UNDERSTANDING THE DRIVERS AND CONSEQUENCES OF INTERACTIVE INNOVATION ADOPTION IN HEALTH AND MEDICINE

Providing technologies and services to enable collaboration and communication is a vital concern for information scientists and organizational leaders supporting communities of professionals in research-intensive health care environments. Innovative information practices and technologies—which may include mobile and social-media based technologies, new electronic records systems, new data management practices, and new communication procedures—are developed and introduced, often at considerable cost, with the goal of supporting and enhancing information sharing. However, at times these innovations fail to be adopted by their intended user communities, or adoption leads to unforeseen negative consequences for information sharing within the social environment. The health care sector in particular, while often characterized as generally innovative, has at times been slow to adopt new information innovations. This is a seeming paradox for innovation adoption studies, in which innovativeness is typically treated as synonymous with being among the first to adopt an innovation. This research was conducted in order to better understand the factors that influence or impede interactive innovation adoption in research-intensive health care environments. A four quadrant model, the Pollock Model of Interactive Innovation Adoption (PMIIA) was created and tested in a study of innovation adoption among physicians in training at an academic medical center in the southern United States. Factors from all four quadrants of the model were found to be related to either adoption decisions or perceptions of innovations. Additionally, both personal and professional values were found to play a role in participants\u27 adoption and use of the innovations

Understanding scientific data sharing outside of the academy

Sharing and reuse of scientific data, which can enhance the transparency and reproducibility of research and lead to the creation of new knowledge from existing data, is both a growing scholarly communication practice and an expanding area of interest in information science. However, much of the literature to date has focused on the data practices of scientists working in academic environments, with less research done on understanding the practices of scientists working in other types of environments, such as government or industry. This poster presents the results of a study in which data from a worldwide survey of scientists were analyzed to determine if differences in data practices, perceptions, and access to resources for data sharing existed between scientists who reported their primary work sector as academic and those who reported a non‐academic primary work sector. Researchers\u27 perceptions of data sharing and reuse were generally positive and did not differ significantly by work sector. However, differences were found in actual reported data sharing practices, even when controlling for researchers\u27 age, geographic location, and subject discipline. Researchers outside of academia had lesser odds of reporting sharing all their data. Differences were also found in reported barriers to data sharing, as well as in reported access to and use of data sharing resources, suggesting that data sharing challenges faced by scientists working outside of academia may differ from those faced by their academic peers. Implications for the adoption of data sharing practices and technologies, as well as for knowledge sharing and creation across work sectors, are discussed, and suggestions are offered for further research

Risk Factors for Self-Harm: Narratives from a Sample of Young People in Northern Ireland

Self-harm continues to be a growing concern within adolescence and is a globally recognised public health and social problem. Adolescents living in the community who self-harm are extremely common however less is known about these young people. This study focussed on capturing the voice of young people who engage in cutting behaviour to provide insight into the risks associated with this phenomenon. Single semi-structured interviews were conducted with 9 adolescents aged 16–18 years who lived within one Trust area in Northern Ireland. Thematic analysis was applied to the transcribed interviews in which themes emerged. The three subordinate themes of onset, persistence and ending of the behaviour encompassed six subthemes which were further identified as risk factors for the behaviour. Risk factors identified were: ACE’s, poor relationships and difficulties in support networks, exposure to self-harm, psychological issues, “addiction” to self-harm, concealment of harming behaviour—to control and professional and peer support that helps or hinders. These factors support the current literature base however individual and diverse explanations are highlighted which provide further depth, particularly around the concept of addiction and support that hinders young people. Despite the small nature of the study, recommendations for social work practice, clinical practice and other relevant professional practice as well as future research are considered in view of the findings. Key direction outlines the importance of building trusting relationships, continuity of care and continuing to listen to young people as vital to the helping relationship

Risk Factors for Self-Harm: Narratives from a Sample of Young People in Northern Ireland

