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In 2016, England's National Institute for Health Research (NIHR) celebrated its tenth anniversary as an innovative national health research system with a focus on meeting patients' needs. This provides a good opportunity to reflect on how the creation of the NIHR has greatly enhanced important work, started in 1991, to develop a health research system in England that is embedded in the National Health Service.In 2004, WHO identified a range of functions that a national health research system should undertake to improve the health of populations. Health Research Policy and Systems (HRPS) has taken particular interest in the pioneering developments in the English health research system, where the comprehensive approach has covered most, if not all, of the functions identified by WHO. Furthermore, several significant recent developments in thinking about health research are relevant for the NIHR and have informed accounts of its achievements. These include recognition of the need to combat waste in health research, which had been identified as a global problem in successive papers in the Lancet, and an increasing emphasis on demonstrating impact. Here, pioneering evaluation of United Kingdom research, conducted through the impact case studies of the Research Excellence Framework, is particularly important. Analyses informed by these and other approaches identified many aspects of NIHR's progress in combating waste, building and sustaining research capacity, creating centres of research excellence linked to leading healthcare institutions, developing research networks, involving patients and others in identifying research needs, and producing and adopting research findings that are improving health outcomes.The NIHR's overall success, and an analysis of the remaining problems, might have lessons for other systems, notwithstanding important advances in many countries, as described in papers in HRPS and elsewhere. WHO's recently established Global Observatory for Health Research and Development provides an opportunity to promote some of these lessons. To inform its work, the Observatory is sponsoring a thematic series of papers in HRPS focusing on health research issues such as funding flows, priority setting, capacity building, utilisation and equity. While important papers on these have been published, this series is still open to new submissions. [ABSTRACT FROM AUTHOR]

Background: To increase the uptake of research evidence in practice, responsive research services have been developed within universities that broker access to academic expertise for practitioners and decision-makers. However, there has been little examination of the process of knowledge brokering within these services. This paper reflects on this process within the AskFuse service, which was launched in June 2013 by Fuse, the Centre for Translational Research in Public Health, in North East England. The paper outlines the challenges and opportunities faced by both academics and health practitioners collaborating through the service.Methods: The authors reflected on conversations between the AskFuse Research Manager and policy and practice partners accessing the service between June 2013 and March 2017. Summary notes of these conversations, including emails and documents relating to over 240 enquiries, have been analysed using an auto-ethnographic approach.Findings: We identified five challenges to knowledge brokering in an institutional service, namely length of brokerage time required, limits to collaboration, lack of resources, brokering research in a changing system, and multiple types of knowledge.Conclusions: To understand and overcome some of the identified challenges, we employ Goffman's dramaturgical perspective and argue for making better use of the distinction between front and back stages in the knowledge brokering process. We emphasise the importance of back stages for defusing destructive information that could discredit collaborative performances. [ABSTRACT FROM AUTHOR]

Background: Society is failing in its moral obligation to improve the standard of healthcare provided to vulnerable populations, such as people who lack decision making capacity, by a misguided paternalism that seeks to protect them by excluding them from medical research. Uncertainties surround the basis on which decisions about research participation is made under dual regulatory regimes, which adds further complexity. Vulnerable individuals' exclusion from research as a result of such regulation risks condemning such populations to poor quality care as a result of 'evidence biased' medicine.Main Text: This paper explores the research regulation provisions for proxy decision making for those unable to provide informed consent for themselves, and the subsequent legal and practical difficulties for decision-makers. There are two separate regulatory regimes governing research involving adults who lack capacity to consent in England and Wales. The Mental Capacity Act 2005 governs how incapacitated adults can be involved in research, however clinical trials of medicinal products are separately regulated by the Medicines for Human Use (Clinical Trials) Regulations 2004. There are significant differences under these dual regimes in the provisions for those lacking capacity to participate in medical research. The level of risk permitted differs, with a greater requirement for justification for participation in a clinical trial than other types of research. Who acts as proxy decision maker, how much information is provided to the person lacking capacity, and whether they retain the power of veto also significantly differs.Conclusion: The development of two separate regulatory regimes has resulted in significant differences between the provisions for clinical trials and other forms of research, and from usual medical practice. The resulting uncertainty has reinforced the tendency of those approving and conducting research to exclude adults lacking capacity to avoid difficult decisions about seeking consent for their participation. Future developments, such as the incoming EU Regulations, may address some of these differences, however the justification and level of risk permitted requires review to ensure that requirements are appropriate and proportionate to the burdens and risks for the individual, and also to the benefits for the wider population represented. [ABSTRACT FROM AUTHOR]

