Paying clinicians to join clinical trials : a review of guidelines and interview study of trialists

Background: The motivations of clinicians to participate in clinical trials have been little studied. This project explored the potential role of payment for participation in publicly funded clinical trials in the UK. The aims were to review relevant guidelines and to collate and analyse views of clinical trialists on the role of payments and other factors that motivated clinicians to join clinical trials. Methods: Review of guidelines governing payments to clinicians for recruitment to trials. Semistructured interviews with a range of NHS clinical trial leaders, analysed using qualititative methods. Results: While UK guidelines had little to say specifically on payments linked to recruitment, all payments have become highly regulated and increasingly transparent. Interview participants believed that expenses arising from research should be covered. Payments in excess of expenses were seen as likely to increase participation but with the risk of reducing quality. Motivations such as interest in the topic, the scope for patients to benefit and intellectual curiosity were considered more important. Barriers to involvement included bureaucracy and lack of time. Discussion: Limited scope exists for paying clinicians over-and-above the cost of their time to be involved in research. Most trialists favour full payment of all expenses related to research. Conclusion: Payment of clinicians beyond expenses is perceived to be a less important motivating factor than researching important, salient questions, and facilitating research by reducing bureaucracy and delay

General practitioners’ perspectives on campaigns to promote rapid help-seeking behaviour at the onset of rheumatoid arthritis

Objective. To explore general practitioners’ (GPs’ ) perspectives on public health campaigns to encourage people with the early symptoms of rheumatoid arthritis (RA) to seek medical help rapidly. Design. Nineteen GPs participated in four semistructured focus groups. Focus groups were audio-recorded, transcribed verbatim, and analysed using thematic analysis. Results. GPs recognised the need for the early treatment of RA and identified that facilitating appropriate access to care was important. However, not all held the view that a delay in help seeking was a clinically significant issue. Furthermore, many were concerned that the early symptoms of RA were often non-specific, and that current knowledge about the nature of symptoms at disease onset was inadequate to inform the content of a help-seeking campaign. They argued that a campaign might not be able to specifically target those who need to present urgently. Poorly designed campaigns were suggested to have a negative impact on GPs’ workloads, and would “clog up” the referral pathway for genuine cases of RA. Conclusions. GPs were supportive of strategies to improve access to Rheumatological care and increase public awareness of RA symptoms. However, they have identified important issues that need to be considered in developing a public health campaign that forms part of an overall strategy to reduce time to treatment for patients with new onset RA. This study highlights the value of gaining GPs’ perspectives before launching health promotion campaigns

Young onset dementia: Public involvement in co-designing community-based support

Whilst the support requirements of people diagnosed with young onset dementia are well-documented, less is known about what needs to be in place to provide age-appropriate care. To understand priorities for service planning and commissioning and to inform the design of a future study of community-based service delivery models, we held two rounds of discussions with four groups of people affected by young onset dementia (n = 31) and interviewed memory services (n = 3) and non-profit service providers (n = 7) in two sites in England. Discussions confirmed published evidence on support requirements, but also reframed priorities for support and suggested new approaches to dementia care at the community level. This paper argues that involving people with young onset dementia in the assessment of research findings in terms of what is important to them, and inviting suggestions for solutions, provides a way for co-designing services that address the challenges of accessing support for people affected by young onset dementia

Homeward bound or bound for a home? Assessing the capacity of dementia patients to make decisions about hospital discharge: Comparing practice with legal standards

Background This article stems from a larger project which considers ways of improving assessments of capacity and judgements about best interests in connection with people with dementia admitted to acute hospitals with respect to decisions about place of residence. Aims Our aim is to comment on how assessments of residence capacity are actually performed on general hospital wards compared with legal standards for the assessment of capacity set out in the Mental Capacity Act, 2005 (MCA). Method Our findings are grounded in ethnographic ward-based observations and in-depth interviews conducted in three hospital wards, in two hospitals (acute and rehabilitation), within two NHS healthcare trusts in the North of England over a period of nine months between 2008 and 2009. Twenty-nine patient cases were recruited to the study. We also draw from broader conceptions of capacity found in domestic and international legal, medical, ethical and social science literature. Results Our findings suggest that whilst professionals profess to be familiar with broad legal standards governing the assessment of capacity under the MCA, these standards are not routinely applied in practice in general hospital settings when assessing capacity to decide place of residence on discharge from hospital. We discuss whether the criteria set out in the MCA and the guidance in its Code of Practice are sufficient when assessing residence capacity, given the particular ambiguities and complexities of this capacity. Conclusions We conclude by suggesting that more specific legal standards are required when assessing capacity in this particular context

