develop realistic plans for change; communication skills for engaging and influencing stakeholders, especially for understanding and mediating stakeholders' competing interests; networks and networking in terms of access to resources, and building connections between stakeholders; and relational tactics for dealing with difficult individuals through more direct forms of negotiation and persuasion. CONCLUSION: The study offers further empirical insight the existing literature on healthcare organisational politics by describing and conceptualising the political skills and behaviours of implementing health services change.

"Attending to History" in Major System Change in Healthcare in England: Specialist Cancer Surgery Service Reconfiguration.

BACKGROUND: The reconfiguration of specialist hospital services, with service provision concentrated in a reduced number of sites, is one example of major system change (MSC) for which there is evidence of improved patient outcomes. This paper explores the reconfiguration of specialist oesophago-gastric (OG) cancer surgery services in a large urban area of England (Greater Manchester, GM), with a focus on the role of history in this change process and how reconfiguration was achieved after previous failed attempts. METHODS: This study draws on qualitative research from a mixed-methods evaluation of the reconfiguration of specialist cancer surgery services in GM. Forty-six interviews with relevant stakeholders were carried out, along with ~160 hours of observations at meetings and the acquisition of ~300 pertinent documents. Thematic analysis using deductive and inductive approaches was undertaken, guided by a framework of 'simple rules' for MSC. RESULTS: Through an awareness of, and attention to, history, leaders developed a change process which took into account previous unsuccessful reconfiguration attempts, enabling them to reduce the impact of potentially challenging issues. Interviewees described attending to issues involving competition between provider sites, change leadership, engagement with stakeholders, and the need for a process of change resilient to challenge. CONCLUSION: Recognition of, and response to, history, using a range of perspectives, enabled this reconfiguration. Particularly important was the way in which history influenced and informed other aspects of the change process and the influence of stakeholder power. This study provides further learning about MSC and the need for a range of perspectives to enable understanding. It shows how learning from history can be used to enable successful change.

Inter-organisational collaboration enabling care delivery in a specialist cancer surgery provider network: A qualitative study.

OBJECTIVE: To explore the processes, challenges and strategies used to govern and maintain inter-organisational collaboration between professionals in a provider network in London, United Kingdom, which implemented major system change focused on the centralisation of specialist cancer surgery. METHODS: We used a qualitative design involving interviews with stakeholders (n = 117), non-participant observations (n = 163) and documentary analysis (n = 100). We drew on an existing model of collaboration in healthcare organisations and expanded this framework by applying it to the analysis of collaboration in the context of major system change. RESULTS: Network provider organisations established shared goals, maintained central figures who could create and sustain collaboration, and promoted distributed forms of leadership. Still, organisations continued to encounter barriers or challenges in relation to developing opportunities for mutual acquaintanceship across all professional groups; the active sharing of knowledge, expertise and good practice across the network; the fostering of trust; and creation of information exchange infrastructures fit for collaborative purposes. CONCLUSION: Collaborative relationships changed over time, becoming stronger post-implementation in some areas, but continued to be negotiated where resistance to the centralisation remained. Future research should explore the sustainability of these relationships and further unpack how hierarchies and power relationships shape inter-organisational collaboration.

Development of models of care coordination for rare conditions: a qualitative study.

INTRODUCTION: Improving care coordination for people with rare conditions may help to reduce burden on patients and carers and improve the care that patients receive. We recently developed a taxonomy of different ways of coordinating care for rare conditions. It is not yet known which models of care coordination are appropriate in different situations. This study aimed to: (1) explore what types of care coordination may be appropriate in different situations, and (2) use these findings to develop hypothetical models of care coordination for rare conditions. METHODS: To explore appropriateness of different types of care coordination, we conducted interviews (n = 30), four focus groups (n = 22) and two workshops (n = 27) with patients, carers, healthcare professionals, commissioners, and charity representatives. Participants were asked about preferences, benefits and challenges, and the factors influencing coordination. Thematic analysis was used to develop hypothetical models of care coordination. Models were refined following feedback from workshop participants. RESULTS: Stakeholders prefer models of care that: are nationally centralised or a hybrid of national and local care, involve professionals collaborating to deliver care, have clear roles and responsibilities outlined (including administrative, coordinator, clinical and charity roles), provide access to records and offer flexible appointments (in terms of timing and mode). Many factors influenced coordination, including those relating to the patient (e.g., condition complexity, patient's location and ability to coordinate their own care), the healthcare professional (e.g., knowledge and time), the healthcare environment (e.g., resources) and societal factors (e.g., availability of funding). We developed and refined ten illustrative hypothetical models of care coordination for rare conditions. CONCLUSION: Findings underline that different models of care coordination may be appropriate in different situations. It is possible to develop models of care coordination which are tailored to the individual in context. Findings may be used to facilitate planning around which models of care coordination may be appropriate in different services or circumstances. Findings may also be used by key stakeholders (e.g. patient organisations, clinicians and service planners) as a decision-making tool.

