Charting Complex Changes: Application of the eHealth Implementation Toolkit (e-HIT) in the Delivering Assisted Living Lifestyles at Scale (dallas) Programme

The 'dallas' (Delivering Assisted Living Lifestyles at Scale) programme is a UK-wide digital healthcare initiative that has been designed to support independent living, enhance preventative care, and improve lifestyles by harnessing the potential of e-health technologies and digital services. This short paper presents a brief update on one strand of the University of Glasgow evaluation of the dallas programme. We have used the e-Health Implementation Toolkit (e-HIT) to investigate processes involved in the implementation of e-health tools and digital services being developed and deployed across the dallas communities and to assess 'distance travelled' by communities from baseline to midpoint of a three year programme. Qualitative data analysis was guided by the Normalisation Process Theory (NPT) and Framework Analysis. The e-HIT scores indicated that the dallas communities had underestimated the amount of work involved in implementing at scale. Qualitative data analysis showed that communities have successfully navigated barriers in order to make significant progress in strategic areas, including the development of new models of partnership working resulting in brand recognition and agile service design. The dallas communities are now sharing lessons learned and generating new professional knowledge, skills and understanding across several key strategic areas required for operationalising the implementation of e-health technologies and digital services at scale. The new knowledge being generated through the dallas programme will contribute to the ongoing transformation of digitally enabled healthcare based on more personalised flexible models of provision which resonates with the current e-health policy environment

Mechanisms and context in the San Patrignano drug recovery community, Italy: a qualitative study to inform transfer to Scotland

The San Patrignano drug recovery community, Italy, is regarded as one of the most successful in the world. However, if this model is to be transferred to other countries, it is necessary to clarify its underlying mechanisms and how far their success is context dependent. This qualitative study investigated these features of the San Patrignano model. Data collection included semi-structured interviews with six key stakeholders and 10 days’ observational field notes. Data were synthesised using frameworks and analysis was informed by realist principles. Individual level mechanisms include: commitment to change, removal from former social environment, communal living, peer mentor with lived experience and meaningful work. These operate in the context of a free of charge, long term (3–4 year) residential community. Organisational level mechanisms are: visionary leadership, staff dedication, social enterprise and adaptable learning. Organisational contextual factors include: a gap in suitable provision for drug recovery and the region’s high level of social capital. Articulating the programme theory of the recovery model and its contextual dependency helps clarify which elements should be transferred and how far they need to be adapted for different socio-cultural settings. The recognition of context is crucial when considering transfer of effective complex interventions across countries

Inter-Life: a novel, three-dimensional, virtual learning environment for life transition skills learning

Devlin, A., Lally, V., Sclater, M., and Parussel, K. Keywords: Inter-Life; transition skills learning; 3-dimensional virtual learning environment; social constructivism Introduction The present study details a novel approach to life transition skills learning using Inter-Life, which is a novel technology enhanced, three-dimensional, immersive virtual learning environment. The Inter-Life research project is an interdisciplinary project funded by the EPSRC/ESRC Teaching and Learning Research Programme technology-enhanced learning (TEL) phase (http://www.tlrp.org/tel/) in the U

Inter-Life: a novel, three-dimensional, virtual learning environment for life transition skills learning

This paper presents the findings from one of the first empirical research studies which has investigated the impact of Inter-Life; a novel three-dimensional immersive virtual learning environment, on learning and development of social and educational life transition skills in a group of looked after and accommodated children. Drawing on social constructivism in which meaningful learning is related to context and situated in practice, we report on a series of Inter-Life workshops that enabled young people to work together and through the processes of participation in authentic learning activities contributed to the development of life transition skills such as self-confidence, empathy, negotiation and mediation skills, teamwork and active problem-solving skills. The novel affordances of the Inter-Life virtual world which contributed to the development of the learning community included the ability to personalise learner engagement and activities from the outset along with ‘co-presence’ and ‘immersion’ and the flexibility provided by the innovative, technology-enhanced Inter-Life platform. This study presents some empirical evidence to demonstrate the efficacy of new models of learning that are mediated by innovative malleable technologies that can be shaped by the learner in a participatory manner

Microsatellite alteration and immunohistochemical expression profile of chromosome 9p21 in patients with sporadic renal cell carcinoma following surgical resection.