Self-harm continues to be a growing concern within adolescence and is a globally recognised public health and social problem. Adolescents living in the community who self-harm are extremely common however less is known about these young people. This study focussed on capturing the voice of young people who engage in cutting behaviour to provide insight into the risks associated with this phenomenon. Single semi-structured interviews were conducted with 9 adolescents aged 16–18 years who lived within one Trust area in Northern Ireland. Thematic analysis was applied to the transcribed interviews in which themes emerged. The three subordinate themes of onset, persistence and ending of the behaviour encompassed six sub-themes which were further identified as risk factors for the behaviour. Risk factors identified were: ACE’s, poor relationships and difficulties in support networks, exposure to self-harm, psychological issues, “addiction” to self-harm, concealment of harming behaviour—to control and professional and peer support that helps or hinders. These factors support the current literature base however individual and diverse explanations are highlighted which provide further depth, particularly around the concept of addiction and support that hinders young people. Despite the small nature of the study, recommendations for social work practice, clinical practice and other relevant professional practice as well as future research are considered in view of the findings. Key direction outlines the importance of building trusting relationships, continuity of care and continuing to listen to young people as vital to the helping relationship

Vulnerability as a Function of Individual and Group Resources in Cumulative Risk Assessment

BACKGROUND: The field of risk assessment has focused on protecting the health of individual people or populations of wildlife from single risks, mostly from chemical exposure. The U.S. Environmental Protection Agency recently began to address multiple risks to communities in the “Framework for Cumulative Risk Assessment” [EPA/630/P02/001F. Washington DC:Risk Assessment Forum, U.S. Environmental Protection Agency (2003)]. Simultaneously, several reports concluded that some individuals and groups are more vulnerable to environmental risks than the general population. However, vulnerability has received little specific attention in the risk assessment literature. OBJECTIVE: Our objective is to examine the issue of vulnerability in cumulative risk assessment and present a conceptual framework rather than a comprehensive review of the literature. In this article we consider similarities between ecologic and human communities and the factors that make communities vulnerable to environmental risks. DISCUSSION: The literature provides substantial evidence on single environmental factors and simple conditions that increase vulnerability or reduce resilience for humans and ecologic systems. This observation is especially true for individual people and populations of wildlife. Little research directly addresses the topic of vulnerability in cumulative risk situations, especially at the community level. The community level of organization has not been adequately considered as an end point in either human or ecologic risk assessment. Furthermore, current information on human risk does not completely explain the level of response in cumulative risk conditions. Ecologic risk situations are similarly more complex and unpredictable for cases of cumulative risk. CONCLUSIONS: Psychosocial conditions and responses are the principal missing element for humans. We propose a model for including psychologic and social factors as an integral component of cumulative risk assessment

Development of a cross-cultural HPV community engagement model within Scotland

Objective To examine cultural barriers and participant solutions regarding acceptance and uptake of the Human Papillomavirus (HPV) vaccine from the perspective of Black African, White-Caribbean, Arab, Indian, Bangladeshi and Pakistani young people.Methods Forty young people from minority ethnic communities in Scotland took part in a qualitative study, involving seven focus groups and four paired interviews, to explore their views and experiences of the HPV vaccine. Using critical discursive psychology, the analysis focussed on young people’s accounts of the barriers and enablers to information, access and uptake of the HPV vaccination programme.Results Participants suggested innovative strategies to tackle intergenerational concerns, information design and accessibility, and public health communications across diverse contexts. A cross-cultural community engagement model was developed, embracing diversity and contradiction across different ethnic groups. This included four inter-related strategies: providing targeted and flexible information for young people; vaccine provision across the life-course; intergenerational information and; specific cross-cultural communications.Conclusion This is the first HPV cross-cultural model inductively derived from accounts of young people from different ethnic communities. We recommend public health practitioners and policymakers consider utilising the processes and strategies illustrated within this model in order to increase dialogue around public engagement, awareness and receptivity towards the HPV vaccination

