Patient access to complex chronic disease records on the internet

Background: Access to medical records on the Internet has been reported to be acceptable and popular with patients, although most published evaluations have been of primary care or office-based practice. We tested the feasibility and acceptability of making unscreened results and data from a complex chronic disease pathway (renal medicine) available to patients over the Internet in a project involving more than half of renal units in the UK. Methods: Content and presentation of the Renal PatientView (RPV) system was developed with patient groups. It was designed to receive information from multiple local information systems and to require minimal extra work in units. After piloting in 4 centres in 2005 it was made available more widely. Opinions were sought from both patients who enrolled and from those who did not in a paper survey, and from staff in an electronic survey. Anonymous data on enrolments and usage were extracted from the webserver. Results: By mid 2011 over 17,000 patients from 47 of the 75 renal units in the UK had registered. Users had a wide age range (<10 to >90 yrs) but were younger and had more years of education than non-users. They were enthusiastic about the concept, found it easy to use, and 80% felt it gave them a better understanding of their disease. The most common reason for not enrolling was being unaware of the system. A minority of patients had security concerns, and these were reduced after enrolling. Staff responses were also strongly positive. They reported that it aided patient concordance and disease management, and increased the quality of consultations with a neutral effect on consultation length. Neither patient nor staff responses suggested that RPV led to an overall increase in patient anxiety or to an increased burden on renal units beyond the time required to enrol each patient. Conclusions: Patient Internet access to secondary care records concerning a complex chronic disease is feasible and popular, providing an increased sense of empowerment and understanding, with no serious identified negative consequences. Security concerns were present but rarely prevented participation. These are powerful reasons to make this type of access more widely available

The political phenomenology of war reporting

Drawing on interviews with war correspondents, editors, political and military personnel, this article investigates the political dimension of the structuration and structuring effects of the reporter’s experience of journalism. Self-reflection and judgements about colleagues confirm that there are dominant norms for interpreting and acting in conflict scenarios which, while contingent upon socio-historical context, are interpreted as natural. But the prevalence of such codes masks the systematically misrecognized symbolic systems of mystification and ambivalence – systems which reproduce hierarchies and gatekeeping structures in the field, but which are either experienced as unremarkable, dismissed with irony and cynicism, or not present to the consciousness of the war correspondent. The article builds on recent theories of journalistic disposition, ideology, discourse and professionalism, and describes the political dimension of journalistic practice perceived in the field as apolitical. It addresses the gendering of war correspondence, the rise of the journalist as moral authority, and questions the extent to which respondent reflections can be defensibly analytically determined

Development for change.

Lifelong Learning Networks are concerned with bringing about change in the practices and the provision of higher education to address the issue of low progression through vocational, applied and work-based routes. MOVE Lifelong Learning Network has sought to create a step change in lifelong learning and maximise the vocational progression opportunities for individuals within the MOVE learner constituency in the East of England. This includes: those with vocational or applied qualifications at level three those qualifying through work-based learning routes return to study learners seeking entry into vocational programmes either directly or through Access to Higher Education provision This document describes how MOVE has strategically employed the use of development funding to generate a critical mass of curriculum and other development activity within the region to bring about the step change in provision that is required to meet the needs of these learners. The aim is to demonstrate how targeted funding can stimulate significant innovation in the way in which higher education is delivered, in the type and range of provision that is available and in the practices employed to promote and support progression to higher education. In addition, the document describes how such changes in provision can contribute to a more employer led approach to curriculum development. The text also includes a range of project case study examples to illustrate the qualitative impact of the development activity supported by MOVE

Strategies for improving mental health and wellbeing used by older people living with HIV: A qualitative investigation