BACKGROUND: Long-term prognostic significance of loss of heterozygosity on chromosome 9p21 for localized renal cell carcinoma following surgery remains unreported. The study assessed the frequency of deletions of different loci of chromosome 9p along with immunohistochemical profile of proteins in surgically resected renal cancer tissue and correlated this with long-term outcomes. METHODS: DNA was extracted from renal tumours and corresponding normal kidney tissues in prospectively collected samples of 108 patients who underwent surgical resection for clinically localized disease between January 2001 and December 2005, providing a minimum of 9 years follow-up for each participant. After checking quality of DNA, amplified by PCR, loss of heterozygosity (LOH) on chromosome 9p was assessed using 6 microsatellite markers in 77 clear cell carcinoma. Only 5 of the markers showed LOH (D9S1814, D9S916, D9S974, D9S942, and D9S171). Protein expression of p15(INK4b), p16(INK4a), p14(ARF), CAIX, and adipose related protein (ADFP) were demonstrated by immunostaining in normal and cancer tissues. Loss of heterozygosity for microsatellite analysis was correlated with tumour characteristics, recurrence free, cancer specific, and overall survival, including significance of immunohistochemical profile of protein expressions. RESULTS: The main deletion was found at loci telomeric to CDKN2A region at D9S916. There was a significant correlation between frequency of LOH stage (p = 0.005) and metastases (p = 0.006) suggesting a higher LOH for advanced and aggressive renal cell carcinoma. Most commonly observed LOH in the 3 markers: D9S916, D9S974, and D9S942 were associated with poor survival, and were statistically significant on multivariate analysis. Immunohistochemical expression of p14, p15, and p16 proteins were either low or absent in cancer tissue compared to normal. CONCLUSIONS: Loss of heterozygosity of p921 chromosome is associated with aggressive tumours, and predicts cancer specific or recurrence free survival on long-term follow-up. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12885-016-2514-8) contains supplementary material, which is available to authorized users

Health-related quality of life and a cost-utility simulation of adults in the UK with osteogenesis imperfecta, X-linked hypophosphatemia and fibrous dysplasia.

BACKGROUND: Health-related quality of life of adults with osteogenesis imperfecta (OI), fibrous dysplasia (FD) and X-linked hypophosphatemia (XLH) remains poorly described. The aim of this study was to describe the HRQoL of adults with osteogenesis imperfecta, fibrous dysplasia and X-linked hypophophataemia and perform a cost-utility simulation to calculate the maximum cost that a health care system would be willing to pay for a hypothetical treatment of a rare bone disease. RESULTS: Participants completed the EQ-5D-5 L questionnaire between September 2014 and March 2016. For the economic simulation, we considered a hypothetical treatment that would be applied to OI participants in the lower tertile of the health utility score. A total of 109 study participants fully completed the EQ-5D-5 L questionnaire (response rate 63%). Pain/discomfort was the most problematic domain for participants with all three diseases (FD 31%, XLH 25%, OI 16%). The economic simulation identified an expected treatment impact of +2.5 QALYs gained per person during the 10-year period, which led to a willing to pay of £14,355 annually for a health care system willing to pay up to £50,000 for each additional QALY gained by an intervention. CONCLUSIONS: This is the first study to quantitatively measure and compare the HRQoL of adults with OI, FD and XLH and the first to use such data to conduct an economic simulation leading to healthcare system willingness-to-pay estimates for treatment of musculoskeletal rare diseases at various cost-effectiveness thresholds

Genome-Wide Association Study and Gene Expression Analysis Identifies CD84 as a Predictor of Response to Etanercept Therapy in Rheumatoid Arthritis

Anti-tumor necrosis factor alpha (anti-TNF) biologic therapy is a widely used treatment for rheumatoid arthritis (RA). It is unknown why some RA patients fail to respond adequately to anti-TNF therapy, which limits the development of clinical biomarkers to predict response or new drugs to target refractory cases. To understand the biological basis of response to anti-TNF therapy, we conducted a genome-wide association study (GWAS) meta-analysis of more than 2 million common variants in 2,706 RA patients from 13 different collections. Patients were treated with one of three anti-TNF medications: etanercept (n = 733), infliximab (n = 894), or adalimumab (n = 1,071). We identified a SNP (rs6427528) at the 1q23 locus that was associated with change in disease activity score (ΔDAS) in the etanercept subset of patients (P = 8×10-8), but not in the infliximab or adalimumab subsets (P>0.05). The SNP is predicted to disrupt transcription factor binding site motifs in the 3′ UTR of an immune-related gene, CD84, and the allele associated with better response to etanercept was associated with higher CD84 gene expression in peripheral blood mononuclear cells (P = 1×10-11 in 228 non-RA patients and P = 0.004 in 132 RA patients). Consistent with the genetic findings, higher CD84 gene expression correlated with lower cross-sectional DAS (P = 0.02, n = 210) and showed a non-significant trend for better ΔDAS in a subset of RA patients with gene expression data (n = 31, etanercept-treated). A small, multi-ethnic replication showed a non-significant trend towards an association among etanercept-treated RA patients of Portuguese ancestry (n = 139, P = 0.4), but no association among patients of Japanese ancestry (n = 151, P = 0.8). Our study demonstrates that an allele associated with response to etanercept therapy is also associated with CD84 gene expression, and further that CD84 expression correlates with disease activity. These findings support a model in which CD84 genotypes and/or expression may serve as a useful biomarker for response to etanercept treatment in RA patients of European ancestry. © 2013 Cui et al