Background: The Public Health Responsibility Deal (RD) in England is a public-private partnership involving voluntary pledges between government, industry, and other organisations to improve public health by addressing alcohol, food, health at work, and physical activity. This paper analyses the RD physical activity (PA) pledges in terms of the evidence of their potential effectiveness, and the likelihood that they have motivated actions among organisations that would not otherwise have taken place. Methods: We systematically reviewed evidence of the effectiveness of interventions proposed in four PA pledges of the RD, namely, those on physical activity in the community; physical activity guidelines; active travel; and physical activity in the workplace. We then analysed publically available data on RD signatory organisations' plans and progress towards achieving the physical activity pledges, and assessed the extent to which activities among organisations could be attributed to the RD. Results: Where combined with environmental approaches, interventions such as mass media campaigns to communicate the benefits of physical activity, active travel in children and adults, and workplace-related interventions could in principle be effective, if fully implemented. However, most activities proposed by each PA pledge involved providing information or enabling choice, which has limited effectiveness. Moreover, it was difficult to establish the extent of implementation of pledges within organisations, given that progress reports were mostly unavailable, and, where provided, it was difficult to ascertain their relevance to the RD pledges. Finally, 15 % of interventions listed in organisations' delivery plans were judged to be the result of participation in the RD, meaning that most actions taken by organisations were likely already under way, regardless of the RD. Conclusions: Irrespective of the nature of a public health policy to encourage physical activity, targets need to be evidence-based, well-defined, measurable and encourage organisations to go beyond business as usual. RD physical activity targets do not adequately fulfill these criteria. [ABSTRACT FROM AUTHOR]

Background: Addressing health inequalities remains a prominent policy objective of the current UK government, but current NHS reforms involve a significant shift in roles and responsibilities. Clinicians are now placed at the heart of healthcare commissioning through which significant inequalities in access, uptake and impact of healthcare services must be addressed. Questions arise as to whether these new arrangements will help or hinder progress on health inequalities. This paper explores the perspectives of experienced healthcare professionals working within the commissioning arena; many of whom are likely to remain key actors in this unfolding scenario. Methods: Semi-structured interviews were conducted with 42 professionals involved with health and social care commissioning at national and local levels. These included representatives from the Department of Health, Primary Care Trusts, Strategic Health Authorities, Local Authorities, and third sector organisations. Results: In general, respondents lamented the lack of progress on health inequalities during the PCT commissioning era, where strong policy had not resulted in measurable improvements. However, there was concern that GP-led commissioning will fare little better, particularly in a time of reduced spending. Specific concerns centred on: reduced commitment to a health inequalities agenda; inadequate skills and loss of expertise; and weakened partnership working and engagement. There were more mixed opinions as to whether GP commissioners would be better able than their predecessors to challenge large provider trusts and shift spend towards prevention and early intervention, and whether GPs' clinical experience would support commissioning action on inequalities. Though largely pessimistic, respondents highlighted some opportunities, including the potential for greater accountability of healthcare commissioners to the public and more influential needs assessments via emergent Health & Wellbeing Boards. Conclusions: There is doubt about the ability of GP commissioners to take clearer action on health inequalities than PCTs have historically achieved. Key actors expect the contribution from commissioning to address health inequalities to become even more piecemeal in the new arrangements, as it will be dependent upon the interest and agency of particular individuals within the new commissioning groups to engage and influence a wider range of stakeholders. [ABSTRACT FROM AUTHOR]

