Local festivals, social capital and sustainable destination development: experiences in East London

This paper explores the nature of social capital arising from engagement in local festivals and the implications of this for the social sustainability of an emerging destination. Two case studies are developed from a longitudinal research project which investigates local festivals staged in the Hackney Wick and Fish Island area adjacent to Queen Elizabeth Olympic Park in East London, UK between 2008 and 2014. This area has been directly affected by extensive development and regeneration efforts associated with the staging of the London 2012 Olympic Games. The two festivals considered here respond to the challenges and opportunities arising for local people as the area changes. One festival aims to foster a sense of community by creating shared experiences and improving communication across diverse groups. The other draws together the cultural community, links them to the opportunities arising as the area emerges as a destination, and attracts visitors. These festivals increase social capital in the area, but its distribution is very uneven. The accrual of social capital exacerbates existing inequalities within the host community, favouring the “haves” at the expense of the “have nots”. There are tensions between the development of social capital and social sustainability in this emerging destination.

Organisational and systems factors impacting on patient safety in acute care organisations: lessons from four multi-site research studies

Background Patient safety is concerned with preventable harm in healthcare, a subject that became a focus for study in the UK in the late 1990s. How to improve patient safety, presented both a practical and a research challenge in the early 2000s, leading to the eleven publications presented in this thesis. Research question The overarching research question was: What are the key organisational and systems factors that impact on patient safety, and how can these best be researched? Methods Research was conducted in over 40 acute care organisations in the UK and Europe between 2006 and 2013. The approaches included surveys, interviews, documentary analysis and non-participant observation. Two studies were longitudinal. Results The findings reveal the nature and extent of poor systems reliability and its effect on patient safety; the factors underpinning cases of patient harm; the cultural issues impacting on safety and quality; and the importance of a common language for quality and safety across an organisation. Across the publications, nine key organisational and systems factors emerged as important for patient safety improvement. These include leadership stability; data infrastructure; measurement capability; standardisation of clinical systems; and creating an open and fair collective culture where poor safety is challenged. Conclusions and contribution to knowledge The research presented in the publications has provided a more complete understanding of the organisation and systems factors underpinning safer healthcare. Lessons are drawn to inform methods for future research, including: how to define success in patient safety improvement studies; how to take into account external influences during longitudinal studies; and how to confirm meaning in multi-language research. Finally, recommendations for future research include assessing the support required to maintain a patient safety focus during periods of major change or austerity; the skills needed by healthcare leaders; and the implications of poor data infrastructure.

Longitudinal evaluation of quality of life in 288 patients with Neurofibromatosis 2

Advances in molecular biology have resulted in novel therapy for neurofibromatosis 2-related (NF2) tumours, highlighting the need for robust outcome measures. The disease-focused NF2 impact on quality of life (NFTI-QOL) patient questionnaire was assessed as an outcome measure for treatment in a multi-centre study. NFTI-QOL was related to clinician-rated severity (ClinSev) and genetic severity (GenSev) over repeated visits. Data were evaluated for 288 NF2 patients (n = 464 visits) attending the English national NF2 clinics from 2010 to 2012. The male-to-female ratio was equal and the mean age was 42.2 (SD 17.8) years. The analysis included NFTI-QOL eight-item score, ClinSev graded as mild, moderate, or severe, and GenSev as a rank order of the number of NF2 mutations (graded as mild, moderate, severe). The mean (SD) 8.7 (5.4) score for NFTI-QOL for either a first visit or all visits 9.2 (5.4) was similar to the published norm of 9.4 (5.5), with no significant relationships with age or gender. NFTI-QOL internal reliability was good, with a Cronbach’s alpha score of 0.85 and test re-test reliability r = 0.84. NFTI related to ClinSev (r = 0.41, p < 0.001; r = 0.46 for all visits), but weakly to GenSev (r = 0.16, p < 0.05; r = 0.15 for all visits). ClinSev related to GenSev (r = 0.41, p < 0.001; r = 0.42 for all visits). NFTI-QOL showed a good reliability and ability to detect significant longitudinal changes in the QOL of individuals. The moderate relationships of NFTI-QOL with clinician- and genetic-rated severity suggest that NFTI-QOL taps into NF2 patient experiences that are not encompassed by ClinSev rating or genotype.