Search

Abstract Background Social prescribing is gaining traction internationally. It is an approach which seeks to address non-medical and health-related social needs through taking a holistic person-centred and community-based approach. This involves connecting people with and supporting them to access groups and organisations within their local communities. It is hoped that social prescribing might improve health inequities and reduce reliance on healthcare services. In the UK, social prescribing link workers have become core parts of primary care teams. Despite growing literature on the implementation of social prescribing, to date there has been no synthesis that develops a theoretical understanding of the factors that shape link workers’ experiences of their role. Methods We undertook a meta-ethnographic evidence synthesis of qualitative literature to develop a novel conceptual framework that explains how link workers experience their roles. We identified studies using a systematic search of key databases, Google alerts, and through scanning reference lists of included studies. We followed the eMERGe guidance when conducting and reporting this meta-ethnography. Results Our synthesis included 21 studies and developed a “line of argument” or overarching conceptual framework which highlighted inherent and interacting tensions present at each of the levels that social prescribing operates. These tensions may arise from a mismatch between the policy logic of social prescribing and the material and structural reality, shaped by social, political, and economic forces, into which it is being implemented. Conclusions The tensions highlighted in our review shape link workers’ experiences of their role. They may call into question the sustainability of social prescribing and the link worker role as currently implemented, as well as their ability to deliver desired outcomes such as reducing health inequities or healthcare service utilisation. Greater consideration should be given to how the link worker role is defined, deployed, and trained. Furthermore, thought should be given to ensuring that the infrastructure into which social prescribing is being implemented is sufficient to meet needs. Should social prescribing seek to improve outcomes for those experiencing social and economic disadvantage, it may be necessary for social prescribing models to allow for more intensive and longer-term modes of support.

Background Social prescribing link workers have become part of primary health care in recent years. They help patients to recognise non-medical factors affecting their health and identify sources of support, often in the voluntary, community and social enterprise sector. They form part of wider work to strengthen person-centred care, which actively seeks to engage individuals in decision-making about their health, taking into account their medical, social, psychological, financial and spiritual circumstances. Objective To understand how buy-in to social prescribing and the link worker role is established for a patient, and how this relates to person-centred care. Design A realist evaluation. Setting Patients engaging with link workers in seven different parts of England were involved. Methods As part of data collection, we observed link workers interacting with 35 patients. We also interviewed 61 patients and re-interviewed 41 of them 9–12 months later. Data were coded and developed into context–mechanism–outcome configurations, which were used to produce a programme theory. Results Data highlighted how patients might be uncertain about the link worker role but agree to a referral as they sought assistance with their non-medical issues. Patients talked about experiencing a sense of hope through the trust they developed in a link worker. This trust was established through the communication skills and knowledge demonstrated by a link worker, and by their ability to act as an anchor point when required – a reliable, consistent source of support to whom patients could offload. The link worker role also involved connecting patients to external support, which called for sensitivity around how ready someone was to move forward; this was shaped by a patient’s motivation but also their capacity to make changes given other demands in their life. Connecting patients to external support could be affected by structural factors outside the link workers’ control (e.g. housing options or employment opportunities). Limitations We did not interview patients who had rejected the offer of social prescribing, and most had a positive view of meeting with a link worker. Conclusions Person-centred care is engendered by link workers through their skills, knowledge and ability to respond to the individual readiness of patients to engage with external support. It can be curtailed by structural factors outside link workers’ sphere of control, such as access to housing or caring responsibilities of patients. This can hinder patients’ ability to ‘connect to’, leaving link workers to continue ‘connecting with’ patients as they act as an anchor point. Future work Exploration is required of factors affecting patients who interact with a link worker but do not access external support. Longitudinal work with a cohort of patients, speaking to them on a regular basis, may provide further understanding in this respect. Funding This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR130247. Plain language summary People’s health and well-being can be affected by non-medical issues (e.g. loneliness, money worries, housing problems). Social prescribing helps people with these issues by connecting them to support, often in the voluntary-community sector. Link workers are key to social prescribing. They listen to people talk about non-medical issues affecting how they feel physically and/or psychologically. They also connect people to external support – such as a befriending service, volunteering opportunities, organisations that give advice on money/housing, or other community groups. It is an important role, but we need to know more about how link workers work best, which our study set out to do. In our study, we collected data around seven link workers in different areas of England. As part of data collection, we interviewed 61 patients and re-interviewed 41 of them 9–12 months later. We also watched 35 patients meeting with a link worker. We found that patients were often unsure about what to expect when a doctor referred them to a link worker. However, they hoped this person could help them with their non-medical issues. When link workers were warm, non-judgmental and listened, patients were more likely to trust them. This trust was increased when link workers shared knowledge of and directed patients towards options in the community that could support their non-medical issues. Patients thought it was important for link workers to be a consistent source of support, who did not push them to do things they were not ready to try. Our research provides an insight into how link workers can provide a person-centred approach when supporting patients. This means that the needs, values and individual situation of patients take priority. It calls for an equal partnership to be created between a patient and link worker in deciding how to address the former’s non-medical issues.