Background: Non-communicable diseases are the leading cause of death in England, and poor diet and physical inactivity are two of the principle behavioural risk factors. In the context of increasingly constrained financial resources, decision makers in England need to be able to compare the potential costs and health outcomes of different public health policies aimed at improving these risk factors in order to know where to invest so that they can maximise population health. This paper describes PRIMEtime CE, a multistate life table cost-effectiveness model that can directly compare interventions affecting multiple disease outcomes.Methods: The multistate life table model, PRIMEtime Cost Effectiveness (PRIMEtime CE), is developed from the Preventable Risk Integrated ModEl (PRIME) and the PRIMEtime model. PRIMEtime CE uses routinely available data to estimate how changing diet and physical activity in England affects morbidity and mortality from heart disease, stroke, diabetes, liver disease, and cancers either directly or via raised blood pressure, cholesterol, and body weight.Results: Model outcomes are change in quality adjusted life years, and change in English National Health Service and social care costs.Conclusion: This paper describes PRIMEtime CE and highlights its main strengths and limitations. The model can be used to compare any number of public policies affecting diet and physical activity, allowing decision makers to understand how they can maximise population health with limited financial resources. [ABSTRACT FROM AUTHOR]

Background: There has been an increasing interest in the use of "real-world" data to inform care decision making that could lead to public health benefit. Routinely collected service and activity data associated with the administration of care services and service-users (such as electronic health records or electronic social care records), hold potential to better inform effective and responsive decision-making about health and care services provided to national and local populations. This study sought to gain an in-depth understanding regarding the potential to unlock real world data that was held in individual organisations, to better inform public health decision-making. This included sharing data between and within health service providers and local governing authorities, but also with university researchers to inform the evidence base. Methods: We used qualitative methods and carried out a series of online workshops and interviews with stakeholders (senior-level decision-makers and service leads, researchers, data analysts, those with a legal and governance role, and members of the public). We identified recurring themes in initial workshops, and explored these with participants in subsequent workshops. By this iterative process we further refined the themes identified, compared views and perceptions amongst different stakeholder groups, and developed recommendations for action. Results: Our study identified key elements of context and timing, the need for a different approach, and obstacles including governmental and legal, organisational features, and process factors which adversely affect the sharing of real world data. The findings also highlighted a need for improved communication about data for secondary uses to members of the public. Conclusion: The Covid-19 pandemic context and changes to organisational structures in the health service in England have provided opportunities to address data sharing challenges. Change at national and local level is required, within current job roles and generating new jobs roles focused on the use and sharing of real-world data. The study suggests that actions can be taken to unlock the potential of real-world data for public health benefit, and provides a series of recommendations at a national level, for organisational leaders, those in data roles and those in public engagement roles. [ABSTRACT FROM AUTHOR]

Background: Accurate calculation of hospital length of stay (LOS) from the English Hospital Episode Statistics (HES) is important for a wide range of audit and research purposes. The two methodologies which are commonly used to achieve this differ in their accuracy and complexity. We compare these methods and make recommendations on when each is most appropriate.Methods: We calculated LOS using continuous inpatient spells (CIPS), which link care spanning across multiple hospitals, and spells, which do not, for six conditions with short (dyspepsia or other stomach function, ENT infection), medium (dehydration and gastroenteritis, perforated or bleeding ulcer), and long (stroke, fractured proximal femur) average LOS. We examined how inter-area comparisons (i.e. benchmarking) and temporal trends differed. We defined a classification system for spells and explored the causes of differences.Results: Stroke LOS was 16.5 days using CIPS but 24% (95% CI: 23, 24) lower, at 12.6 days, using spells. Smaller differences existed for shorter-LOS conditions including dehydration and gastroenteritis (4.5 vs. 4.2 days) and ENT infection (0.9 vs. 0.8 days). Typical patient pathways differed markedly between areas and have evolved over time. One area had the third shortest stroke LOS (out of 151) using spells but the fourth longest using CIPS. These issues were most profound for stroke and fractured proximal femur, as patients were frequently transferred to a separate hospital for rehabilitation, however important disparities also existed for conditions with simpler secondary care pathways (e.g. ENT infections, dehydration and gastroenteritis).Conclusions: Spell-based LOS is widely used by researchers and national reporting organisations, including the Health and Social Care Information Centre, however it can substantially underestimate the time patients spend in hospital. A widespread shift to a CIPS methodology is required to improve the quality of LOS estimates and the robustness of research and benchmarking findings. This is vital when investigating clinical areas with typically long, complex patient pathways. Researchers should ensure that their LOS calculation methodology is fully described and explicitly acknowledge weaknesses when appropriate. [ABSTRACT FROM AUTHOR]

