Understanding stakeholder requirements on an NHS hospital project: application of semiotics-rooted theories.

Hospitals represent complex and difficult contexts for AEC (architecture, engineering and construction) professionals to engage with due to their functional complexity and diversity of stakeholder interests (i.e. patient, visitor, medical specialist). Hospital designers need to take note of changing NHS policy contexts (e.g. the possible empowerment of general practitioners to shape services), technological advances in medical equipment design and the potential health needs of future generations. It is imperative for hospital designers and architects to align their processes and methodologies (e.g. briefing and requirements capture) to the needs and desires of their clients so that a medical facility design is produced which is truly aligned to the requirements of the hospital stakeholders. Semiotics, the “study” or “discipline” of signs aims to investigate the nature of signs (their inception, representation and meaning), whilst semiotics-rooted theories are concerned with investigating how meaning and understanding is mobilized between persons and between organisations. This paper details a semiotics-rooted research approach for investigating the interactions between hospital designers and stakeholders on a forthcoming NHS hospital project in the UK. A semiotics grounded study will potentially provide a deeper understanding of how meaning and understanding is established between hospital project stakeholders and construction professionals.

Impact of Huntington's across the entire disease spectrum: the phases and stages of disease from the patient perspective

Although Huntington's disease (HD) is a neurodegenerative disease characterized by motor, cognitive and behavioural disturbances, there has been little empirical data examining what patients are most concerned about throughout the different stages of disease, which can span many years. Semi-structured face-to-face interviews were individually conducted with 31 people living with different stages of Huntington's, from pre-clinical gene carriers to advanced stage. We examined how often participants raised issues and concerns regarding the impact of Huntington's on everyday life. The Physical/functional theme hardly featured pre-clinically, but was strongly present from Stage 1, rose steadily and peaked at Stage 5. There were no significant changes between stages for the Emotional, Social, and Self themes that all featured across all stages, indicating that these issues were not raised more frequently over the course of the disease. Likewise, the more rarely mentioned Financial and Legal themes also remained similar across stages. However, the Cognitive theme only featured between Stages 1 and 4, and hardly at all pre-clinically and at Stage 5. These findings provide insight into patients' important and unique perspective and have implications for the management and development of interventions across the spectrum of HD stages.

Health-related quality of life in Huntington’s Disease patients: a comparison of proxy assessment and patient self-rating using the disease-specific Huntington’s Disease health-related quality of life questionnaire (HDQoL)

Huntington’s disease (HD) is a fatal, neurodegenerative disease for which there is no known cure. Proxy evaluation is relevant for HD as its manifestation might limit the ability of persons to report their health-related quality of life (HrQoL). This study explored patient–proxy ratings of HrQoL of persons at different stages of HD, and examined factors that may affect proxy ratings. A total of 105 patient–proxy pairs completed the Huntington’s disease health-related quality of life questionnaire (HDQoL) and other established HrQoL measures (EQ-5D and SF-12v2). Proxy–patient agreement was assessed in terms of absolute level (mean ratings) and intraclass correlation. Proxies’ ratings were at a similar level to patients’ self-ratings on an overall Summary Score and on most of the six Specific Scales of the HDQoL. On the Specific Hopes and Worries Scale, proxies on average rated HrQoL as better than patients’ self-ratings, while on both the Specific Cognitive Scale and Specific Physical and Functional Scale proxies tended to rate HrQoL more poorly than patients themselves. The patient’s disease stage and mental wellbeing (SF-12 Mental Component scale) were the two factors that primarily affected proxy assessment. Proxy scores were strongly correlated with patients’ self-ratings of HrQoL, on the Summary Scale and all Specific Scales. The patient–proxy correlation was lower for patients at moderate stages of HD compared to patients at early and advanced stages. The proxy report version of the HDQoL is a useful complementary tool to self-assessment, and a promising alternative when individual patients with advanced HD are unable to self-report.