Background Social prescribing addresses non-medical factors affecting health and well-being. Link workers are key to its delivery by connecting people to relevant support, often in the voluntary, community and social enterprise sector. Funding from the National Health Service means that link workers are becoming a common part of primary care in England. Objective To explore and understand the implementation of link workers in primary care in England. Design A realist evaluation addressed the question – When implementing link workers in primary care to sustain outcomes – what works, for whom, why and in what circumstances? Setting Link workers and staff associated with seven primary care sites across England. Methods Researchers spent 3 weeks with each link worker, going to meetings with them, watching them interact with patients, with healthcare staff and with voluntary, community and social enterprise organisations. In addition, interviews were conducted with 61 patients and 93 professionals (voluntary, community and social enterprise representatives and healthcare staff, including link workers). Follow-up interviews were conducted with 41 patients and with link workers 9–12 months later. Data were coded and developed into statements to identify how context around the link worker triggers mechanisms that lead to intended and unintended outcomes. Results We found that link workers exercise micro-discretions in their role – actions and advice-giving based on personal judgement of a situation, which may not always reflect explicit guidance or protocols. Our analysis highlighted that micro-discretions engender positive connections (with patients, healthcare staff, the voluntary, community and social enterprise sector) and promote buy-in to the link worker role in primary care. Micro-discretions supported delivery of person-centred care and enhanced job satisfaction. Data also highlighted that lack of boundaries could place link workers at risk of overstepping their remit. Limitations Our research focused on link workers attached to primary care; findings may not be applicable to those working in other settings. Data were collected around seven link worker cases, who were selected purposively for variation in terms of geographical spread and how/by whom link workers were employed. However, these link workers were predominately white females. Conclusions Enabling link workers to exercise micro-discretions allows for responsiveness to individual patient needs but can result in uncertainty and to link workers feeling overstretched. Future work Poor link worker retention may, in part, be associated with a lack of clarity around their role. Research to explore how this shapes intention to leave their job is being conducted by authors of this paper. Funding This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR130247. Plain language summary Problems in life affecting people’s health and well-being cannot always be fixed with medication. For example, loneliness can lower people’s mood, or worries about money can cause them to feel anxious. Social prescribing link workers are employed to support individuals with these ‘non-medical’ issues. They listen to people to find out about them and their circumstances. They may connect them to community groups, organisations or services, or help them get advice about things like benefits or housing. Our study explored how link workers are being implemented in primary care in England. We studied seven link workers based in different parts of England. We spent 3 weeks with each link worker, observing them at their workplace. We also interviewed these link workers and people they worked with; this included 61 patients, 61 primary care staff, 5 other link workers and 20 individuals from the voluntary or community sector. We found big differences in what link workers did in their roles; in how long they saw patients for and how often, how many patients they were supporting at one time, their professional and personal backgrounds, whether they worked in a practice alone or were part of a bigger team of people delivering social prescribing. Link workers had varying levels of flexibility (or discretion) in their jobs; this allowed them to support patients’ individual needs. Such flexibility gave them job satisfaction as they were able to use their judgement about how to work with patients to provide person-centred support. However, if this went too far – and link workers had too few boundaries and not enough guidance – they ended up feeling overwhelmed by their job.

BackgroundMany health care systems have used digital technologies to support care delivery, a trend amplified by the COVID-19 pandemic. “Digital first” may exacerbate health inequalities due to variations in eHealth literacy. The relationship between eHealth literacy and web-based urgent care service use is unknown. ObjectiveThis study aims to measure the association between eHealth literacy and the use of NHS (National Health Service) 111 online urgent care service. MethodsA cross-sectional sequential convenience sample survey was conducted with 2754 adults (October 2020-July 2021) from primary, urgent, or emergency care; third sector organizations; and the NHS 111 online website. The survey included the eHealth Literacy Questionnaire (eHLQ), questions about use, preferences for using NHS 111 online, and sociodemographic characteristics. ResultsAcross almost all dimensions of the eHLQ, NHS 111 online users had higher mean digital literacy scores than nonusers (P

Abstract Background The World Health Organization (WHO) recommends that women with HIV breastfeed for a minimum of one year. In contrast, United Kingdom (UK) guidelines encourage formula feeding, but breastfeeding can be supported under certain circumstances. Infant-feeding decisions often involve personal and social networks. Currently, little research addresses how individuals with HIV in high-income countries navigate infant-feeding decisions with the father of their children. Methods Semi-structured remote interviews were conducted with UK-based individuals with a confirmed HIV positive diagnosis who were pregnant or one-year postpartum, and two partners. Using purposive sampling, pregnant and postpartum participants were recruited through HIV NHS clinics and community-based organisations, and where possible, fathers were recruited via them. Data were analysed using thematic analysis and organised using NVivo 12. Results Of the 36 women interviewed, 28 were postpartum. The majority were of Black African descent (n = 22) and born outside the UK. The key factors in women navigating HIV and infant-feeding discussions with respect to their baby’s father were the latter’s: (1) awareness of woman’s HIV status; (2) relationship with the woman; (3) confidence in infant-feeding decision; (4) support and opinion about woman’s infant-feeding intentions. Most women made a joint decision with biological fathers when in a long-term (> one year) relationship with them. Single women tended not to discuss their infant-feeding decision with the father of their child, often for safety reasons. Conclusion Women in ongoing relationships with the father of their child valued their support and opinions regarding infant-feeding. In contrast, single women chose not to involve the father for reasons of privacy and safety. Clinical teams and community-based organisations should support mothers in discussing infant-feeding decisions regardless of relationship status. When appropriate, they should also support discussions with their partners, but remain sensitive to circumstances where this may put women at risk.

Abstract An understanding of factors influencing implementation is essential to realise the benefits of population-based reproductive genetic carrier screening programs. The aim of this study was to synthesise data collected during the Australian Reproductive Genetic Carrier Screening Project (Mackenzie’s Mission) to track how priorities shifted over time and identify important factors during scaling-up and for sustainment. We used a multi-method qualitative approach to integrate longitudinal project data collected from 10 project committees with 16 semi-structured interviews conducted with study team members. Both datasets were analysed using the Consolidated Framework for Implementation Research (CFIR) to identify constructs of interest within early, mid-point, and future implementation phases. Several CFIR constructs were present across implementation. The complexity of implementation presented challenges that were overcome through a quality-designed and packaged product, formal and informal networks and communication, and access to knowledge and information. Addressing the diverse consumer needs through resources and increasing community and non-genetic speciality engagement remained a priority throughout and for future sustainment. Going forward, further addressing program complexities and securing funding were emphasised. By applying an implementation framework, findings from this study may be useful for future effort towards building and/or sustaining reproductive genetic carrier screening programs.