Research Exploring Physical Activity in Care Homes (REACH): study protocol for a randomised controlled trial

Background: As life expectancy increases and the number of older people, particularly those aged 85 years and over, expands there is an increase in demand for long-term care. A large proportion of people in a care home setting spend most of their time sedentary, and this is one of the leading preventable causes of death. Encouraging residents to engage in more physical activity could deliver benefits in terms of physical and psychological health, and quality of life. This study is the final stage of a programme of research to develop and preliminarily test an evidence-based intervention designed to enhance opportunities for movement amongst care home residents, thereby increasing levels of physical activity. Methods/design: This is a cluster randomised feasibility trial, aiming to recruit at least 8–12 residents at each of 12 residential care homes across Yorkshire, UK. Care homes will be randomly allocated on a 1:1 basis to receive either the intervention alongside usual care, or to continue to provide usual care alone. Assessment will be undertaken with participating residents at baseline (prior to care home randomisation) and at 3, 6, and 9 months post-randomisation. Data relating to changes in physical activity, physical function, level of cognitive impairment, mood, perceived health and wellbeing, and quality of life will be collected. Data at the level of the home will also be collected and will include staff experience of care, and changes in the numbers and types of adverse events residents experience (for example, hospital admissions, falls). Details of National Health Service (NHS) usage will be collected to inform the economic analysis. An embedded process evaluation will obtain information to test out the theory of change underpinning the intervention and its acceptability to staff and residents. Discussion: This feasibility trial with embedded process evaluation and collection of health economic data will allow us to undertake detailed feasibility work to inform a future large-scale trial. It will provide valuable information to inform research procedures in this important but challenging area

Readiness for Delivering Digital Health at Scale: Lessons From a Longitudinal Qualitative Evaluation of a National Digital Health Innovation Program in the United Kingdom

Background: Digital health has the potential to support care delivery for chronic illness. Despite positive evidence from localized implementations, new technologies have proven slow to become accepted, integrated, and routinized at scale.Objective: The aim of our study was to examine barriers and facilitators to implementation of digital health at scale through the evaluation of a £37m national digital health program: ‟Delivering Assisted Living Lifestyles at Scale” (dallas) from 2012-2015.Methods: The study was a longitudinal qualitative, multi-stakeholder, implementation study. The methods included interviews (n=125) with key implementers, focus groups with consumers and patients (n=7), project meetings (n=12), field work or observation in the communities (n=16), health professional survey responses (n=48), and cross program documentary evidence on implementation (n=215). We used a sociological theory called normalization process theory (NPT) and a longitudinal (3 years) qualitative framework analysis approach. This work did not study a single intervention or population. Instead, we evaluated the processes (of designing and delivering digital health), and our outcomes were the identified barriers and facilitators to delivering and mainstreaming services and products within the mixed sector digital health ecosystem.Results: We identified three main levels of issues influencing readiness for digital health: macro (market, infrastructure, policy), meso (organizational), and micro (professional or public). Factors hindering implementation included: lack of information technology (IT) infrastructure, uncertainty around information governance, lack of incentives to prioritize interoperability, lack of precedence on accountability within the commercial sector, and a market perceived as difficult to navigate. Factors enabling implementation were: clinical endorsement, champions who promoted digital health, and public and professional willingness.Conclusions: Although there is receptiveness to digital health, barriers to mainstreaming remain. Our findings suggest greater investment in national and local infrastructure, implementation of guidelines for the safe and transparent use and assessment of digital health, incentivization of interoperability, and investment in upskilling of professionals and the public would help support the normalization of digital health. These findings will enable researchers, health care practitioners, and policy makers to understand the current landscape and the actions required in order to prepare the market and accelerate uptake, and use of digital health and wellness services in context and at scale