Operational analysis of school-based delivery models to vaccinate children against influenza.

Large-scale immunisation programmes against seasonal influenza are characterised by logistical challenges related to the need for vaccinating large cohorts of people in a short amount of time. Careful operational planning of resources is essential for a successful implementation of such programmes. We focused on the process of child vaccination in schools and analysed the staffing and workflow aspects of a school-aged children vaccination programme in England. Our objectives were to document vaccination processes and analyse times and costs associated with different models deployed across England. We collected data through direct non-participatory observations. Statistical data analysis enabled us to identify potential factors influencing vaccine delivery time and informed the development of a tool to simulate vaccination sessions. Using this tool, we carried out scenario analyses and explored trade-offs between session times and costs in different settings. Our work ultimately supported the local implementation of school-based vaccination.

How to Cost the Implementation of Major System Change for Economic Evaluations: Case Study Using Reconfigurations of Specialist Cancer Surgery in Part of London, England.

BACKGROUND: Studies have been published regarding the impact of major system change (MSC) on care quality and outcomes, but few evaluate implementation costs or include them in cost-effectiveness analysis (CEA). This is despite large potential costs of MSC: change planning, purchasing or repurposing assets, and staff time. Implementation costs can influence implementation decisions. We describe our framework and principles for costing MSC implementation and illustrate them using a case study. METHODS: We outlined MSC implementation stages and identified components, using a framework conceived during our work on MSC in stroke services. We present a case study of MSC of specialist surgery services for prostate, bladder, renal and oesophagogastric cancers, focusing on North Central and North East London and West Essex. Health economists collaborated with qualitative researchers, clinicians and managers, identifying key reconfiguration stages and expenditures. Data sources (n = approximately 100) included meeting minutes, interviews, and business cases. National Health Service (NHS) finance and service managers and clinicians were consulted. Using bottom-up costing, items were identified, and unit costs based on salaries, asset costs and consultancy fees assigned. Itemised costs were adjusted and summed. RESULTS: Cost components included options appraisal, bidding process, external review; stakeholder engagement events; planning/monitoring boards/meetings; and making the change: new assets, facilities, posts. Other considerations included hospital tariff changes; costs to patients; patient population; and lifetime of changes. Using the framework facilitated data identification and collection. The total adjusted implementation cost was estimated at £7.2 million, broken down as replacing robots (£4.0 million), consultancy fees (£1.9 million), staff time costs (£1.1 million) and other costs (£0.2 million). CONCLUSIONS: These principles can be used by funders, service providers and commissioners planning MSC and researchers evaluating MSC. Health economists should be involved early, alongside qualitative and health-service colleagues, as retrospective capture risks information loss. These analyses are challenging; many cost factors are difficult to identify, access and measure, and assumptions regarding lifetime of the changes are important. Including implementation costs in CEA might make MSC appear less cost effective, influencing future decisions. Future work will incorporate this implementation cost into the full CEAs of the London Cancer MSC. TRIAL REGISTRATION: Not applicable.

The contribution of political skill to the implementation of health services change: a systematic review and narrative synthesis.