Population-level impact and herd effects following the introduction of human papillomavirus vaccination programmes: updated systematic review and meta-analysis

Background More than 10 years have elapsed since human papillomavirus (HPV) vaccination was implemented. We did a systematic review and meta-analysis of the population-level impact of vaccinating girls and women against human papillomavirus on HPV infections, anogenital wart diagnoses, and cervical intraepithelial neoplasia grade 2+ (CIN2+)to summarise the most recent evidence about the effectiveness of HPV vaccines in real-world settings and to quantify the impact of multiple age-cohort vaccination.Methods In this updated systematic review and meta-analysis, we used the same search strategy as in our previous paper. We searched MEDLINE and Embase for studies published between Feb 1, 2014, and Oct 11, 2018. Studies were eligible if they compared the frequency (prevalence or incidence) of at least one HPV-related endpoint (genital HPV infections, anogenital wart diagnoses, or histologically confirmed CIN2+) between pre-vaccination and post-vaccination periods among the general population and if they used the same population sources and recruitment methods before and after vaccination. Our primary assessment was the relative risk (RR) comparing the frequency (prevalence or incidence) of HPV-related endpoints between the pre-vaccination and post-vaccination periods. We stratified all analyses by sex, age, and years since introduction of HPV vaccination. We used random-effects models to estimate pooled relative risks.Findings We identified 1702 potentially eligible articles for this systematic review and meta-analysis, and included 65 articles in 14 high-income countries: 23 for HPV infection, 29 for anogenital warts, and 13 for CIN2+.After 5\u20138 years of vaccination, the prevalence of HPV 16 and 18 decreased significantly by 83% (RR 0\ub717, 95% CI 0\ub711\u20130\ub725) among girls aged 13\u201319 years, and decreased significantly by 66% (RR 0\ub734, 95% CI 0\ub723\u20130\ub749) among women aged 20\u201324 years. The prevalence of HPV 31, 33, and 45 decreased significantly by 54% (RR 0\ub746, 95% CI 0\ub733\u20130\ub766) among girls aged 13\u201319 years. Anogenital wart diagnoses decreased significantly by 67% (RR 0\ub733, 95% CI 0\ub724\u20130\ub746) among girls aged 15\u201319 years, decreased significantly by 54% (RR 0\ub746, 95% CI 0.36\u20130.60) among women aged 20\u201324 years, and decreased significantly by 31% (RR 0\ub769, 95% CI 0\ub753\u20130\ub789) among women aged 25\u201329 years. Among boys aged 15\u201319 years anogenital wart diagnoses decreased significantly by 48% (RR 0\ub752, 95% CI 0\ub737\u20130\ub775) and among men aged 20\u201324 years they decreased significantly by 32% (RR 0\ub768, 95% CI 0\ub747\u20130\ub798). After 5\u20139 years of vaccination, CIN2+ decreased significantly by 51% (RR 0\ub749, 95% CI 0\ub742\u20130\ub758) among screened girls aged 15\u201319 years and decreased significantly by 31% (RR 0\ub769, 95% CI 0\ub757\u20130\ub784) among women aged 20\u201324 years.Interpretation This updated systematic review and meta-analysis includes data from 60 million individuals and up to 8 years of post-vaccination follow-up. Our results show compelling evidence of the substantial impact of HPV vaccination programmes on HPV infections and CIN2+ among girls and women, and on anogenital warts diagnoses among girls, women, boys, and men. Additionally, programmes with multi-cohort vaccination and high vaccination coverage had a greater direct impact and herd effects

Robot Assisted Training for the Upper Limb after Stroke (RATULS): study protocol for a randomised controlled trial.

