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Background: Obtaining the necessary approvals and permission for clinical research requires successful negotiation of the ethical and R&D layers of the NHS. Differences in structure and governance frameworks feature between the constituent nations of the UK (England, Scotland, Wales and Northern Ireland), which adds complexity to cross-national studies. Difficulties in carrying out research in the NHS in the UK due to bureaucratic and time-consuming governance processes have led to the development of a new system of application and co-ordination from 2009. This paper illustrates how this new system fails to be consistent and streamlined and is unlikely to become so unless changes are made to the implementation and management of the governance processes. Methods: We present a case study of the research governance process at the survey stage of an investigation into the use, preferences and need for information by people making choices or decisions about health care. The method involved home-based, face-to-face interviewing in a questionnaire survey in relation to decisions about lymphoma treatment, Down's syndrome screening in pregnancy, and caring for people with dementia. Results: Our experience of the ethics stage was very positive, noting an efficient process of application and a speedy decision, both in relation to the initial application and to subsequent substantial amendments. By contrast, the R&D stages were very slow, most with unexplained delays, but some offering contradictory advice and exhibiting a lack of clear guidance and training for NHS staff. The R&D arrangements in Scotland were far quicker and more likely to be successful than in England. Overall, the delays were so severe that substantial parts of the research could not be delivered as planned within the funding timescale. Conclusions: If high-quality research in the NHS, particularly in England, is to be delivered in a timely and cost-effective way, R&D processes for gaining research governance approval need improvement. Attention is needed in process implementation and management, particularly in relation to staff training, as well as clarity in guidance and communication within and between organisations. [ABSTRACT FROM AUTHOR]

Background: Policymakers such as English healthcare commissioners are encouraged to adopt 'evidence-based policy-making', with 'evidence' defined by researchers as academic research. To learn how academic research can influence policy, researchers need to know more about commissioning, commissioners' information seeking behaviour and the role of research in their decisions.Methods: In case studies of four commissioning organisations, we interviewed 52 people including clinical and managerial commissioners, observed 14 commissioning meetings and collected documentation e.g. meeting minutes and reports. Using constant comparison, data were coded, summarised and analysed to facilitate cross case comparison.Results: The 'art of commissioning' entails juggling competing agendas, priorities, power relationships, demands and personal inclinations to build a persuasive, compelling case. Policymakers sought information to identify options, navigate ways through, justify decisions and convince others to approve and/or follow the suggested course. 'Evidence-based policy-making' usually meant pragmatic selection of 'evidence' such as best practice guidance, clinicians' and users' views of services and innovations from elsewhere. Inconclusive or negative research was unhelpful in developing policymaking plans and did not inform disinvestment decisions. Information was exchanged through conversations and stories, which were fast, flexible and suited the rapidly changing world of policymaking. Local data often trumped national or research-based evidence. Local evaluations were more useful than academic research.Discussion: Commissioners are highly pragmatic and will only use information that helps them create a compelling case for action.Therefore, researchers need to start producing more useful information.Conclusions: To influence policymakers' decisions, researchers need to 1) learn more about local policymakers' priorities 2) develop relationships of mutual benefit 3) use verbal instead of writtencommunication 4) work with intermediaries such as public health consultants and 5) co-produce local evaluations. [ABSTRACT FROM AUTHOR]

Background: Transgender, or trans, people experience a number of barriers to accessing gender-affirming healthcare and have a range of barriers and facilitators to primary care and specialist services, commonly citing discrimination and cisgenderism playing a central role in shaping accessibility. The pathway through primary care to specialist services is a particularly precarious time for trans people, and misinformation and poorly applied protocols can have a detrimental impact on wellbeing.Method: We recruited trans participants from an HIV Self-Testing Public Health Intervention (SELPHI) trial to interviews which explored contemporary gender-affirming service experiences, with an aim to examine the path from primary care services through to specialist gender services, in the UK.Results: A narrative synthesis of vignettes and thematic analysis of in-depth qualitative interviews were conducted with twenty trans individuals. We summarise positive and negative accounts of care under three broad categories: Experiences with primary care physicians, referrals to gender identity clinics (GICs), and experiences at GICs.Conclusions: We discuss implications of this research in terms of how to improve best practice for trans people attempting to access gender-affirming healthcare in the UK. Here we highlight the importance of GP's access to knowledge around pathways and protocols and clinical practice which treats trans patients holistically. [ABSTRACT FROM AUTHOR]