Abstract Background The diversity of patient experiences of orphan drug development has until recently been overlooked, with the existing literature reporting the experience of some patients and not others. The current evidence base (the best available current research) is dominated by quantitative surveys and patient reported outcome measures defined by researchers. Where research that uses qualitative methods of data collection and analysis has been conducted, patient experiences have been studied using content analysis and automatic textual analysis, rather than in-depth qualitative analytical methods. Systematic reviews of patient engagement in orphan drug development have also excluded qualitative studies. The aim of this paper is to review qualitative literature about how patients and other members of the public engage with orphan drug development. Methods We conducted a systematic search of qualitative papers describing a range of patient engagement practices and experiences were identified and screened. Included papers were appraised using a validated tool (CASP), supplemented by reporting guidance (COREQ), by two independent researchers. Results 262 papers were identified. Thirteen papers reported a range of methods of qualitative data collection. Many conflated patient and public involvement and engagement (PPIE) with qualitative research. Patients were typically recruited via their physician or patient organisations. We identified an absence of overarching philosophical or methodological frameworks, limited details of informed consent processes, and an absence of recognisable methods of data analysis. Our narrative synthesis suggests that patients and caregivers need to be involved in all aspects of trial design, including the selection of clinical endpoints that capture a wider range of outcomes, the identification of means to widen access to trial participation, the development of patient facing materials to optimise their decision making, and patients included in the dissemination of trial results. Conclusions This narrative qualitative synthesis identified the explicit need for methodological rigour in research with patients with rare diseases (e.g. appropriate and innovative use of qualitative methods or PPIE, rather than their conflation); strenuous efforts to capture the perspectives of under-served, under-researched or seldom listened to communities with experience of rare diseases (e.g. creative recruitment and wider adoption of post-colonial practices); and a re-alignment of the research agenda (e.g. the use of co-design to enable patients to set the agenda, rather than respond to what they are being offered).

Abstract Background The failure of randomised controlled trials to adequately reflect areas of highest health need have been repeatedly highlighted. This has implications for the validity and generalisability of findings, for equity and efficiency, but also for research capacity-building. Rai et al. (BMC Med Res Methodol 21:80, 2021) recently argued that the poor alignment between UK clinical research activity (specifically multi-centre RCTs) and local prevalence of disease was, in part, the outcome of behaviour and decision-making by Chief Investigators involved in trial research. They argued that a shift in research culture was needed. Following our recent multi-site mixed methods evaluative study about NHS 111 online we identify some of the additional structural barriers to delivering health research “where populations with the most disease live”, accounting for the Covid-19 disruption to processes and delivery. Methods The NHS 111 study used a mixed-method research design, including interviews with healthcare staff and stakeholders within the primary, urgent and emergency health care system, and a survey of users and potential users of the NHS 111 online service. This paper draws on data collated by the research team during site identification and selection, as we followed an action research cycle of planning, action, observation and reflection. The process results were discussed among the authors, and grouped into the two themes presented. Results We approached 22 primary and secondary care sites across England, successfully recruiting half of these. Time from initial approach to first participant recruitment in successful sites ranged from one to ten months. This paper describes frontline bureaucratic barriers to research delivery and recruitment in the local Clinical Research Network system and secondary care sites carrying large research portfolios, alongside the adaptive practices of research practitioners that mitigate these. Conclusions This paper augments the recommendations of Rai et al., describing delays encountered during the COVID-19 pandemic, and suggesting in addition to cultural change, it may be additionally important to dismantle infrastructural barriers and improve support to research teams so they can conduct health research “where populations with the most disease live”.

Background Digital triage tools such as telephone advice and online symptom checkers are now commonplace in health systems internationally. Research has focused on consumers’ adherence to advice, health outcomes, satisfaction, and the degree to which these services manage demand for general practice or emergency departments. Such studies have had mixed findings, leaving equivocal the role of these services in healthcare. Objective We examined stakeholders’ perspectives on Healthdirect, Australia's national digital triage provider, focusing on its role in the health system, and barriers to operation, in the context of the COVID-19 pandemic. Methods Key stakeholders took part in semi-structured interviews conducted online in the third quarter of 2021. Transcripts were coded and thematically analysed. Results Participants (n = 41) were Healthdirect staff (n = 13), employees of Primary Health Networks (PHNs; n = 12), clinicians (n = 9), shareholder representatives (n = 4), consumer representatives (n = 2) and other policymakers (n = 1). Eight themes emerged from the analysis: (1) information and guidance in navigating the system, (2) efficiency through appropriate care, (3) value for consumers? (4) the difficulties in triage at a distance, (5) competition and the unfulfilled promise of integration, (6) challenges in promoting Healthdirect, (7) monitoring and evaluating digital triage services and (8) rapid change, challenge and opportunity from COVID-19. Conclusion Stakeholders varied in their views of the purpose of Healthdirect's digital triage services. They identified challenges in lack of integration, competition, and the limited public profile of the services, issues largely reflective of the complexity of the policy and health system landscape. There was acknowledgement of the value of the services during the COVID-19 pandemic, and an expectation of them realising greater potential in the wake of the rapid uptake of telehealth.

