bluuebunny/crossref_metadata_2025_split huggingface dataset:
Personally tailored cancer management based on knowledge banks of genomic and clinical data
Authors: Gerstung Moritz , Papaemmanuil Elli , Martincorena Inigo , Bullinger Lars , Gaidzik Verena I , Paschka Peter , Heuser Michael , Thol Felicitas , Bolli Niccolo , Ganly Peter , Ganser Arnold , McDermott Ultan , Döhner Konstanze , Schlenk Richard F , Döhner Hartmut , Campbell Peter J 
Published: June 2016

ABSTRACTSequencing of cancer genomes, or parts thereof, has become widespread and will soon be implemented as part of routine clinical diagnostics. However the clinical ramifications of this have not been fully assessed. Here we assess the utility of sequencing large and clinically well-annotated cancer cohorts to derive personalized predictions about treatment outcome. To this end we study a cohort of 1,540 patients with AML (acute myeloid leukemia) with genetic profiles from 111 cancer genes, cytogenetic data and diagnostic blood counts. We test existing and develop new models to compute the probability of six different clinical outcomes based on more than 100 genetic and clinical variables. The predictions derived from our knowledge bank are more detailed and outperform strata currently used in clinical practice (concordance C=72% v C=64%), and are validated on three cohorts and data from TCGA (C=70%). Our prognostic algorithm is available as an online tool (http://cancer.sanger.ac.uk/aml-multistage). A simulation of different treatment scenarios indicates that a refined risk stratification could reduce the number of bonemarrow transplants by up to 25%, while achieving the same survival. Power calculation show that the inclusion of further genes most likely has small effects on the prognostic accuracy; increasing the number of cases will further reduce the error of personalized predictions.
Global and local connectivity differences converge with gene expression in a neurodevelopmental disorder of known genetic origin
Authors: Bathelt Joe , Barnes Jessica , Raymond F Lucy , Baker Kate , Astle Duncan 
Published: June 2016

1AbstractKnowledge of genetic cause in neurodevelopmental disorders can highlight molecular and cellular processes critical for typical development. Furthermore, the relative homogeneity of neurodevelopmental disorders of known genetic origin allows the researcher to establish the subsequent neurobiological processes that mediate cognitive and behavioural outcomes. The current study investigated white matter structural connectivity in a group of individuals with intellectual disability due to mutations in ZDHHC9. In addition to shared cause of cognitive impairment, these individuals have a shared cognitive profile, involving oro-motor control difficulties and expressive language impairment. Analysis of structural network properties using graph theory measures showed global reductions in mean clustering coefficient and efficiency in the ZDHHC9 group, with maximal differences in frontal and parietal areas. Regional variation in clustering coefficient and local efficiency across cortical regions in cases and controls were significantly associated with known pattern of expression of ZDHHC9 in the normal adult human brain. The results demonstrate that a mutation in a single gene impacts upon white matter organisation across the whole-brain, but also shows regionally specific effects, according to variation in gene expression. Furthermore, these regionally specific patterns may link to specific developmental mechanisms, and correspond to specific cognitive deficits.
RADpainterandfineRADstructure: population inference from RADseq data
Authors: Malinsky Milan , Trucchi Emiliano , Lawson Daniel John , Falush Daniel 
Published: June 2016

AbstractPowerful approaches to inferring recent or current population structure based on nearest neighbour haplotype ‘coancestry’ have so far been inaccessible to users without high quality genome-wide haplotype data. With a boom in non-model organism genomics, there is a pressing need to bring these methods to communities without access to such data. Here we presentRADpainter, a new program designed to infer the coancestry matrix from restriction-site-associated DNA sequencing (RADseq) data. We combine this program together with a previously published MCMC clustering algorithm intofineRADstructure- a complete, easy to use, and fast population inference package for RADseq data (https://github.com/millanek/fineRADstructure). Finally, with two example datasets, we illustrate its use, benefits, and robustness to missing RAD alleles in double digest RAD sequencing.
Patient speaking for patients
Authors: Cassels Alan 
Published: June 2016

Purpose– The purpose of this paper is to recognize the vital reasons for including public and patient voices in health policy decision-making, but illustrates the challenge it creates for decision-makers who must consider whether those voices represent patient interests or corporate interests.Design/methodology/approach– This paper takes the form of a narrative review.Findings– The history of flibanserin, a controversial new drug to treat a debatable condition, illustrates how a public relations campaign could circumvent the well-established process to weigh evidence of potential harm vs benefit by one of the most robust drug regulators in the world.Practical implications– It is both vital to recognize a fundamental problem that exists when corporate interests deceptively assume the mantle of “the patient voice” and then act to reduce that influence while supporting and building capacity in genuinely independent, consumer-focused activities.Originality/value– This paper suggests that organizations interested in consumer protection and the safe and cost-effective use of health resources create policies and procedures that can foster genuine consumer involvement while recognizing the danger to patient safety and consumer interests when consumer involvement is hijacked by vested interests.
Health services: governing body vs care receiver – a comparison between China and Hong Kong
Authors: Fung Ita M. , Chan Wai Yee , Chan Eric 
Published: June 2016

Purpose
– The purpose of this paper is to bring consideration to the care receivers’ point of view when setting policies for the delivery of health services.