Background: The number of people affected by Parkinson's disease (PD) is increasing in the United Kingdom driven by population ageing. The treatment of the disease is complex, resource intensive and currently there is no known cure to PD. The National Health Service (NHS), the public organisation delivering healthcare in the UK, is under financial pressures. There is a need to find innovative ways to improve the operational and financial performance of treating PD patients. The use of community services is a new and promising way of providing treatment and care to PD patients at reduced cost than hospital care. The aim of this study is to evaluate the potential operational and financial benefits, which could be achieved through increased integration of community services in the delivery of treatment and care to PD patients in the UK without compromising care quality.Methods: A Discrete Event Simulation model was developed to represent the PD care structure including patients' pathways, treatment modes, and the mix of resources required to treat PD patients. The model was parametrised with data from a large NHS Trust in the UK and validated using information from the same trust. Four possible scenarios involving increased use of community services were simulated on the model.Results: Shifting more patients with PD from hospital treatment to community services will reduce the number of visits of PD patients to hospitals by about 25% and the number of PD doctors and nurses required to treat these patients by around 32%. Hospital based treatment costs overall should decrease by 26% leading to overall savings of 10% in the total cost of treating PD patients.Conclusions: The simulation model was useful in predicting the effects of increased use of community services on the performance of PD care delivery. Treatment policies need to reflect upon and formalise the use of community services and integrate these better in PD care. The advantages of community services need to be effectively shared with PD patients and carers to help inform management choices and care plans. [ABSTRACT FROM AUTHOR]

Background: All health care systems face the need to find the resources to meet new demands such as a new, cost-increasing health technology. In England and Wales, when a health technology is recommended by the National Institute for Health and Care Excellence (NICE), the National Health Service (NHS) is mandated to provide the funding to accommodate it within three months of publication of the recommendation. Identifying what, in practice, is foregone when new cost-increasing technologies are introduced is important for understanding the effects of health technology assessment (HTA) decisions on the NHS or any other health care system. Our objective was to investigate how in practice local NHS commissioners in Wales accommodated financial "shocks" arising from technology appraisals (TAs) issued by NICE and from other cost pressures.Methods: Semi-structured interviews were conducted with Finance Directors and Medical Directors from all seven Local Health Boards (LHBs) in NHS Wales. These interviews covered prioritisation processes, as well as methods of financing NICE TAs and other financial shocks at each LHB. We then undertook a systematic identification of themes and topics from the information recorded. The study relates to the period October 2010 to March 2013.Results: The financial impact of NICE TAs is generally anticipated and planned for in advance and the majority of LHBs have contingency funds available to cope with these and other financial shocks within-period. Efficiency savings (defined as reductions in costs with no assumed reductions in quality) were a source of funds for cost pressures of all kinds. Service displacements were not linkable to particular NICE TAs and there appears to be a general lack of explicit prioritisation activities. The Welsh Government has, on occasion, explicitly or implicitly acted as the funder of last resort.Conclusions: Services may be displaced as part of a response to the cumulative impact of all types of cost pressures, including cost-increasing health technologies recommended by NICE, but such displacements were not direct responses to the publication of individual NICE TAs. The additional cost pressure represented by a new NICE TA is likely to be accommodated at least partly by greater efficiency and increased expenditure rather than displacement of services. [ABSTRACT FROM AUTHOR]