General care of the older cancer patient.

With increasing age, there are greater numbers of older people who will be diagnosed with cancer. It must be remembered that such individuals have increased frailty and have a number of geriatric syndromes and conditions particularly pertinent to older age, including incontinence, poor cognition and impaired nutrition. It is often difficult to define the effects of cancer and its treatment or complications, and separate these from the effects of normal ageing and geriatric syndromes. The documentation of poor nutrition and its management must combine knowledge from both geriatric medicine and oncology. Nutrition serves to identify key healthcare professionals who are all essential in any patient at risk or suffering from malnutrition. Incontinence must be actively sought, its cause identified and efforts made to either 'cure' it or, in certain circumstances, 'manage' it. Older patients with cancer are cared for predominantly by older relations and informal care mechanisms and special consideration of their physical and practical needs are paramount. In this area, nurses, doctors, therapists and social workers should work to identify formal and informal mechanisms to support particularly the older carer.

Treatment of the elderly colorectal cancer patient: SIOG expert recommendations.

Colorectal cancer (CRC) is one of the commonest malignancies of Western countries, with approximately half the incidence occurring in patients >70 years of age. Elderly CRC patients, however, are understaged, undertreated and underrepresented in clinical trials. The International Society of Geriatric Oncology created a task force with a view to assessing the potential for developing guidelines for the treatment of elderly (geriatric) CRC patients. A review of the evidence presented by the task force members confirmed the paucity of clinical trial data in elderly people and the lack of evidence-based guidelines. However, recommendations have been proposed on the basis of the available data and on the emerging evidence that treatment outcomes for fit, elderly CRC patients can be similar to those of younger patients. It is hoped that these will pave the way for formal treatment guidelines based upon solid scientific evidence in the future.

Effect of patient age on management decisions in breast cancer: consensus from a national consultation

This qualitative study investigated the attitudes, perceptions, and practices of breast cancer specialists with reference to the effect of patient age on management decisions in breast cancer, and attempted to identify national consensus on this issue. One hundred thirty-three relevant specialists, including 75 surgeons and 43 oncologists, participated in a virtual consultation using e-mailed questionnaires and open-ended discussion documents, culminating in the development of proposed consensus statements sent to participants for validation. A strong consensus was seen in favor of incorporating minimum standards of diagnostic services, treatment, and care for older patients with breast cancer into relevant national guidance, endorsed by professional bodies. Similarly, an overwhelming majority of participants agreed that simple, evidence-based protocols or guidelines on standardizing assessment of biological and chronological age should be produced by the National Institute for Health and Clinical Excellence and the Scottish Medicines Consortium, developed in collaboration with specialist oncogeriatricians, and endorsed by professional bodies. A further recommendation that all breast cancer patient treatment and diagnostic procedures be undertaken in light of up-to-date, relevant scientific data met with majority support. This study was successful in gauging national specialist opinion regarding the effect of patient age on management decisions in breast cancer in the U.K.

System dynamics mapping of acute patient flows

Department of Health staff wished to use systems modelling to discuss acute patient flows with groups of NHS staff. The aim was to assess the usefulness of system dynamics (SD) in a healthcare context and to elicit proposals concerning ways of improving patient experience. Since time restrictions excluded simulation modelling, a hybrid approach using stock/flow symbols from SD was created. Initial interviews and hospital site visits generated a series of stock/flow maps. A ‘Conceptual Framework’ was then created to introduce the mapping symbols and to generate a series of questions about different patient paths and what might speed or slow patient flows. These materials formed the centre of three workshops for NHS staff. The participants were able to propose ideas for improving patient flows and the elicited data was subsequently employed to create a finalized suite of maps of a general acute hospital. The maps and ideas were communicated back to the Department of Health and subsequently assisted the work of the Modernization Agency.

