User involvement in UK cancer services:bridging the policy gap

Recent UK government initiatives aim to increase user involvement in the National Health Service (NHS) in two ways: by encouraging service users to take an active role in making decisions about their own care; and by establishing opportunities for wider public participation in service development. The purpose of this study was to examine how UK cancer service users understand and relate to the concept of user involvement. The data were collected through in-depth interviews, which were analysed for content according to the principles of grounded theory. The results highlight the role of information and communication in effective user involvement. Perhaps more importantly, this study suggests that the concept of user involvement is unclear to many cancer service users. This paper argues the need for increased awareness and understanding of what user involvement is and how it can work.

Divided care and the Third Way:user involvement in statutory and voluntary sector cancer services

In health care, as in much of the public sphere, the voluntary sector is playing an increasingly large role in the funding, provision and delivery of services and nowhere is this more apparent than in cancer care. Simultaneously the growth of privatisation, marketisation and consumerism has engendered a rise in the promotion of 'user involvement' in health care. These changes in the organisation and delivery of health care, in part inspired by the 'Third Way' and the promotion of public and citizen participation, are particularly apparent in the British National Health Service. This paper presents initial findings from a three-year study of user involvement in cancer services. Using both case study and survey data, we explore the variation in the definition, aims, usefulness and mechanisms for involving users in the evaluation and development of cancer services across three Health Authorities in South West England. The findings have important implications for understanding shifts in power, autonomy and responsibility between patients, carers, clinicians and health service managers. The absence of any common definition of user involvement or its purpose underlines the limited trust between the different actors in the system and highlights the potentially negative impact of a Third Way health service.

Improving cancer services through patient involvement

This book provides a clear approach to establishing a user involvement system in a healthcare organisation and its potential impact on cancer services. Using a tool kit style approach, drawing on examples of successful past projects and case studies to provide evidence of good practice, it describes how to plan and implement different stages of user involvement, enabling organisations to draw on user experience and expertise to evaluate, develop and improve the quality of service that they provide. Members of regional cancer networks, multidisciplinary cancer care teams, and all those involved in the NHS cancer services will find this toolkit interesting reading.

Breast cancer teams:the impact of constitution, new cancer workload and methods of operation on their effectiveness

National guidance and clinical guidelines recommended multidisciplinary teams (MDTs) for cancer services in order to bring specialists in relevant disciplines together, ensure clinical decisions are fully informed, and to coordinate care effectively. However, the effectiveness of cancer teams was not previously evaluated systematically. A random sample of 72 breast cancer teams in England was studied (548 members in six core disciplines), stratified by region and caseload. Information about team constitution, processes, effectiveness, clinical performance, and members' mental well-being was gathered using appropriate instruments. Two input variables, team workload (P=0.009) and the proportion of breast care nurses (P=0.003), positively predicted overall clinical performance in multivariate analysis using a two-stage regression model. There were significant correlations between individual team inputs, team composition variables, and clinical performance. Some disciplines consistently perceived their team's effectiveness differently from the mean. Teams with shared leadership of their clinical decision-making were most effective. The mental well-being of team members appeared significantly better than in previous studies of cancer clinicians, the NHS, and the general population. This study established that team composition, working methods, and workloads are related to measures of effectiveness, including the quality of clinical care. © 2003 Cancer Research UK.

The professional role of breast cancer nurses in multi-disciplinary breast cancer care teams

Since the 1970s breast cancer services have witnessed considerable changes in the management of patients. One significant change was the introduction of specialist core personnel, including the breast care nurse (BCN). The role of the BCN has been gaining credence rapidly in the British NHS and this service is perhaps the paradigm of care for other services. With the lack of specific evidence of the role of specialist nurses in the breast care team, the current study aims to explore this area by in-depth interviews with core team members, and observations of 16 multi-disciplinary teams in England. The study explores the following themes: Nurses' unique informal management leadership role in ensuring the co-ordination, communication and planning of the team work; nurses' innovatory role in making the bureaucracy respond to patients and their relatives needs; nurses supportive role in the provision of expert advice and guidance to other members of the team; nurses confidence and humour in well-performing teams; and the limitations of the professional role of the breast cancer nurse. This study indicates that there is evidence that the BCN is practicing at an advanced level of practice. However, there is a severe lack of evidence-based description of that advanced practice. Cancer nurses including the BCNs should develop and participate in programmes of research in line with cancer legislation in order to build an evidence base that ultimately supports their unique role. © 2004 Elsevier Ltd. All rights reserved.