BACKGROUND: The implementation of strategic health system change is often complicated by informal 'politics' in healthcare organisations. Leadership development programmes increasingly call for the development and use of 'political skill' as a means for understanding and managing the politics of healthcare organisations. The primary purpose of this review is to determine how political skill contributes to the implementation of health services change, within and across organisations. The secondary purpose is to demonstrate the conceptual variations within the literature. METHODS: The article is based upon a narrative synthesis that included quantitative, qualitative and mixed methods research papers, review articles and professional commentaries that deployed the concept of political skill (or associated terms) to describe and analyse the implementation of change in healthcare services. RESULTS: Sixty-two papers were included for review drawn from over four decades of empirically and conceptually diverse research. The literature is comprised of four distinct literatures with a lack of conceptual coherence. Within and across these domains, political skill is described as influencing health services change through five dimensions of leadership: personal performance; contextual awareness; inter-personal influence; stakeholder engagement, networks and alliances; and influence on policy processes. CONCLUSION: There is a growing body of evidence showing how political skill can contribute to the implementation of health services change, but the evidence on explanatory processes is weak. Moreover, the conceptualisation of political skill is variable making comparative analysis difficult, with research often favouring individual-level psychological and behavioural properties over more social or group processes.

How are patients with rare diseases and their carers in the UK impacted by the way care is coordinated? An exploratory qualitative interview study.

BACKGROUND: Care coordination is considered important for patients with rare conditions, yet research addressing the impact of care coordination is limited. This study aimed to explore how care coordination (or lack of) impacts on patients and carers. Semi-structured interviews were conducted with 15 patients and carers/parents in the UK, representing a range of rare conditions (including undiagnosed conditions). Transcripts were analysed thematically in an iterative process. RESULTS: Participants described a range of experiences and views in relation to care coordination. Reports of uncoordinated care emerged: appointments were uncoordinated, communication between key stakeholders was ineffective, patients and carers were required to coordinate their own care, and care was not coordinated to meet the changing needs of patients in different scenarios. As a result, participants experienced an additional burden and barriers/delays to accessing care. The impacts described by patients and carers, either attributed to or exacerbated by uncoordinated care, included: impact on physical health (including fatigue), financial impact (including loss of earnings and travel costs), and psychosocial impact (including disruption to school, work and emotional burden). Overall data highlight the importance of flexible care, which meets individual needs throughout patients'/carers' journeys. Specifically, study participants suggested that the impacts may be addressed by: having support from a professional to coordinate care, changing the approach of clinics and appointments (where they take place, which professionals/services are available and how they are scheduled), and improving communication through the use of technology, care plans, accessible points of contact and multi-disciplinary team working. CONCLUSION: This study provides further evidence of impacts of uncoordinated care; these may be complex and influenced by a number of factors. Approaches to coordination which improve access to care and lessen the time and burden placed on patients and carers may be particularly beneficial. Findings should influence future service developments (and the evaluation of such developments). This will be achieved, in the first instance, by informing the CONCORD Study in the UK.

Implementing major system change in specialist cancer surgery: The role of provider networks.

OBJECTIVE: Major system change (MSC) has multiple, sometimes conflicting, goals and involves implementing change across a number of organizations. This study sought to develop new understanding of how the role that networks can play in implementing MSC, using the case of centralization of specialist cancer surgery in London, UK. METHODS: The study was based on a framework drawn from literature on networks and MSC. We analysed 100 documents, conducted 134 h of observations during relevant meetings and 81 interviews with stakeholders involved in the centralization. We analysed the data using thematic analysis. RESULTS: MSC in specialist cancer services was a contested process, which required constancy in network leadership over several years, and its horizontal and vertical distribution across the network. A core central team composed of network leaders, managers and clinical/manager hybrid roles was tasked with implementing the changes. This team developed different forms of engagement with provider organizations and other stakeholders. Some actors across the network, including clinicians and patients, questioned the rationale for the changes, the clinical evidence used to support the case for change, and the ways in which the changes were implemented. CONCLUSIONS: Our study provides new understanding of MSC by discussing the strategies used by a provider network to facilitate complex changes in a health care context in the absence of a system-wide authority.

Defining Coordinated Care for People with Rare Conditions: A Scoping Review.