Background: The English health system experienced a large-scale reorganisation in April 2013. A national tri-partite delivery framework involving the Department of Health, NHS England and Public Health England was agreed and a new local operational model applied. Evidence about how health system re-organisations affect constituent public health programmes is sparse and focused on low and middle income countries. We conducted an in-depth analysis of how the English immunisation programme adapted to the April 2013 health system reorganisation, and what facilitated or hindered the delivery of immunisation services in this context.Methods: A qualitative case study methodology involving interviews and observations at national and local level was applied. Three sites were selected to represent different localities, varying levels of immunisation coverage and a range of changes in governance. Study participants included 19 national decision-makers and 56 local implementers. Two rounds of interviews and observations (immunisation board/committee meetings) occurred between December 2014 and June 2015, and September and December 2015. Interviews were audio recorded and transcribed verbatim and written accounts of observed events compiled. Data was imported into NVIVO 10 and analysed thematically.Results: The new immunisation programme in the new health system was described as fragmented, and significant effort was expended to regroup. National tripartite arrangements required joint working and accountability; a shift from the simpler hierarchical pre-reform structure, typical of many public health programmes. New local inter-organisational arrangements resulted in ambiguity about organisational responsibilities and hindered data-sharing. Whilst making immunisation managers responsible for larger areas supported equitable resource distribution and strengthened service commissioning, it also reduced their ability to apply clinical expertise, support and evaluate immunisation providers' performance. Partnership working helped staff adapt, but the complexity of the health system hindered the development of consistent approaches for training and service evaluation.Conclusion: The April 2013 health system reorganisation in England resulted in significant fragmentation in the way the immunisation programme was delivered. Some of this was a temporary by-product of organisational change, other more persistent challenges were intrinsic to the complex architecture of the new health system. Partnership working helped immunisation leaders and implementers reconnect and now the challenge is to assess how inter-agency collaboration can be strengthened. [ABSTRACT FROM AUTHOR]

Background: Colorectal cancer screening uptake within the South Asian population in England is approximately half that of the general population (33 % vs 61 %), and varies by Muslim (31.9 %), Sikh (34.6 %) and Hindu (43.7 %) faith background. This study sought to explore reasons for low uptake of CRC screening in South Asian communities and for the variability of low uptake between three faith communities; and to identify strategies by which uptake might be improved.Methods: We interviewed 16 'key informants' representing communities from the three largest South Asian faith backgrounds (Islam, Hinduism and Sikhism) in London, England.Results: Reasons for low colorectal cancer screening uptake were overwhelmingly shared across South Asian faith groups. These were: limitations posed by written English; limitations posed by any written language; reliance on younger family members; low awareness of colorectal cancer and screening; and difficulties associated with faeces. Non-written information delivered verbally and interactively within faith or community settings was preferred across faith communities.Conclusions: Efforts to increase accessibility to colorectal cancer screening in South Asian communities should use local language broadcasts on ethnic media and face-to-face approaches within community and faith settings to increase awareness of colorectal cancer and screening, and address challenges posed by written materials. [ABSTRACT FROM AUTHOR]