Prevalence of the use of cancer related self-tests by members of the public:A community survey

Background: Self-tests are those where an individual can obtain a result without recourse to a health professional, by getting a result immediately or by sending a sample to a laboratory that returns the result directly. Self-tests can be diagnostic, for disease monitoring, or both. There are currently tests for more than 20 different conditions available to the UK public, and self-testing is marketed as a way of alerting people to serious health problems so they can seek medical help. Almost nothing is known about the extent to which people self-test for cancer or why they do this. Self-tests for cancer could alter perceptions of risk and health behaviour, cause psychological morbidity and have a significant impact on the demand for healthcare. This study aims to gain an understanding of the frequency of self-testing for cancer and characteristics of users. Methods: Cross-sectional survey. Adults registered in participating general practices in the West Midlands Region, will be asked to complete a questionnaire that will collect socio-demographic information and basic data regarding previous and potential future use of self-test kits. The only exclusions will be people who the GP feels it would be inappropriate to send a questionnaire, for example because they are unable to give informed consent. Freepost envelopes will be included and non-responders will receive one reminder. Standardised prevalence rates will be estimated. Discussion: Cancer related self-tests, currently available from pharmacies or over the Internet, include faecal occult blood tests (related to bowel cancer), prostate specific antigen tests (related to prostate cancer), breast cancer kits (self examination guide) and haematuria tests (related to urinary tract cancers). The effect of an increase in self-testing for cancer is unknown but may be considerable: it may affect the delivery of population based screening programmes; empower patients or cause unnecessary anxiety; reduce costs on existing healthcare services or increase demand to investigate patients with positive test results. It is important that more is known about the characteristics of those who are using self-tests if we are to determine the potential impact on health services and the public. © 2006 Wilson et al; licensee BioMed Central Ltd.

WSRF-based modeling of clinical trial information for collaborative cancer research

The CancerGrid consortium is developing open-standards cancer informatics to address the challenges posed by modern cancer clinical trials. This paper presents the service-oriented software paradigm implemented in CancerGrid to derive clinical trial information management systems for collaborative cancer research across multiple institutions. Our proposal is founded on a combination of a clinical trial (meta)model and WSRF (Web Services Resource Framework), and is currently being evaluated for use in early phase trials. Although primarily targeted at cancer research, our approach is readily applicable to other areas for which a similar information model is available.

A study of patient-specific prognosis of ovarian cancer

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A pre-post test evaluation of the impact of the PELICAN MDT-TME development programme on the working lives of colorectal cancer team members

Background - The PELICAN Multidisciplinary Team Total Mesorectal Excision (MDT-TME) Development Programme aimed to improve clinical outcomes for rectal cancer by educating colorectal cancer teams in precision surgery and related aspects of multidisciplinary care. The Programme reached almost all colorectal cancer teams across England. We took the opportunity to assess the impact of participating in this novel team-based Development Programme on the working lives of colorectal cancer team members. Methods - The impact of participating in the programme on team members' self-reported job stress, job satisfaction and team performance was assessed in a pre-post course study. 333/568 (59%) team members, from the 75 multidisciplinary teams who attended the final year of the Programme, completed questionnaires pre-course, and 6-8 weeks post-course. Results - Across all team members, the main sources of job satisfaction related to working in multidisciplinary teams; whilst feeling overloaded was the main source of job stress. Surgeons and clinical nurse specialists reported higher levels of job satisfaction than team members who do not provide direct patient care, whilst MDT coordinators reported the lowest levels of job satisfaction and job stress. Both job stress and satisfaction decreased after participating in the Programme for all team members. There was a small improvement in team performance. Conclusions - Participation in the Development Programme had a mixed impact on the working lives of team members in the immediate aftermath of attending. The decrease in team members' job stress may reflect the improved knowledge and skills conferred by the Programme. The decrease in job satisfaction may be the consequence of being unable to apply these skills immediately in clinical practice because of a lack of required infrastructure and/or equipment. In addition, whilst the Programme raised awareness of the challenges of teamworking, a greater focus on tackling these issues may have improved working lives further.

Survival prognosis in ovarian cancer

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Nutritional aspects of cancer

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Investigation of a binding model for anti-cancer cyclohexadienones by computational chemistry and crystallography

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Developing user involvement in a UK cancer network:professionals’ and users’ perspectives

This paper explores the results of a consensus development exercise that explored diverse perspectives and sought to identify key principles for the development of user involvement in a cancer network. The exercise took place within one of 34 UK cancer networks and was a collaboration between the NHS, two universities and two voluntary sector organizations. The paper explores professionals’ and users’ perspectives on user involvement with reference to the current sociopolitical context of user participation. British policy documents have placed increasing emphasis on issues of patient and public participation in the evaluation and development of health services, and the issue of lay participation represents an important aspect of a critical public health agenda. The project presented here shows that developing user involvement may be a complex task, with lack of consensus on key issues representing a significant barrier. Further, the data suggest that professional responses can partly be understood in relation to specific occupational standpoints and strategies that potentially allow professionals to define and limit users’ involvement. The implications of these findings and the impact of the consensus development process itself are discussed.