Recent research into “successful ageing” and “resilience” in the context of ageing with HIV highlights older people living with HIV’s (OPLWH) adaptations and coping strategies hitherto neglected by early research’s emphasis on difficulties and challenges. Yet “resilience” and “successful ageing” are limited by their inconsistent definition, conflation of personal traits and coping strategies, normative dimension, and inattention to cultural variation and the distinctive nature of older age. This article thus adopts an interpretivist approach to how OPLWH manage the challenges to their mental health and wellbeing of ageing with HIV. Drawing on interviews with 76 OPLWH (aged 50+) living in the United Kingdom, we document both the strategies these participants use (for example, “accentuating the positive” and accessing external support) and the challenges to these strategies’ success posed by the need to manage their HIV’s social and clinical dimensions and prevent their HIV from dominating their lives. This points to (a) the complex overlaps between challenges to and strategies for improving or maintaining mental health and wellbeing in the context of ageing with HIV, and (b) the limitations of the “resilience” and “successful ageing” approaches to ageing with HIV. Ageing, HIV, resilience, successful ageing, mental health strategies, wellbeing, interpretivist approach

Characterization of spatial scaling relationships between vegetation pattern and topography at different directions in Gurbantunggut desert, China

Vegetation striped pattern is a common feature in semiarid and arid landscapes, which is seen as mosaics including vegetated and non-vegetated patches. Identifying scales of pattern in ecological systems and referring patterns to multi-scaled processes that create them are ongoing challenges. The aim of this paper is to study the vegetation patterns and their across-scale relationships between the vegetation and anisotropic topography (W-E and N-S) in 12 transects at Gurbantunggut desert. We used wavelet-based across-scale analysis for extracting information on scales of pattern for those transect data, evaluating their inherent structure, and inferring characteristics of the processes that imposed those patterns at across scales. The results show that, in W-E direction, the scales of vegetation pattern (C. ewersmanniana is at the scale 40 m, H. ammodendron, at 35 m) correspond to the dune ridge/dune valley sequences (appearing at distance of 40 m), and vegetation on mesoscale and large scale are significant cross-scale correlation with topography on mesoscale and large scale in all W-E transects. In N-S direction, there is an irregular pattern of vegetation along the N-S irregular topography, and no unified cross-scale relationships between topography and vegetation on different scales in different transects. Moreover, cross-scale correlation analysis between topography and vegetation provides further detail on hierarchical structure and specific scales in space that strongly influenced the larger patterns. Knowledge of the cross-scale relationships between topography and vegetation could lead to better understanding and management of biological resources in that region. (C) 2010 Elsevier B.V. All rights reserved

Dementia subtype and living well: results from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) study

This is the final version of the article. Available from BMC via the DOI in this record.The datasets generated and analysed during the current study are not publicly available due to the restrictions imposed in the original study but are available from the IDEAL study team on reasonable request.BACKGROUND: The heterogeneity of symptoms across dementia subtypes has important implications for clinical practice and dementia research. Variation in subtypes and associated symptoms may influence the capability to live well for people with dementia and carers. The aim of this study is to investigate the potential impact of dementia subtypes on the capability to live well for both people with dementia and their carers. METHODS: The analysis was based on the 1283 dyads of community-dwelling people with dementia and carers in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) project, a large cohort study in Great Britain. Capability to live well was defined using three measures: quality of life, life satisfaction and wellbeing. Structural equation modelling was used to investigate capability to live well in seven dementia subtypes: Alzheimer's disease (AD), Vascular dementia (VaD), mixed AD/VaD, frontotemporal dementia (FTD), Parkinson's disease dementia (PDD), Lewy body dementia (LBD) and unspecified/other, accounting for dyadic data structure and adjusting for age and sex, type of relationship between person with dementia and their carer and the number of chronic conditions. RESULTS: The major subtypes in this study population were AD (56%), VaD (11%) and mixed AD/VaD (21%). Compared to participants with AD, people with non-AD subtypes generally reported a lower capability to live well. Carers for people with PDD (- 1.71; 95% confidence interval (CI) - 3.24, - 0.18) and LBD (- 2.29; 95% CI - 3.84, - 0.75) also reported a lower capability to live well than carers for people with AD. After adjusting for demographic factors and comorbidity, PDD (- 4.28; 95% CI - 5.65, - 2.91) and LBD (- 3.76; 95% CI - 5.14, - 2.39) continued to have the strongest impact on both people with dementia and their carers. CONCLUSIONS: This study suggests a variation in capability to live well across dementia subtypes. It is important for care providers to consider different needs across subtypes. Health professionals who provide post-diagnostic support may need to pay more attention to the complex needs of people living with PDD and LBD and their carers.This work was supported by the Economic and Social Research Council (UK) and the National Institute for Health Research (UK) through grant ES/L001853/2 ‘Improving the experience of dementia and enhancing active life: living well with dementia’ (investigators: L. Clare, I.R. Jones, C. Victor, J.V. Hindle, R.W. Jones, M. Knapp, M. Kopelman, R. Litherland, A. Martyr, F.E. Matthews, R.G. Morris, S.M. Nelis, J. Pickett, C. Quinn, J. Rusted, J. Thom)