INTRODUCTION: To coordinate care effectively for rare conditions, we need to understand what coordinated care means. This review aimed to define coordinated care and identify components of coordinated care within the context of rare diseases; by drawing on evidence from chronic conditions. METHODS: A systematic scoping review. We included reviews that reported or defined and outlined components of coordinated care for chronic or rare conditions. Thematic analysis was used to develop a definition and identify components or care coordination. Stakeholder consultations (three focus groups with patients, carers and healthcare professionals with experience of rare conditions) were held to further explore the relevance of review findings for rare conditions. RESULTS: We included 154 reviews (n = 139 specific to common chronic conditions, n = 3 specific to rare conditions, n = 12 both common/rare conditions). A definition of coordination was developed. Components were identified and categorised by those that: may need to be coordinated, inform how to coordinate care, have multiple roles, or that contextualise coordination. CONCLUSIONS: Coordinated care is multi-faceted and has both generic and context-specific components. Findings outline many ways in which care may be coordinated for both rare and common chronic conditions. Findings can help to develop and eventually test different ways of coordinating care for people with rare and common chronic conditions.

Variation in quality of acute stroke care by day and time of admission: prospective cohort study of weekday and weekend centralised hyperacute stroke unit care and non-centralised services.

OBJECTIVE: To investigate variations in quality of acute stroke care and outcomes by day and time of admission in London hyperacute stroke units compared with the rest of England. DESIGN: Prospective cohort study using anonymised patient-level data from the Sentinel Stroke National Audit Programme. SETTING: Acute stroke services in London hyperacute stroke units and the rest of England. PARTICIPANTS: 68 239 patients with a primary diagnosis of stroke admitted between January and December 2014. INTERVENTIONS: Hub-and-spoke model for care of suspected acute stroke patients in London with performance standards designed to deliver uniform access to high-quality hyperacute stroke unit care across the week. MAIN OUTCOME MEASURES: 16 indicators of quality of acute stroke care, mortality at 3 days after admission to the hospital, disability at the end of the inpatient spell, length of stay. RESULTS: There was no variation in quality of care by day and time of admission to the hospital across the week in terms of stroke nursing assessment, brain scanning and thrombolysis in London hyperacute stroke units, nor was there variation in 3-day mortality or disability at hospital discharge (all p values>0.05). Other quality of care measures significantly varied by day and time of admission across the week in London (all p values<0.01). In the rest of England there was variation in all measures by day and time of admission across the week (all p values<0.01), except for mortality at 3 days (p value>0.05). CONCLUSIONS: The London hyperacute stroke unit model achieved performance standards for 'front door' stroke care across the week. The same benefits were not achieved by other models of care in the rest of England. There was no weekend effect for mortality in London or the rest of the England. Other aspects of care were not constant across the week in London hyperacute stroke units, indicating some performance standards were perceived to be more important than others.

What does it take to provide clinical interventions with temporal consistency? A qualitative study of London hyperacute stroke units.

OBJECTIVES: Seven-day working in hospitals is a current priority of international health research and policy. Previous research has shown variability in delivering evidence-based clinical interventions across different times of day and week. We aimed to identify factors influencing such variations in London hyperacute stroke units (HASUs). DESIGN: Interview and observation study to explain patterns of variation in delivery and outcomes of care described in a quantitative partner paper (Melnychuk et al). SETTING: Eight HASUs in London. PARTICIPANTS: We interviewed HASU staff (n=76), including doctors, nurses, therapists and administrators. We also conducted non-participant observations of delivery of care at different times of the day and week (n=45; ~102 hours). We analysed the data for thematic content relating to the ability of staff to provide evidence-based interventions consistently at different times of the day and week. RESULTS: Staff were able to deliver 'front door' interventions consistently by taking on additional responsibilities out of hours (eg, deciding eligibility for thrombolysis); creating continuities between day and night (through, eg, governance processes and staggering rotas); building trusting relationships with, eg, Radiology and Emergency Departments and staff prioritisation of 'front door' interventions. Variations by time of day resulted from reduced staffing in HASUs and elsewhere in hospitals in the evenings and at the weekend. Variations by day of week (eg, weekend effect) resulted from lack of therapy input and difficulties repatriating patients at weekends, and associated increases in pressure on Fridays and Mondays. CONCLUSIONS: Evidence-based service standards can facilitate 7-day working in acute stroke services. Standards should ensure that the capacity and capabilities required for 'front door' interventions are available 24/7, while other services, for example, therapies are available every day of the week. The impact of standards is influenced by interdependencies between HASUs, other hospital services and social services.