Abstract Background The UK’s “Getting It Right First Time” programme recommends that management of people with fibromyalgia should centre on primary care. However, it remains unclear as to how best to organise health systems to deliver services to optimise patient outcomes. Aim To profile UK healthcare services for people with fibromyalgia: provision of National Health Services (NHS) and use of non-NHS services by people with fibromyalgia. Methods Two online open surveys (A and B) incorporating questions about diagnosis, treatment and management of fibromyalgia and gaps in healthcare services were conducted between 11th September 2019 and 3rd February 2020. These were targeted to NHS healthcare professionals consulting with people with fibromyalgia (Survey A) and people ≥16 years diagnosed with fibromyalgia using non-NHS services to manage their condition (Survey B). Descriptive statistics were used to report quantitative data. Thematic analysis was undertaken for qualitative data. Results Survey A received 1701 responses from NHS healthcare professionals across the UK. Survey B received 549 responses from people with fibromyalgia. The results show that NHS services for people with fibromyalgia are highly disparate, with few professionals reporting care pathways in their localities. Diagnosing fibromyalgia is variable among NHS healthcare professionals and education and pharmacotherapy are mainstays of NHS treatment and management. The greatest perceived unmet need in healthcare for people with fibromyalgia is a lack of available services. From the pooled qualitative data, three themes were developed: ‘a troublesome label’, ‘a heavy burden’ and ‘a low priority’. Through the concept of candidacy, these themes provide insight into limited access to healthcare for people with fibromyalgia in the UK. Conclusion This study highlights problems across the NHS in service provision and access for people with fibromyalgia, including several issues less commonly discussed; potential bias towards people with self-diagnosed fibromyalgia, challenges facing general practitioners seeking involvement of secondary care services for people with fibromyalgia, and a lack of mental health and multidisciplinary holistic services to support those affected. The need for new models of primary and community care that offer timely diagnosis, interventions to support self-management with access to specialist services if needed, is paramount.

Abstract Background Clinical leadership is fundamental in facilitating service improvements in healthcare. Few studies have attempted to understand or model the different approaches to leadership which are used when promoting the uptake and implementation of evidence-based interventions. This research aims to uncover and explain how distributed clinical leadership can be developed and improved to enhance the use of evidence in practice. In doing so, this study examines implementation leadership in orthopaedic surgery to explain leadership as a collective endeavour which cannot be separated from the organisational context. Methods A mixed-method study consisting of longitudinal and cross-sectional interviews and an embedded social network analysis will be performed in six NHS hospitals. A social network analysis will be undertaken in each hospital to uncover the organisational networks, the focal leadership actors and information flows in each organisation. This will be followed by a series of repeated semi-structured interviews, conducted over 4 years, with orthopaedic surgeons and their professional networks. These longitudinal interviews will be supplemented by cross-sectional interviews with the national established surgical leaders. All qualitative data will be analysed using a constructivist grounded theory approach and integrated with the quantitative data. The participant narratives will enrich the social network to uncover the leadership configurations which exist, and how different configurations of leadership are functioning in practice to influence implementation processes and outcomes. Discussion The study findings will facilitate understanding about how and why different configurations of leadership develop and under what organisational conditions and circumstances they are able to flourish. The study will guide the development of leadership interventions that are grounded in the data and aimed at advancing leadership for service improvement in orthopaedics. The strength of the study lies in the combination of multi-component, multi-site, multi-agent methods to examine leadership processes in surgery. The findings may be limited by the practical challenges of longitudinal qualitative data collection, such as ensuring participant retention, which need to be balanced against the theoretical and empirical insights generated through this comprehensive exploration of leadership across and within a range of healthcare organisations.

Abstract Background Internet-based Cognitive Behavioural Therapy (iCBT) is found effective in treating common mental disorders. However, the use of these interventions in routine care is limited. The international ImpleMentAll study is funded by the European Union’s Horizon 2020 programme. It is concerned with studying and improving methods for implementing evidence-based iCBT services for common mental disorders in routine mental health care. A digitally accessible implementation toolkit (ItFits-toolkit) will be introduced to mental health care organizations with the aim to facilitate the ongoing implementation of iCBT services within local contexts. This study investigates the effectiveness of the ItFits-toolkit by comparing it to implementation-as-usual activities. Methods A stepped wedge cluster randomized controlled trial (SWT) design will be applied. Over a trial period of 30 months, the ItFits-toolkit will be introduced sequentially in twelve routine mental health care organizations in primary and specialist care across nine countries in Europe and Australia. Repeated measures are applied to assess change over time in the outcome variables. The effectiveness of the ItFits-toolkit will be assessed in terms of the degree of normalization of the use of the iCBT services. Several exploratory outcomes including uptake of the iCBT services will be measured to feed the interpretation of the primary outcome. Data will be collected via a centralized data collection system and analysed using generalized linear mixed modelling. A qualitative process evaluation of routine implementation activities and the use of the ItFits-toolkit will be conducted within this study. Discussion The ImpleMentAll study is a large-scale international research project designed to study the effectiveness of tailored implementation. Using a SWT design that allows to examine change over time, this study will investigate the effect of tailored implementation on the normalization of the use of iCBT services and their uptake. It will provide a better understanding of the process and methods of tailoring implementation strategies. If found effective, the ItFits-toolkit will be made accessible for mental health care service providers, to help them overcome their context-specific implementation challenges. Trial registration ClinicalTrials.gov NCT03652883 . Retrospectively registered on 29 August 2018