Background: There is limited evidence of the unmet needs and experiences of adults with Attention Deficit Hyperactivity Disorder (ADHD) in the published scientific literature. This study aimed to explore the experiences of adults in England with ADHD regarding access to diagnostic and treatment services, ADHD-related impairment and to compare experiences between patients diagnosed during adulthood and childhood. Methods: In this qualitative study, 30 adults with ADHD were recruited through an ADHD charity (n = 17) and two hospital outpatient clinics for adults with ADHD in England (n = 13). Half of the participants were diagnosed with ADHD during childhood or adolescence and the remainder during adulthood. Semi-structured interviews were conducted and data was analysed using a thematic approach based on Grounded Theory principles. Results: Analysis revealed five core themes: 'An uphill struggle': the challenge of accessing services, 'Accumulated Psychosocial Burden and the Impact of ADHD', 'Weighing up Costs vs. Benefits of ADHD Pharmacological Treatment', 'Value of Non-pharmacological Treatment' and arriers to Treatment Adherence'. Accessing services and the challenges associated with securing a definitive diagnosis of ADHD in adulthood was an 'uphill struggle', often due to sceptical and negative attitudes towards ADHD by healthcare professionals. ADHD-related impairment had an overwhelmingly chaotic impact on every aspect of patients' lives and many felt ill equipped to cope. A persistent sense of failure and missed potential from living with the impact of ADHD impairment had led to an accumulated psychosocial burden, especially among those diagnosed from late adolescence onwards. In contrast, positive adjustment was facilitated by a younger age at diagnosis. Although medication was perceived as necessary in alleviating impairment, many felt strongly that by itself, it was inadequate. Additional support in the form of psychological therapies or psycho-education was strongly desired. However, few patients had access to nonpharmacological treatment. In some, medication use was often inadequately monitored with little or no follow-up by healthcare professionals, leading to poor adherence and a sense of abandonment from the healthcare system. Conclusion: The findings suggest that the unmet needs of adults with ADHD are substantial and that there is a wide gap between policy and current practice in England. [ABSTRACT FROM AUTHOR]

Background: Unscheduled care is defined here as when someone seeks treatment or advice for a health problem without arranging to do so more than a day in advance. Recent health policy initiatives in England have focused on introducing new services such as NHS Direct and walk in centres into the unscheduled care system. This study used population surveys to explore the effect of these new services on the use of traditional providers of unscheduled care, and to improve understanding of help seeking behaviour within the system of unscheduled care. Methods: Cross-sectional population postal surveys were undertaken annually over the five year period 1998 to 2002 in two geographical areas in England. Each year questionnaires were sent to 5000 members of the general population in each area. Results: The response rate was 69% (33,602/48,883). Over the five year period 16% (5223/33602) 95%CI (15.9 to 16.1) of respondents had an unscheduled episode in the previous four weeks and this remained stable over time (p = 0.170). There was an increased use of telephone help lines over the five years, reflecting the change in service provision (p = 0.008). However, there was no change in use of traditional services over this time period. Respondents were most likely to seek help from general practitioners (GPs), family and friends, and pharmacists, used by 9.0%, 7.2% and 6.3% respectively of the 5815 respondents in 2002. Most episodes involved contact with a single service only: 7.0% (2363/33,602) of the population had one contact and 2% (662/33602) had three or more contacts per episode. GPs were the most frequent point of first contact with services. Conclusion: Introducing new services to the provision of unscheduled care did not affect the use of traditional services. A large majority of the population continued to turn to their GP for unscheduled health care. [ABSTRACT FROM AUTHOR]

Background: Public health interventions can be complicated, complex and context dependent, making the assessment of applicability challenging. Nevertheless, for them to be of use beyond the original study setting, they need to be generalisable to other settings and, crucially, research users need to be able to identify to which contexts it may be applicable. There are many tools with set criteria for assessing generalisability/applicability, yet few seem to be widely used and there is no consensus on which should be used, or when. This methodological study aimed to test these tools to assess how easy they were to use and how useful they appeared to be.Methods: We identified tools from an existing review and an update of its search. References were screened on pre-specified criteria. Included tools were tested by using them to assess the applicability of a Swedish weight management intervention to the English context. Researcher assessments and reflections on the usability and utility of the tools were gathered using a standard pro-forma.Results: Eleven tools were included. Their length, content, style and time required to complete varied. No tool was considered ideal for assessing applicability. Their limitations included unrealistic criteria (requiring unavailable information), a focus on implementation to the neglect of transferability (i.e. little focus on potential effectiveness in the new setting), overly broad criteria (associated with low reliability), and a lack of an explicit focus on how interventions worked (i.e. their mechanisms of action).Conclusion: Tools presenting criteria ready to be used may not be the best method for applicability assessments. They are likely to be either too long or incomplete, too focused on differences and fail to address elements that matter for the specific topic of interest. It is time to progress from developing lists of set criteria that are not widely used in the literature, to creating a new approach to applicability assessment. Focusing on mechanisms of action, rather than solely on characteristics, could be a useful approach, and one that remains underutilised in current tools. New approaches to assessing generalisability that evolve away from checklist style assessments need to be developed, tested, reported and discussed. [ABSTRACT FROM AUTHOR]