Understanding innovators' experiences of barriers and facilitators in implementation and diffusion of healthcare service innovations: A qualitative study

This article is made available through the Brunel Open Access Publishing Fund - Copyright @ 2011 Barnett et al.Background: Healthcare service innovations are considered to play a pivotal role in improving organisational efficiency and responding effectively to healthcare needs. Nevertheless, healthcare organisations encounter major difficulties in sustaining and diffusing innovations, especially those which concern the organisation and delivery of healthcare services. The purpose of the present study was to explore how healthcare innovators of process-based initiatives perceived and made sense of factors that either facilitated or obstructed the innovation implementation and diffusion. Methods: A qualitative study was designed. Fifteen primary and secondary healthcare organisations in the UK, which had received health service awards for successfully generating and implementing service innovations, were studied. In-depth, semi structured interviews were conducted with the organisational representatives who conceived and led the development process. The data were recorded, transcribed and thematically analysed. Results: Four main themes were identified in the analysis of the data: the role of evidence, the function of inter-organisational partnerships, the influence of human-based resources, and the impact of contextual factors. "Hard" evidence operated as a proof of effectiveness, a means of dissemination and a pre-requisite for the initiation of innovation. Inter-organisational partnerships and people-based resources, such as champions, were considered an integral part of the process of developing, establishing and diffusing the innovations. Finally, contextual influences, both intra-organisational and extra-organisational were seen as critical in either impeding or facilitating innovators' efforts. Conclusions: A range of factors of different combinations and co-occurrence were pointed out by the innovators as they were reflecting on their experiences of implementing, stabilising and diffusing novel service initiatives. Even though the innovations studied were of various contents and originated from diverse organisational contexts, innovators' accounts converged to the significant role of the evidential base of success, the inter-personal and inter-organisational networks, and the inner and outer context. The innovators, operating themselves as important champions and being often willing to lead constructive efforts of implementation to different contexts, can contribute to the promulgation and spread of the novelties significantly.This research was supported financially by the Multidisciplinary Assessment of Technology Centre for Healthcare (MATCH)

Ocean-scale footprint of a highly mobile fishing fleet: Social-ecological drivers of fleet behaviour and evidence of illegal fishing.

Managing the footprint of highly mobile fishing fleets is increasingly important due to continuing declines in fish populations. However, social-ecological drivers for fisher behaviour remain poorly understood for many fleets globally. Using the Sri Lankan fleet as a case study, we explored the role of social, environmental and policy drivers of effort distribution and illegal fishing. We used semi-structured interviews and participatory mapping with 95 fishers, combined with explanatory modelling (GLM) and multivariate statistics, including principal component analysis (PCA). Our findings highlighted the broad footprint (~3,800,000 km2) of this fleet, with fishing effort expended in high seas (53.9%), domestic (40.9%) and, illegally, in foreign waters (5.2%). Twenty-six per cent of fishers directly admitted to fishing illegally in foreign waters during interviews, whereas 62% of fishers indicated doing so during participatory mapping. GLMs explained underlying decisions of where to fish (36% of the total deviance in effort distribution) as a function of social variables (14%), notably distance from landing sites (13%), and environmental variables (11%), notably sea surface temperature (10%). Multivariate analysis revealed that individual fisher characteristics associated with illegal fishing, such as a level of reliance on sharks, vary across the fleet. The analysis of qualitative data suggested that the influence of interpersonal and community social networks and perceptions of higher catch value, particularly of sharks, may be important. Our approach demonstrated the utility of mixed methods research, including the collection of qualitative data, for creating a detailed understanding of spatial behaviour, including decisions of whether to fish illegally. Results highlighted the importance of adopting a social-ecological lens to investigate drivers for human behaviour and non-compliance with rules. We advocate for a nuanced approach to monitoring and managing of fleets, including investigating localised social drivers for illegal fishing and enhancing regional transparency in fleet monitoring

Age-appropriate services for people diagnosed with young onset dementia (YOD): a systematic review.