Abstract Background Use of emergency department (ED) care globally seems to be increasing at a faster rate than population growth (Baker, House of Commons Library. Accident and Emergency Statistics, Demand, Performance, 2017). In the UK there has been a reported 16% rise in emergency admissions over the past 5 years. Estimates that between 11 and 40% of ED attendances are non-urgent, with 11% of patients being discharged from the ED without treatment (NHS Digital 2017), and a further 44% require no follow-up treatment (NHS Digital, Hospital Accident and Emergency Activity 2016-17, 2019) is cited as evidence that these patients did not require this level of care. The solution to not using the most appropriate point in the system has traditionally been seen as a knowledge problem, requiring, improved sign-posting and information to enable people to self-manage or use health care management for minor ailments. However research about help-seeking behaviour suggests that the problem may not be an informational one. A considerable literature points to help seeking as a social process influenced by a range of contingencies and contextual factors including the way in which lay people influence health care utilisation (Giebel et al. BMJ Open 9:1, 2019). Personal communities comprise a variety of active and significant social ties which have potential to influence individual capacity to seek help. Here we extend and unpack further influencing decisions about seeking formal health care with reference to how they are shaped and informed by and within personal social networks. Methods We undertook a personal network mapping and qualitative interview-based study to look at, problematize and understand attendance for non-urgent problems. We used network analysis and methods to map and characterise the personal communities of people seeking help from ED for minor ailments and semi-structured interviews with 40 people attending a single ED and associated GP hub providing equivalent care. Interviews were built around an ego network mapping activity and a topic guide structured to explore attender’s narratives about why they had visited the ED. This ego network activity uses a diagram consisting of three concentric circles (Fiori et al. J Gerontol B-Psychol 62: 322-30, 2007), representing closest social network members (in the centre) and those at further distance. Participants were initially presented with one of these diagrams and asked to write names of people or resources that had played a role in their attendance and the interviewer probed the interviewee to discuss the actions, input and value of the people and services that supported the visit to the ED. Results We analysed number and type of network connections and undertook a thematic analysis to identify how imagined and actual network members and influences were implicated in ED attendance. The network maps created during the interviews were examined and a typology of networks was developed and used to distinguish different types of networks informed by our reading of the data, and a Network Typology Scoring Tool, a measure of frequency of contact and relationship type in networks. Conclusions Our study suggests that faced with acute minor illness or injury people’s networks narrow: they do not (and perhaps cannot) mobilise their imagined care network because the resources or connections may not be there or are difficult to engage. In addition we identified important system drivers of behaviour, notably that these patients are often directed to the ED by ‘professional influencers’ including health services staff.

Abstract Background Healthcare policy-makers are expected to develop ‘evidence-based’ policies. Yet, studies have consistently shown that, like clinical practitioners, they need to combine many varied kinds of evidence and information derived from divergent sources. Working in the complex environment of healthcare decision-making, they have to rely on forms of (practical, contextual) knowledge quite different from that produced by researchers. It is therefore important to understand how and why they transform research-based evidence into the knowledge they ultimately use. Methods We purposively selected four healthcare-commissioning organisations working with external agencies that provided research-based evidence to assist with commissioning; we interviewed a total of 52 people involved in that work. This entailed 92 interviews in total, each lasting 20–60 minutes, including 47 with policy-making commissioners, 36 with staff of external agencies, and 9 with freelance specialists, lay representatives and local-authority professionals. We observed 25 meetings (14 within the commissioning organisations) and reviewed relevant documents. We analysed the data thematically using a constant comparison method with a coding framework and developed structured summaries consisting of 20–50 pages for each case-study site. We iteratively discussed and refined emerging findings, including cross-case analyses, in regular research team meetings with facilitated analysis. Further details of the study and other results have been described elsewhere. Results The commissioners’ role was to assess the available care provision options, develop justifiable arguments for the preferred alternatives, and navigate them through a tortuous decision-making system with often-conflicting internal and external opinion. In a multi-transactional environment characterised by interactive, pressurised, under-determined decisions, this required repeated, contested sensemaking through negotiation of many sources of evidence. Commissioners therefore had to subject research-based knowledge to multiple ‘knowledge behaviours’/manipulations as they repeatedly re-interpreted and recrafted the available evidence while carrying out their many roles. Two key ‘incorporative processes’ underpinned these activities, namely contextualisation of evidence and engagement of stakeholders. We describe five Active Channels of Knowledge Transformation – Interpersonal Relationships, People Placement, Product Deployment, Copy, Adapt and Paste, and Governance and Procedure – that provided the organisational spaces and the mechanisms for commissioners to constantly reshape research-based knowledge while incorporating it into the eventual policies that configured local health services. Conclusions Our new insights into the ways in which policy-makers and practitioners inevitably transform research-based knowledge, rather than simply translate it, could foster more realistic and productive expectations for the conduct and evaluation of research-informed healthcare provision.

Abstract Theories occupy different positions in the scientific circle of enquiry as they vary in scope, abstraction, and complexity. Mid-range theories play a crucial bridging role between raw empirical observations and all-encompassing grand-theoretical schemes. A shift of perspective from ‘theories’ as products to ‘theorising’ as a process can enable empirical researchers to capitalise on the two-way relationships between empirical data and different levels of theory and contribute to the advancement of knowledge. This can be facilitated by embracing theoretically informative (in addition to merely theoretically informed) research, developing mechanism-based explanations, and broadening the repertoire of grand-theoretical orientations.