Design/methodology/approach
– This paper briefly reviews the delivery of health services designed by the governing body in Hong Kong and China. It also looks into how the care receivers behave in the respective delivery system.

Findings
– With different objectives and fundamentals, Hong Kong and China strive to improve the delivery of health services. However, there are issues which make the implementation of these improvements challenging. This paper looks into the care receiver’s concerns that impact the delivery of health services.

Originality/value
– Provide areas for consideration when setting up health policy.
A journey of partnership
Authors: Johnson Harmony , Ulrich Cathy , Cross Nicole , Greenwood Margo 
Published: June 2016

Purpose
– The purpose of this paper is to describe the process of transformation in the Northern Health region of British Columbia (BC), Canada, based on a new relationship between governments of BC, Canada, and First Nations.

Design/methodology/approach
– Written from the perspective of four key participants in the transformation process, this paper highlights the ways in which partnership has been integral to the transformation of health service delivery to First Nations communities in Northern BC.

Findings
– In sharing their experiences with health system transformation through partnership, the authors of this paper hope to contribute to a growing set of promising practices as indigenous health service organizations take a greater role in health service provision, and non-indigenous health service organizations improve their understanding of and relationships with indigenous communities.

Originality/value
– This paper outlines a unique and leading edge transformation in health service delivery, told from the perspectives of key partners involved in the transformation process.
IJHG review
Authors: MacVane Phipps Fiona 
Published: June 2016

Purpose
– The purpose of the this paper is to provide readers with a succinct summary of the issue’s content.

Design/methodology/approach
– Each individual article is reviewed, with common themes identified.

Findings
– The paper enables readers to scan content and select articles of most interest or relevance to their needs.

Practical implications
– The review sections enable readers to identify articles of special interest.

Originality/value
–IJHG is the only Emerald publication containing a review section of this kind. It has been a feature of the journal since its early inception as the British Journal of Clinical Governance (BJCG) and has developed over the years to reflect the current needs of the journal.
Fund managers’ herding and mutual fund governance
Authors: Casavecchia Lorenzo 
Published: June 2016

Purpose
– The purpose of this paper is to identify the implications of managerial herding for investors’ wealth and capital allocation across funds, and the critical role played by fund governance in monitoring herding incentives.

Design/methodology/approach
– The author adopt the fund herding measure first proposed by Grinblatt et al. (1995) over the long sample period 1992-2007. Univariate and multivariate tests are then constructed to examine the relationship between managerial herding, performance, and investors’ sensitivities. OLS, fixed-effect panel data models are utilized to conduct the tests.

Findings
– The author show that managers that do not herd have above-average managerial skills, trade less on noise, and significantly outperform herding managers. The author also illustrate that although fund herding could be used as a signal of managerial quality, underperforming herding funds manage to survive in equilibrium, indicating that investor flows do not adequately respond to the information content of a persistent herding behavior. Finally, the author demonstrate that better governance in the form of stronger managerial incentive schemes constitutes a significant deterrent against detrimental herding strategies, representing an effective monitoring device of the response of fund managers to poor flow-performance sensitivity.

Originality/value
– The paper provides original evidence on the efficacy of external and internal governance in deterring wealth-reducing herding strategies. The author document that where more effective managerial incentives schemes are put in place by the management companies, fund managers are more likely to be better informed, resulting in fewer incentives to mimic the trading decisions of their peers.
The impact of environmental and social sustainability practices on sourcing behavior
Authors: Thomas Rodney W. , Fugate Brian S. , Robinson Jessica L , Tasçioglu Mertcan 
Published: June 2016