Are clinical documents optimised for patient safety? A critical analysis of patient safety outcomes using the EDA error model

Iatrogenic errors and patient safety in clinical processes are an increasing concern. The quality of process information in hardcopy or electronic form can heavily influence clinical behaviour and decision making errors. Little work has been undertaken to assess the safety impact of clinical process planning documents guiding the clinical actions and decisions. This paper investigates the clinical process documents used in elective surgery and their impact on latent and active clinical errors. Eight clinicians from a large health trust underwent extensive semi- structured interviews to understand their use of clinical documents, and their perceived impact on errors and patient safety. Samples of the key types of document used were analysed. Theories of latent organisational and active errors from the literature were combined with the EDA semiotics model of behaviour and decision making to propose the EDA Error Model. This model enabled us to identify perceptual, evaluation, knowledge and action error types and approaches to reducing their causes. The EDA error model was then used to analyse sample documents and identify error sources and controls. Types of knowledge artefact structures used in the documents were identified and assessed in terms of safety impact. This approach was combined with analysis of the questionnaire findings using existing error knowledge from the literature. The results identified a number of document and knowledge artefact issues that give rise to latent and active errors and also issues concerning medical culture and teamwork together with recommendations for further work.

Tactical ethics: how the discourses of fairtrade and black economic empowerment change and interact in wine networks from South Africa to the UK.

This paper explores the spaces and power relations of ethical foodscapes. Ethics can offer a commodity a valuable unique selling point in a competitive marketplace but managing the changeable and multiple motivations for stakeholder participation throughout the commodity chain in order to utilise this opportunity is a complex negotiation. Through exploring the spaces and relations within three South African– UK ethical wine networks, the discursive tactics used to sustain these are uncovered. The discourses of Fairtrade, Black Economic Empowerment and organics are highly adaptive, interacting with each other in such a way as to always be contextually appealing. This ‘tactical mutability’ is combined with ‘scales of knowing’, which, this paper argues, are essential for network durability. ‘Scales of knowing’ refers to the recognition by stakeholders of the potential for different articulations of a discourse within the network, which combines with ‘tactical mutability’ to allow for a scalar, contextual and ’knowing’ (im)mutability to ensure the discourse’s continued appeal. However, even when one discourse is the ‘lead’ it always folds within it linkages to other ethical discourses at work, suggesting that ethical practice is mutually supportive discursively. This means that at the producer end ethical interactions may offer more capacity to enact genuine transformation than the solo operations of a discourse.

Privatisation, empowerment and accountability: What are the policy implications for establishing effective farmer organisations?

Weak institutional development and information flows have constrained the extent to which the small-holder farming sector in developing countries can significantly drive growth and poverty reduction. Thisis despite widely implemented economic liberalisation policies focussing on market efficiency. Farmerorganisations are viewed as a potential means of addressing public and private institutional failure but thishas frequently been limited by inequalities in access to power and information. This article investigatestwo issues that have received little research attention to date: what role downward accountability plays inenabling farmer organisations to improve services and markets, and what influences the extent to whichdownward accountability is achieved. Kenya Tea Development Agency (KTDA), one of the largest farmerorganisations in the world (>400,000 farmers) is examined alongside wider literature. Mixed methodswere used including key informant interviews, and eight months of participant observation followedby a questionnaire survey. The article concludes that without effective downward accountability farmerorganisations can become characterised by institutions and mechanisms that favour elites, restrictedweak coordination and regulation, and manipulated information flows. This in turn reduces individuals’incentives to invest. If farmer organisations are to realise their potential as a means of enabling the small-holder sector to significantly contribute to economic growth and poverty reduction, policy and researchneeds to address key factors which influence accountability including: how to ensure initial processes information of farmer organisations establish appropriate structures and rules; strong state regulation toenhance corporate accountability; transparent information provision regarding actions of farmer organi-sation leaders; and the role independent non-government organisations can play. Consequently attentionneeds to focus on developing means of legitimising rights, building poor people’s capacity to challengeexclusion, and moving from rights to obligations regarding information provision.