BACKGROUND: Literature agrees that post-diagnostic services for people living with young onset dementia (YOD) need to be age-appropriate, but there is insufficient evidence of 'what works' to inform service design and delivery. OBJECTIVE: To provide an evidence base of age-appropriate services and to review the perceived effectiveness of current interventions. METHODS: We undertook a systematic review including all types of research relating to interventions for YOD. We searched PubMed, CINHAL Plus, SCOPUS, EBSCO Host EJS, Social Care Online and Google Scholar, hand-searched journals and carried out lateral searches (July-October 2016). Included papers were synthesised qualitatively. Primary studies were critically appraised. RESULTS: Twenty articles (peer-reviewed [n = 10], descriptive accounts [n = 10]) discussing 195 participants (persons diagnosed with YOD [n = 94], caregivers [n = 91] and other [n = 10]) were identified for inclusion. Services enabled people with YOD to remain living at home for longer. However, service continuity was compromised by short-term project-based commissioning and ad-hoc service delivery. CONCLUSION: The evidence on the experience of living with YOD is not matched by research and the innovation needed to mitigate the impact of YOD. The inclusion of people with YOD and their caregivers in service design is critical when planning support in order to delay institutional care

“I’ve Just Been Pretending I Can See This Stuff!”: Group Member Voice in Decision Making with a Hidden Profile

This research seeks to expand our knowledge of what underlies group performance in Hidden Profile decision tasks, adopting a mixed methods approach. We created a new mental simulation intervention designed to improve group decision outcomes and information exchange and tested it across two studies. We supplemented our quantitative statistical analysis with Thematic Analysis, to explore and better understand the motivations and utterances of individual group members, which we contend are key to increasing understanding of the challenges operating at individual and group levels in Hidden Profile decision tasks. Much group decision-making research uses quantitative methodologies, searching for causal explanations of why things happen as they do in group processes. As a subset of this area, existent Hidden Profile research is centred in the quantitative domain. Yet qualitative research can improve the understanding of group phenomena, such as communication style, which is important in groups’ decision-making. To our knowledge, no Hidden Profile research has taken a similar approach, so this paper makes a unique contribution. Results indicated the mental simulation had a positive effect on information exchange and decision quality in a Hidden Profile hiring task

What young people report about the personal characteristics needed for social science research after carrying out their own investigations in an after-school club

Several arguments have been put forward about the benefits of young people carrying out their own social science research in terms of empowering their voices and their participation. Much less attention has been paid to investigating the understandings young people develop about the research process itself. Seven twelve-year-olds carried out self-directed social science research into a topic of their choice. Towards the end of their six months experience we used a questionnaire and follow-up semi-structured interviews to investigate, from a socio-cultural perspective, what the young people thought about being a researcher. Thematic analysis of the interviews identified three themes and eight subthemes suggesting that they were aware of: the need to demonstrate researcher/research integrity (be thorough, truthful, orderly, and have a good understanding of research process); the need for good interpersonal skills and standards; and good self-management skills (be resilient, agentic, committed, and good at time management). We discuss how first-hand social science research experience might: be relevant to several areas of schooling; give young people experience of the personal characteristics important for success; help young people to realise that they can be social science researchers, and offer advanced and novel learning experiences outside the constraints of the school curriculum

Women’s expectations and experiences of maternity care in NSW - what women highlight as most important

Background Although surveys have identified that women are generally highly satisfied with maternity care provision, those aspects of care that women highlight as most important for achieving satisfaction and a satisfactory maternity care experience have not been reported. The aim of this study was to investigate how women understand and experience their maternity care and to report which aspects of care women highlight as most important. Methods This large qualitative study explored women’s expectations and experiences of maternity care provision. In-depth semi-structured interviews were conducted with 53 women experiencing maternity care in a range of tertiary, regional, rural, remote hospitals and midwife-led practices in the state of New South Wales, Australia during 2011 to 2012. Included in the interview schedule was the question ‘What 3 aspects would you see as most important for delivery of maternity care?’ Descriptive analyses of entire transcripts and responses to the question on most important aspects of care were undertaken. Results Descriptive analyses of women’s responses identified 5 important aspects of care: woman-focused care, staff qualities, systems and facilities, family-focused care and continuity of care/information. First-time mothers were more likely to identify woman-focused care, staff qualities and continuity of care/information as important 3 aspects than multiparous mothers. Urban and regional mothers highlighted staff qualities as having greater importance for satisfaction with their care while rural and particularly remote women nominated systems and facilities as important. Conclusions Our study showed that women from a range of settings are more concerned with staff and relational issues than facilities. Differences in perceptions among primiparous versus multiparous women, at different stages of pregnancy and among women from rural and remote compared to urban settings highlight the need to include women with a diversity of experience when trying to understand the aspects of maternity care most important to women