Purpose– The purpose of this paper is to make an initial attempt to understand if environmental and social sustainability practices of suppliers influence the buying decision and ultimate supplier selection in a purchasing organization.Design/methodology/approach– In order to test the effects of sustainability on sourcing decisions, this research utilizes two scenario-based behavioral experiments grounded in a transportation carrier selection context.Findings– Two scenario-based experiments with managerial participants were conducted and results suggest that environmental and social aspects of sustainability are indeed relevant sourcing considerations that impact both economic and relational aspects of exchange relationships. These sustainability aspects enable carriers to differentiate themselves in a highly commoditized market.Originality/value– Extant research advocates for sourcing organizations to take an active role in selecting sustainable suppliers. However, little is known about how supplier sustainability performance impacts sourcing decisions and supplier selection. This research addresses this gap in the literature and explores the effects of price, environmental, and social sustainability on purchase intentions and trust formation in a transportation carrier selection context.
The changing landscape of off-label prescription drug promotion
Authors: Sarkees Matthew E. , Fitzgerald M. Paula 
Published: June 2016

Purpose
Off-label drug prescribing by healthcare providers is a growing practice. Yet, the US Food and Drug Administration bans the marketing of drugs for off-label uses. In recent years, legal challenges by the pharmaceutical industry have chipped away government restrictions on off-label drug promotion. Although the changing legal landscape has been discussed, this paper aims to examine how key stakeholders and policy-makers might interact to provide a more transparent marketing environment for off-label drug discussions in the patient–provider relationship.

Design/methodology/approach
Drawing on a variety of sources, the authors assess the current marketing landscape of off-label drugs and some of the issues that challenge the healthcare provider–patient relationship. The authors then examine opportunities to improve the off-label promotion environment and the relevant decision-making theories that key stakeholders need to consider when formulating marketing efforts and policies.

Findings
The authors suggest that fewer restrictions on truthful, non-misleading off-label drug promotion provide an opportunity to improve drug knowledge and, importantly, healthcare provider and consumer decision-making. Key stakeholders should consider, among other solutions, criteria for defining truthful information on off-label drugs, alternative methods of approval of off-label uses and ubiquitous icons to identify off-label prescribing to all stakeholders.

Originality/value
Rather than rehash the legal landscape of off-label drug promotion, this paper focuses on how the healthcare provider–patient relationship is impacted and how stakeholders can improve information flow in this changing environment.
A case of tightrope walking
Authors: Bramwell Donna , Sanders Caroline , Rogers Anne 
Published: June 2016

Purpose
– Given that current policy in the UK is focused on encouraging individuals with long-term health conditions (LTCs) to work wherever possible, the purpose of this paper is to explore employer’s and manager’s perspectives of supporting those with LTCs as any successful workplace engagement will largely be influenced by their readiness to be supportive.

Design/methodology/approach
– In total, 40 semi-structured in-depth interviews were conducted with employers’ and managers’ from a range of organisations in the north-west of England during the period March 2011 to January 2012. Comparative analysis of the data was guided and informed by grounded theory principles.

Findings
– All bar one participant typified their role as one of a difficult “balancing” act of additional and often incompatible demands, pressures and feelings. It was evident that coping with this ambivalent situation incurred an emotional consequence for participants.

Practical implications
– Employers’ and managers’ response to ambivalent feelings may serve to undermine their capacity to translate supportive intentions into tangible action and are thus reflected in employee’s perceptions of unsupportive relations. Developing an intervention to raise awareness of the potential for this situation and subsequent impact on the return to work process would be beneficial for all stakeholders – the government, employees and employers alike.

Originality/value
– This in-depth study gives voice to employers and managers whose experiences and perceptions of supporting people with LTCs is largely unknown and empirically under-researched. Findings add to the wealth of research from the employee perspective to provide a more nuanced picture of the workplace for those working with and/or supporting those with LTCs.
Predicting entrepreneurial intentions of freshmen students from EAO modeling and personal background
Authors: Aloulou Wassim J. 
Published: June 2016

Purpose
The purpose of this paper is to study the effects of personal background and entrepreneurial attitudes on entrepreneurial intentions of Saudi Freshmen students of Al Imam Mohammad Ibn Saud Islamic University. After reviewing the literature and related theories on entrepreneurship, attitudes and intentions, this study provides a conceptual framework trying to identify the effects of most influential factors on individual’s intention to become an entrepreneur.

Design/methodology/approach
Through a survey study developed from previous empirical studies, the paper aims to investigate the significant elements of intentions from a sample of 103 students randomly selected. This study is both descriptive and analytical using correlations and multiple regressions.

Findings
The findings show that significant correlations among variables were found. The achievement and innovation attitudes are significant elements to entrepreneurial intentions. Students scored quite high on them, but, moderate on personal control and self-esteem attitudes. Students might have a real intention for starting their own businesses later that could be sustained during their studies at university. Additionally, entrepreneurs among relatives and entrepreneurship training were also the other significant elements to intentions.