A neurophenomenological approach to non-ordinary states of consciousness: hypnosis, meditation, and psychedelics

No contemporary unifying framework has been provided for the study of non-ordinary states of consciousness (NSCs) despite increased interest in hypnosis, meditation, and psychedelics. NSCs induce shifts in experiential contents (what appears to the experiencer) and/or structure (how it appears). This can allow the investigation of the plastic and dynamic nature of experience from a multiscale perspective that includes mind, brain, body, and context. We propose a neurophenomenological (NP) approach to the study of NSCs which highlights their role as catalysts of transformation in clinical practice by refining our understanding of the relationships between experiential (subjective) and neural dynamics. We outline the ethical implications of the NP approach for standard conceptions of health and pathology as well as the crucial role of experience-based know-how in NSC-related research and application

Integrity in democratic politics

The complaint that many professional politicians lack integrity is common. However, it is unclear what such a judgement amounts to. Taking various codes of political ethics in the United Kingdom as my starting point, I examine the extent to which we can understand political integrity as a matter of politicians adhering to the obligations that official codes of ethics prescribe and, in a more general sense, the public-service ethos that underpins these codes. I argue that although this way of approaching the issue usefully draws our attention to an important class of positional duties that apply to politicians, commitment to principled political causes plays a further, indispensable role in coherent assessments of political integrity. In consequence, I claim that politicians of integrity succeed in furthering their deepest political commitments while avoiding malfeasance or misconduct. As such, the ascription of political integrity can often only be made when assessing a long train of action

Psychometric properties of the Iranian interview-administered version of the World Health Organization's Quality of Life Questionnaire (WHOQOL-BREF): A population-based study

<p>Abstract</p> <p>Background</p> <p>The objective of the current study was to translate and validate the Iranian version of the WHOQOL-BREF.</p> <p>Methods</p> <p>A forward-backward translation procedure was followed to develop the Iranian version of the questionnaire. A stratified random sample of individuals aged 18 and over completed the questionnaire in Tehran, Iran. Psychometric properties of the instrument including reliability (internal consistency, and test-retest analysis), validity (known groups' comparison and convergent validity), and items' correlation with their hypothesized domains were assessed.</p> <p>Results</p> <p>In all 1164 individuals entered into the study. The mean age of the participants was 36.6 (SD = 13.2) years, and the mean years of their formal education was 10.7 (SD = 4.4). In general the questionnaire received well and all domains met the minimum reliability standards (Cronbach's alpha and intra-class correlation > 0.7), except for social relationships (alpha = 0.55). Performing known groups' comparison analysis, the results indicated that the questionnaire discriminated well between subgroups of the study samples differing in their health status. Since the WHOQOL-BREF demonstrated statistically significant correlation with the Iranian version of the SF-36 as expected, the convergent validity of the questionnaire was found to be desirable. Correlation matrix also showed satisfactory results in all domains except for social relationships.</p> <p>Conclusion</p> <p>This study has provided some preliminary evidence of the reliability and validity of the WHOQOL-BREF to be used in Iran, though further research is required to challenge the problems of reliability in one of the dimensions and the instrument's factor structure.</p