Establishing and running remote consultation services is challenging politically (interest groups may gain or lose), organizationally (remote consulting requires implementation work and new roles and workflows), economically (costs and benefits are unevenly distributed across the system), technically (excellent care needs dependable links and high-quality audio and images), relationally (interpersonal interactions are altered), and clinically (patients are unique, some examinations require contact, and clinicians have deeply-held habits, dispositions and norms). Many of these challenges have an under-examined ethical dimension. In this paper, we present a novel framework, Planning and Evaluating Remote Consultation Services (PERCS), built from a literature review and ongoing research. PERCS has 7 domains—the reason for consulting, the patient, the clinical relationship, the home and family, technologies, staff, the healthcare organization, and the wider system—and considers how these domains interact and evolve over time as a complex system. It focuses attention on the organization's digital maturity and digital inclusion efforts. We have found that both during and beyond the pandemic, policymakers envisaged an efficient, safe and accessible remote consultation service delivered through state-of-the art digital technologies and implemented via rational allocation criteria and quality standards. In contrast, our empirical data reveal that strategic decisions about establishing remote consultation services, allocation decisions for appointment type (phone, video, e-, face-to-face), and clinical decisions when consulting remotely are fraught with contradictions and tensions—for example, between demand management and patient choice—leading to both large- and small-scale ethical dilemmas for managers, support staff, and clinicians. These dilemmas cannot be resolved by standard operating procedures or algorithms. Rather, they must be managed by attending to here-and-now practicalities and emergent narratives, drawing on guiding principles applied with contextual judgement. We complement the PERCS framework with a set of principles for informing its application in practice, including education of professionals and patients.

Abstract Background Theoretical models have sought to comprehend and conceptualise how people seek help from health professionals but it is unclear if such models apply to urgent care. Much previous research does not explain the complex interactions that influence how people make sense of urgent care and how this shapes service use. This paper aims to conceptualise the complexity of sense-making and help-seeking behaviour in peoples’ everyday evaluations of when and how to access modern urgent care provision. Methods This study comprised longitudinal semi-structured interviews undertaken in the South of England. We purposively sampled participants 75+, 18–26 years, and from East/Central Europe (sub-sample of 41 received a second interview at + 6–12 months). Framework analysis was thematic and comparative. Results The amount and nature of the effort (work) undertaken to make sense of urgent care was an overarching theme of the analysis. We distinguished three distinct types of work: illness work, moral work and navigation work. These take place at an individual level but are also shared or delegated across social networks and shaped by social context and time. We have developed a conceptual model that shows how people make sense of urgent care through work which then influences help-seeking decisions and action. Conclusions There are important intersections between individual work and their social networks, further shaped by social context and time, to influence help-seeking. Recognising different, hidden or additional work for some groups may help design and configure services to support patient work in understanding and navigating urgent care.

Abstract Background Whilst many health systems offer a range of urgent and emergency care services to deal with the need for unscheduled care, these can be problematic to navigate. Objective To explore how lay people make sense of urgent care provision and processes. Design Qualitative study, incorporating citizen panels and longitudinal semi‐structured qualitative interviews. Setting and Participants Two citizens’ panels, comprising purposively selected public populations—a group of regular users and a group of potentially marginalized users of urgent and emergency care. Semi‐structured interviews were conducted with 100 people, purposively sampled to include those over 75, aged 18‐26 years, and from East/Central Europe. A sub‐sample of 41 people received a second interview at +6‐12 months. Framework analysis was thematic and comparative, moving through coding to narrative and interpretive summaries. Findings and Discussion Participants narratives illuminated considerable uncertainty and confusion regarding urgent and emergency care provision which in part could be traced to the contingent nature of urgent and emergency care need. Accounts of emergency care provision were underpinned by strong moral positioning of appropriate help‐seeking, demarcating legitimate service use that echoed policy rhetoric, but did not necessarily translate into individual behaviour. People struggled to make sense of urgent care provision making navigating “appropriate” use problematic. Conclusions The focus on help‐seeking behaviour, rather than sense‐making, makes it difficult to move beyond the polarization of “appropriate” and “inappropriate” service use. A deeper analysis of sense‐making might shift the focus of attention and allow us to intervene to reshape understandings before this point.

Abstract Aims The aim of this study was to provide guidance to improve the completeness and clarity of meta-ethnography reporting. Background Evidence-based policy and practice require robust evidence syntheses which can further understanding of people’s experiences and associated social processes. Meta-ethnography is a rigorous seven-phase qualitative evidence synthesis methodology, developed by Noblit and Hare. Meta-ethnography is used widely in health research, but reporting is often poor quality and this discourages trust in and use of its findings. Meta-ethnography reporting guidance is needed to improve reporting quality. Design The eMERGe study used a rigorous mixed-methods design and evidence-based methods to develop the novel reporting guidance and explanatory notes. Methods The study, conducted from 2015 to 2017, comprised of: (1) a methodological systematic review of guidance for meta-ethnography conduct and reporting; (2) a review and audit of published meta-ethnographies to identify good practice principles; (3) international, multidisciplinary consensus-building processes to agree guidance content; (4) innovative development of the guidance and explanatory notes. Findings Recommendations and good practice for all seven phases of meta-ethnography conduct and reporting were newly identified leading to 19 reporting criteria and accompanying detailed guidance. Conclusion The bespoke eMERGe Reporting Guidance, which incorporates new methodological developments and advances the methodology, can help researchers to report the important aspects of meta-ethnography. Use of the guidance should raise reporting quality. Better reporting could make assessments of confidence in the findings more robust and increase use of meta-ethnography outputs to improve practice, policy, and service user outcomes in health and other fields. This is the first tailored reporting guideline for meta-ethnography. This article is being simultaneously published in the following journals: Journal of Advanced Nursing, Psycho-oncology, Review of Education, and BMC Medical Research Methodology.