BACKGROUND: Loss of arm function is a common and distressing consequence of stroke. We describe the protocol for a pragmatic, multicentre randomised controlled trial to determine whether robot-assisted training improves upper limb function following stroke. METHODS/DESIGN: Study design: a pragmatic, three-arm, multicentre randomised controlled trial, economic analysis and process evaluation. SETTING: NHS stroke services. PARTICIPANTS: adults with acute or chronic first-ever stroke (1 week to 5 years post stroke) causing moderate to severe upper limb functional limitation. Randomisation groups: 1. Robot-assisted training using the InMotion robotic gym system for 45 min, three times/week for 12 weeks 2. Enhanced upper limb therapy for 45 min, three times/week for 12 weeks 3. Usual NHS care in accordance with local clinical practice Randomisation: individual participant randomisation stratified by centre, time since stroke, and severity of upper limb impairment. PRIMARY OUTCOME: upper limb function measured by the Action Research Arm Test (ARAT) at 3 months post randomisation. SECONDARY OUTCOMES: upper limb impairment (Fugl-Meyer Test), activities of daily living (Barthel ADL Index), quality of life (Stroke Impact Scale, EQ-5D-5L), resource use, cost per quality-adjusted life year and adverse events, at 3 and 6 months. Blinding: outcomes are undertaken by blinded assessors. Economic analysis: micro-costing and economic evaluation of interventions compared to usual NHS care. A within-trial analysis, with an economic model will be used to extrapolate longer-term costs and outcomes. Process evaluation: semi-structured interviews with participants and professionals to seek their views and experiences of the rehabilitation that they have received or provided, and factors affecting the implementation of the trial. SAMPLE SIZE: allowing for 10% attrition, 720 participants provide 80% power to detect a 15% difference in successful outcome between each of the treatment pairs. Successful outcome definition: baseline ARAT 0-7 must improve by 3 or more points; baseline ARAT 8-13 improve by 4 or more points; baseline ARAT 14-19 improve by 5 or more points; baseline ARAT 20-39 improve by 6 or more points. DISCUSSION: The results from this trial will determine whether robot-assisted training improves upper limb function post stroke. TRIAL REGISTRATION: ISRCTN, identifier: ISRCTN69371850 . Registered 4 October 2013

Comprehensive Rare Variant Analysis via Whole-Genome Sequencing to Determine the Molecular Pathology of Inherited Retinal Disease

Inherited retinal disease is a common cause of visual impairment and represents a highly heterogeneous group of conditions. Here, we present findings from a cohort of 722 individuals with inherited retinal disease, who have had whole-genome sequencing (n = 605), whole-exome sequencing (n = 72), or both (n = 45) performed, as part of the NIHR-BioResource Rare Diseases research study. We identified pathogenic variants (single-nucleotide variants, indels, or structural variants) for 404/722 (56%) individuals. Whole-genome sequencing gives unprecedented power to detect three categories of pathogenic variants in particular: structural variants, variants in GC-rich regions, which have significantly improved coverage compared to whole-exome sequencing, and variants in non-coding regulatory regions. In addition to previously reported pathogenic regulatory variants, we have identified a previously unreported pathogenic intronic variant in $\textit{CHM}$ in two males with choroideremia. We have also identified 19 genes not previously known to be associated with inherited retinal disease, which harbor biallelic predicted protein-truncating variants in unsolved cases. Whole-genome sequencing is an increasingly important comprehensive method with which to investigate the genetic causes of inherited retinal disease.This work was supported by The National Institute for Health Research England (NIHR) for the NIHR BioResource – Rare Diseases project (grant number RG65966). The Moorfields Eye Hospital cohort of patients and clinical and imaging data were ascertained and collected with the support of grants from the National Institute for Health Research Biomedical Research Centre at Moorfields Eye Hospital, National Health Service Foundation Trust, and UCL Institute of Ophthalmology, Moorfields Eye Hospital Special Trustees, Moorfields Eye Charity, the Foundation Fighting Blindness (USA), and Retinitis Pigmentosa Fighting Blindness. M.M. is a recipient of an FFB Career Development Award. E.M. is supported by UCLH/UCL NIHR Biomedical Research Centre. F.L.R. and D.G. are supported by Cambridge NIHR Biomedical Research Centre