Research Limitations/implications
Implications for future research are described and some pragmatic recommendations are provided to promote students’ entrepreneurial initiatives and behaviors at university.

Social Implications
The exploratory analysis suggests the need to develop more the awareness of students to entrepreneurship as potential career choice to help them to be active in the society.

Originality/value
In this paper, the Entrepreneurial Attitude Orientation model is validated for a Saudi university considered as a specific context. Broader reflections about a freshman student entrepreneurship as refocused research agenda is also considered by undertaking some new research and developing a comprehensive and contextual framework.
Exploring the role of motivational cultural intelligence in SIE women’s adjustment
Authors: Schreuders-van den Bergh Riana , Du Plessis Yvonne 
Published: June 2016

Purpose– The purpose of this paper is to explore and discuss the role of motivational cultural intelligence and its related strategies in the experiential learning and cross-cultural adjustment of self-initiated expatriate (SIE) women.Design/methodology/approach– Interactive qualitative analysis (IQA) was the design and process used for this research. Two IQA focus groups were conducted with a non-probability purposive sample of 21 SIE women, aged between 26 and 53 who were living and working in the Netherlands at the time of the research. Participants were invited to brainstorm about their adjustment experience and actively construct a framework of their adjustment experiences.Findings– Evidence is provided for the role of motivational CQ, with specific reference to reinvention, self-efficacy and goal-setting as motivational strategies, in the successful adjustment of SIE women. Conceptual frameworks of the cyclical learning process and motivational strategies with choice as a moderator in the process, have been developed. Three propositions for future research are also presented.Originality/value– This study represents an under-researched group and proposes conceptual frameworks for understanding the complex, multidimensional process of SIE women adjustment and the role of motivation, from a participant perspective.
On the ethics of social network research in libraries
Authors: Mannheimer Sara , Young Scott W.H. , Rossmann Doralyn 
Published: June 2016

PurposeIn this paper, faculty librarians at an academic institution explore the ethical dimensions of conducting research with user-generated social networking service (SNS) data. In an effort to guide librarian-researchers, this paper first offers a background discussion of privacy ethics across disciplines and then proposes a library-specific ethical framework for conducting SNS research.Design/methodology/approachBy surveying the literature in other disciplines, three key considerations are identified that can inform ethical practice in the field of library science: context, expectation, and value analysis. For each of these considerations, the framework is tailored to consider ethical issues, as they relate to libraries and our practice as librarian-researchers.FindingsThe unique role of the librarian-researcher demands an ethical framework specific to that practice. The findings of this paper propose such a framework.Practical implicationsLibrarian-researchers are at a unique point in our history. In exploring SNSs as a source of data to conduct research and improve services, we become challenged by conflicting and equally cherished values of patron privacy and information access. By evaluating research according to context, expectations, and value, this framework provides an ethical path forward for research using SNS data.Originality/valueAs of this paper’s publication, there is no existing ethical framework for conducting SNS research in libraries. The proposed framework is informed both by library values and by broader research values, and therefore provides unique guidelines for the librarian-researcher.
“Privacy by default” and active “informed consent” by layers
Authors: Noain-Sánchez Amaya 
Published: June 2016

Purpose
The purpose of this paper is to lay out an approach to addressing the problem of privacy protection in the global digital environment based on the importance that information has to improve users’ informational self-determination. Following this reasoning, this paper focuses on the suitable way to provide user with the correct amount of information they may need to maintain a desirable grade of autonomy as far as their privacy protection is concerned and decide whether or not to put their personal data on the internet.

Design/methodology/approach
The authors arrive at this point in their analysis by qualitative discourse analysis of the most relevant scientific papers and dossiers relating to privacy protection.

Findings
The goal of this paper is twofold. The first is to illustrate the importance of privacy by default and informed consent working together to protect information and communication technology (ICT) users’ privacy. The second goal is to develop a suitable way to administrate the mentioned “informed consent” to users.

Originality/value
To fulfil this purpose, the authors present a new concept of informed consent: active “informed consent” or “Opt-in” model by layers. “Opt-in” regimens have already been used with cookies but never with 2.0 applications, as, for instance, social network sites (SNS).
Ethics and ICT: Why all the fuss?
Authors: Warren Matthew , Lucas Richard 
Published: June 2016

Purpose
This paper aims to introduce a special section based on papers from Australasian Conference for Information Systems 2014.

Design/methodology/approach
This paper comments on key contextualisation moments in relevant history.

Findings
This paper describes the initiative in Australia to widen Information and Communication Technology ethics awareness.

Originality/value
This is a new attempt to bring Ethics and Information Systems academics closer together.