Ethnic inequalities in the experiences and outcomes of severe mental illness are well established. These include a higher incidence of severe mental illnesses (psychoses), adverse pathways into and through care, including crisis care, police and criminal justice systems involvement, and care under the powers of the Mental Health Act. The situation persists despite awareness and is driven by a mixture of the social determinants of poor health, societal disadvantage and structural racism, as well as conflictual interactions with care systems, which themselves are configured in ways that sustain or deepen these inequalities. Although training and education are often proposed, this is not shown to have sustained effects. Clinical processes (interviewing/assessment/formulation/intervention) need to address systemic influences and improve the cultural precision with which care is delivered, organised and commissioned. We discuss clinical ethnography and present evidence of its value in addressing systemic as well as individual care needs for diverse communities.

Objectives To examine patients’ accounts of their use of the internet before seeing a general practitioner (GP) using thematic analysis of semistructured interviews.Design Qualitative semistructured interview study with transcripts analysed thematically.Setting Primary care patients consulting with 10 GPs working at 7 GP practices of varying sizes and at a range of locations around London and the Southeast of England.Participants 28 adult patients: 16 women and 12 men ranging in age from 18 to 75 from a range of self-defined ethnic backgrounds. Participants were selected based on instances when the patients reported having used the internet before the consultation, when patients referred to the internet in the consultation or when the physician used the internet or made reference to it during the consultation.Results Patients report that they can find health information online that they believe is reliable and helpful for both themselves and their GP. However, they report uncertainty about how to share internet-based findings and reluctance to disclose their efforts at researching health issues online for fear of appearing disrespectful or interfering with the flow of the consultation.Conclusions Despite the democratisation of access to information about health due via the internet, patients continue to experience their use of the internet for health information as a sensitive and potentially problematic topic. The onus may well be on GPs to raise the likelihood (without judgement) that patients will have looked things up before consulting and invite them to talk about what they found.

Background: Policy has been focused on reducing unnecessary emergency department attendances by providing more responsive urgent care services and guiding patients to ‘the right place’. The variety of services has created a complex urgent care landscape for people to access and navigate. Objectives: To describe how the public, providers and policy-makers define and make sense of urgent care; to explain how sense-making influences patients’ strategies and choices; to analyse patient ‘work’ in understanding, navigating and choosing urgent care; to explain urgent care utilisation; and to identify potentially modifiable factors in decision-making. Design: Mixed-methods sequential design. Setting: Four counties in southern England coterminous with a NHS 111 provider area. Methods: A literature review of policy and research combined with citizens’ panels and serial qualitative interviews. Four citizens’ panels were conducted with the public, health-care professionals, commissioners and managers (n = 41). Three populations were sampled for interview: people aged ≥ 75 years, people aged 18–26 years and East European people. In total, 134 interviews were conducted. Analyses were integrated to develop a conceptual model of urgent care help-seeking. Findings: The literature review identified some consensus between policy and provider perspectives regarding the physiological factors that feature in conceptualisations of urgent care. However, the terms ‘urgent’ and ‘emergency’ lack specificity or consistency in meaning. Boundaries between urgent and emergency care are ill-defined. We constructed a typology that distinguishes three types of work that take place at both the individual and social network levels in relation to urgent care sense-making and help-seeking. Illness work involves interpretation and decision-making about the meaning, severity and management of physical symptoms and psychological states, and the assessment and management of possible risks. Help-seeking was guided by moral work: the legitimation and sanctioning done by service users. Navigation work concerned choosing and accessing services and relied on prior knowledge of what was available, accessible and acceptable. From these empirical data, we developed a model of urgent care sense-making and help-seeking behaviour that emphasises that work informs the interaction between what we think and feel about illness and the need to seek care (sense-making) and action – the decisions we take and how we use urgent care (help-seeking). Limitations: The sample population of our three groups may not have adequately reflected a diverse range of views and experiences. The study enabled us to capture people’s views and self-reported service use rather than their actual behaviour. Conclusions: Much of the policy surrounding urgent and emergency care is predicated on the notion that ‘urgent’ sits neatly between emergency and routine; however, service users in particular struggle to distinguish urgent from emergency or routine care. Rather than focusing on individual sense-making, future work should attend to social and temporal contexts that have an impact on help-seeking (e.g. why people find it more difficult to manage pain at night), and how different social networks shape service use. Future work: A whole-systems approach considering integration across a wider network of partners is key to understanding the complex relationships between demand for and access to urgent care. Study registration: This study is registered as UKCRN 32207. Funding: The National Institute for Health Research Health Services and Delivery Research programme.

Background: Health services internationally are exploring the potential of telehealth to support the management of the growing number of people with long-term conditions (LTCs). Aim: To develop, implement and evaluate new care programmes for patients with LTCs, focusing on two common LTCs as exemplars: depression or high cardiovascular disease (CVD) risk. Methods Development: We synthesised quantitative and qualitative evidence on the effectiveness of telehealth for LTCs, conducted a qualitative study based on interviews with patients and staff and undertook a postal survey to explore which patients are interested in different forms of telehealth. Based on these studies we developed a conceptual model [TElehealth in CHronic disease (TECH) model] as a framework for the development and evaluation of the Healthlines Service for patients with LTCs. Implementation: The Healthlines Service consisted of regular telephone calls to participants from health information advisors, supporting them to make behaviour change and to use tailored online resources. Advisors sought to optimise participants’ medication and to improve adherence. Evaluation: The Healthlines Service was evaluated with linked pragmatic randomised controlled trials comparing the Healthlines Service plus usual care with usual care alone, with nested process and economic evaluations. Participants were adults with depression or raised CVD risk recruited from 43 general practices in three areas of England. The primary outcome was response to treatment and the secondary outcomes included anxiety (depression trial), individual risk factors (CVD risk trial), self-management skills, medication adherence, perceptions of support, access to health care and satisfaction with treatment. Trial results Depression trial: In total, 609 participants were randomised and the retention rate was 86%. Response to treatment [Patient Health Questionnaire 9-items (PHQ-9) reduction of ≥ 5 points and score of