Background: Evidence of the effectiveness of social prescribing is inconclusive causing commissioning challenges. This research focusses on a social prescribing scheme in Northern England which deploys 'Wellbeing Coordinators' who offer support to individuals, providing advice on local groups and services in their community. The research sought to understand the outcomes of the service and, in addition, the processes which supported delivery.Methods: Quantitative data was gathered from service users at the point they entered the service and also at the point they exited. Qualitative interviews were also undertaken with service users to gather further understanding of the service and any positive or negative outcomes achieved. In addition, a focus group discussion was also conducted with members of social prescribing staff to ascertain their perspectives of the service both from an operational and strategic perspective.Results: In total, 342 participants provided complete wellbeing data at baseline and post stage and 26 semi-structured qualitative interviews were carried out. Improvements in participants' well-being, and perceived levels of health and social connectedness as well as reductions in anxiety was demonstrated. In many cases, the social prescribing service had enabled individuals to have a more positive and optimistic view of their life often through offering opportunities to engage in a range of hobbies and activities in the local community. The data on reductions in future access to primary care was inconclusive. Some evidence was found to show that men may have greater benefit from social prescribing than women. Some of the processes which increased the likelihood of success on the social prescribing scheme included the sustained and flexible relationship between the service user and the Wellbeing Coordinator and a strong and vibrant voluntary and community sector.Conclusions: Social prescribing has the potential to address the health and social needs of individuals and communities. This research has shown a range of positive outcomes as a result of service users engaging with the service. Social prescribing should be conceptualised as one way to support primary care and tackle unmet needs. [ABSTRACT FROM AUTHOR]

Background: The provision of high-quality maternity services is a priority for reducing inequalities in health outcomes for mothers and infants. Best practice includes women having their initial antenatal appointment within the first trimester of pregnancy in order to provide screening and support for healthy lifestyles, well-being and self-care in pregnancy. Previous research has identified inequalities in access to antenatal care, yet there is little evidence on interventions to improve early initiation of antenatal care. The Community REACH trial will assess the effectiveness and cost-effectiveness of engaging communities in the co-production and delivery of an intervention that addresses this issue.Methods/design: The study design is a matched cluster randomised controlled trial with integrated process and economic evaluations. The unit of randomisation is electoral ward. The intervention will be delivered in 10 wards; 10 comparator wards will have normal practice. The primary outcome is the proportion of pregnant women attending their antenatal booking appointment by the 12th completed week of pregnancy. This and a number of secondary outcomes will be assessed for cohorts of women (n = approximately 1450 per arm) who give birth 2-7 and 8-13 months after intervention delivery completion in the included wards, using routinely collected maternity data. Eight hospitals commissioned to provide maternity services in six NHS trusts in north and east London and Essex have been recruited to the study. These trusts will provide anonymised routine data for randomisation and outcomes analysis. The process evaluation will examine intervention implementation, acceptability, reach and possible causal pathways. The economic evaluation will use a cost-consequences analysis and decision model to evaluate the intervention. Targeted community engagement in the research process was a priority.Discussion: Community REACH aims to increase early initiation of antenatal care using an intervention that is co-produced and delivered by local communities. This pragmatic cluster randomised controlled trial, with integrated process and economic evaluation, aims to rigorously assess the effectiveness of this public health intervention, which is particularly complex due to the required combination of standardisation with local flexibility. It will also answer questions about scalability and generalisability.Trial Registration: ISRCTN registry: registration number 63066975 . Registered on 18 August 2015. [ABSTRACT FROM AUTHOR]