Background: English health-care commissioners from the NHS need information to commission effectively. In the light of new legislation in 2012, new ‘external’ organisations were created such as commissioning support units (CSUs), public health departments moved into local authorities and ‘external’ provider organisations such as commercial and not-for-profit agencies and freelance consultants were encouraged. The aim of this research from 2011 to 2014 was to study knowledge exchange between these external providers and health-care commissioners to learn about knowledge acquisition and transformation, the role of external providers and the benefits of contracts between external providers and health-care commissioners. Methods: Using a case study design, we collected data from eight cases, where commercial and not-for-profit organisations were contracted. We conducted 92 interviews with external providers (n = 36), their clients (n = 47) and others (n = 9), observed 25 training events and meetings and collected various documentation including meeting minutes, reports and websites. Using constant comparison, data were analysed thematically using a coding framework and summaries of cases. Results: In juggling competing agendas, commissioners pragmatically accessed and used information to build a cohesive, persuasive case to plot a course of action, convince others and justify decisions. Local data often trumped national or research-based information. Conversations and stories were fast, flexible and suited to the continually changing commissioning environment. Academic research evidence was occasionally explicitly sought, but usually came predigested via National Institute of Health and Care Excellence guidance, software tools and general practitioner clinical knowledge. Negative research evidence did not trigger discussions of disinvestment opportunities. Every commissioning organisation studied had its own unique blend of three types of commissioning models: clinical commissioning, integrated health and social care and commercial provider. Different types of information were privileged in each model. Commissioners regularly accessed information through five main conduits: (1) interpersonal relationships; (2) people placement (embedded staff); (3) governance (e.g. Department of Health directives); (4) ‘copy, adapt and paste’ (e.g. best practice elsewhere); and (5) product deployment (e.g. software tools). Interpersonal relationships appeared most crucial in influencing commissioning decisions. In transforming knowledge, commissioners undertook repeated, iterative processes of contextualisation using a local lens and engagement to refine the knowledge and ensure that the ‘right people’ were on board. Knowledge became transformed, reshaped and repackaged in the act of acquisition and through these processes as commissioners manoeuvred knowledge through the system. External providers were contracted for their skills and expertise in project management, forecast modelling, event management, pathway development and software tool development. Trust and usability influenced clients’ views on the usefulness of external providers, for example the motivations of Public Health and CSUs were more trusted, but the usefulness of their output was variable. Among the commercial and not-for-profit agencies in this study, one was not very successful, as the NHS clients thought that the external provider added little of extra value. With another, the benefits were largely still notional and with a third views were largely positive, with some concerns about expense. Analysts often benefited more than those making commissioning decisions. Conclusions: External providers who maximised their use of the different conduits and produced something of value beyond what was locally available appeared more successful. The long-standing schism between analysts and commissioners blunted the impact of some contracts on commissioners’ decision-making. To capitalise on the expertise of external providers, wherever possible, contracts should include explicit skills development and knowledge transfer components. Funding: The National Institute for Health Research Health Services and Delivery Research programme.

Background: NHS 111 represents a fundamental change in the way that urgent care is delivered. It is underpinned by a computer decision support system (CDSS) and involves significant labour substitution, in particular the greater use of non-clinical staff to deliver services. Objective: To investigate four core features of health-care innovation and change in relation to the new NHS 111 telephone-based service for 24/7 access to urgent care, namely the way in which work and workforce are organised for this new service and how the technology and organisational context shape the way in which services are delivered. Design: Comparative mixed-methods case study of NHS 111 providers. Settings: Five NHS 111 sites, characterised by differences in organisational size, form and ethos and in the type of workforce employed and professional roles and skill mix. Methods: The study combined ethnographic and survey methods. Non-participant observation was conducted at NHS 111 call centres and their linked urgent care centre(s) (UCCs; a total of 356 hours). Six focus groups were conducted with 47 call advisers, clinicians and organisational managers. An online survey was administered to call centre and UCC staff (n = 745) to ask their views about NHS 111; trust in NHS Pathways; and communication and information sharing (response rate: 41% for call centre staff, 35% for UCC staff). Results: Clinical assessment by call advisers is characterised by high levels of communication (including negotiation, communication and translation) and ‘emotion’ work, extending the work beyond simple operation of a CDSS. At most sites clinical advisers supported call advisers in clinical assessment but also played an important role in managing and sanctioning dispositions, notably emergency ambulance dispositions. Clinicians at UCCs have experienced a loss of control over their everyday work, which is now shaped by call centre workers. The Directory of Services, which provides information about locally available services, is key to delivering an integrated urgent care system. Trust in the CDSS is higher amongst call advisers than amongst clinical staff but there is widespread belief that the CDSS is risk averse. Staff often develop workarounds to ‘make the technology work’. There is considerable variation in how NHS 111 is organised and delivered, shaped by the organisational history and the professional culture of the organisations involved. Some sites were driven more by rationing and systemising, pursuing the NHS 111 vision of ‘right care, right place, right time’, whereas others were driven more by an ethos of what they perceived was a more patient-centred service. Conclusions: NHS 111 is primarily founded on a network of different organisations providing different aspects of the service. This network is primarily enabled through technological integration. Successful integration also requires understanding and trusting relationships between different providers, which were lacking in some sites. Underpinning NHS 111 with non-clinical workers offers significant opportunities for workforce reconfiguration, but this is not a simple substitution of labour (i.e. non-clinical staff replacing clinical staff). There is a significant organisational structure that is necessary to support and ‘keep in place’ both the CDSS itself and non-clinical workers using the CDSS. Funding: The National Institute for Health Research Health Services and Delivery Research programme.