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Networking digital data on endangered languages of the Asia Pacific region
29 November 2006University of SydneyBarwick, LindaSince the invention of audio-visual recording technologies in the late nineteenth century, scholars of languages, cultures and musics from around the world have enthusiastically embraced the potential of portable recording technologies — initially audio, and since the 1970s, video — to capture the events that they study. Because of the changing nature of people, societies and technologies, many ethnographic recordings have outlasted the people, traditions and even languages that they recorded. These research recordings now have immense significance not only for researchers but also for the descendants of the people recorded and the cultural heritage communities whose traditions and languages they encode, yet they are more endangered than ever because of the current crisis of format obsolescence for many of the most common audio- and video-recording formats used in the 20th century. This paper discusses issues for finding and preserving these important cultural documents, many of which are held in private collections, or small research collections in Universities or local cultural museums. Many small archives do not have the funding or expertise to digitise and preserve their analogue audiovisual collections. There is some scope for optimism, however, because significant opportunities for collaboration across institutional and even national boundaries have been opened up by emerging high-bandwidth networking and distributed storage technologies. These enable distributed facilities for storage and management of archived research data. Digital technologies can also facilitate including the relevant cultural community collaborations to look after and manage significant audiovisual recordings. The paper discusses these issues through a case study of PARADISEC (the Pacific and Regional Archive for Digital Sources in Endangered Cultures) (http://www.paradisec.org.au), an Australian project established in 2003 by the Universities of Sydney, Melbourne and the Australian National University to preserve and make accessible Australian researchers’ field recordings in the Asia-Pacific region.
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Digital conversion of Nineteenth century publications - production management in the Australian Cooperative Digitisation Project 1840-45
23 January 2007University of SydneyColeman, Ross;Webb, ColinThis article will discuss and evaluate the management and production issues of the Australian Cooperative Digitisation Project 1840-45 - a collaborative project funded by the Australian Research Council. The completion of this digital library project allows the authors to reflect on the technical issues and the interrelationships of the content, project organisation, the production model with its access and preservation goals, and issues of quality control, in relation to the future viability of such projects. -- " It may in truth be said, that in no country, and at no period since the invention of printing, has there appeared a greater necessity for a periodical conducted with spirit and principle, in the popular cause, than there does appear to exist in the colony of New South Wales at this moment. The only journals of character now existing upon any basis that offers to be permanent, boast of their “moderate conservatism”; a term which according to our interpretation means just as much oppression of the many by the few as the spirit of the age will bear.....unless the people are fully represented in the periodical press, as well as in the councils of the country, their rights will in the conflict of factions and interests be greatly endangered” - The Weekly Register of politics, facts and general literature, vol 1 no 1 July 29 1843. -- The period 1840-45 was a seminal period in the development of an Australian colonial culture. This period, following the end of convict transportation and preceding the influx of the gold-rushes, was characterised by exploration and expansion, conflict, commercial growth, political agitation and a surge in local publication reflecting the issues and concerns of the time. Journals, such as the Weekly Register, led and engaged in the political and social debate of the time, and remain today as the voice and contemporary record of the period. The Australian Cooperative Digitisation Project, 1840-45 (ACDP) was funded, through an Australian Research Council grant, to both digitise this contemporary record for access and ensure its long term preservation. The project has been a collaborative initiative between the University of Sydney Library, the State Library of New South Wales (SLNSW), and the National Library of Australia (NLA) Fundamental to the success of this project was the need to establish practical and implementable standards for large-scale digital conversion, in the context of the hybrid (microfilming and imaging) production model adopted using external vendors. The project - following the access and preservation initiatives developed in the US - has been described in a number of earlier articles (these can be found at the project site at http://www.nla.gov.au/acdp/), and we do not intend to revisit these descriptions in detail. This article will address and evaluate the management and production issues of what has been a complex developmental digital library project.. This complexity can best be characterised by the interrelationships of the nature of the content, the project organisation, access and preservation goals, production issues and management, and image quality control.
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The Australian Cooperative Digitisation Project 1840-45 - A Progress Report
23 January 2007University of SydneyColeman, Ross;Ventress, AlanThe Australian Cooperative Digitisation Project, 1840-45, also known as Ferguson 1840-45, is a collaborative project between the University of Sydney Library, the State Library of New South Wales (SLNSW), the National Library of Australia (NLA) and Monash University Library, supported by ten other institutional and industry groups. The project has been funded by an Australian Research Council 1996 Infrastructure Grant through the Department of Employment, Education and Training.
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The Blog as a High-impact Institutional Communication Tool
19 March 2007University of SydneyGoodfellow, Tom;Graham, SarahParticipation in conferences is a key aspect of professional development for library staff. The benefits of attending a conference include networking opportunities, engagement with the latest ideas, and seeing products provided by vendors. However, the considerable cost of sending staff to a conference is often not matched by the benefits that the library gains as a result. The knowledge acquired by the individuals attending is not always effectively shared by conventional tools such as conference reports or post-event presentations. This is particularly true in larger libraries, and in geographically dispersed organisations. We aimed to maximise the institutional impact of our attendance at Click 06 (the biennial ALIA conference) by providing a blog of the event and encouraging interaction with our colleagues during the conference itself. In this article we will describe the process of establishing, promoting and authoring an ‘institution focussed conference blog’. We also evaluate the success of the project and discuss the implications for future development.
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Research data and repository metadata. Policy and technical issues at the University of Sydney Library.
27 May 2009University of SydneyBrownlee, RowanThe University of Sydney Library’s repository contains research outputs primarily comprising traditional publication types. Many academics manage data collections within databases and spreadsheets using metadata dissimilar to the repository’s Dublin Core schema. During 2007 and 2008 the author explored issues surrounding submission of a small range of research data collections and associated metadata. Native metadata structures were analysed and mapped to DC and scripts translated, packaged and transferred collections. This paper discusses metadata management and repository service levels and sustainability. It describes the Library’s approach to defining service requirements and includes discussion of various metadata management options. It also describes related activities within the University of Sydney to develop eResearch services and to harmonise the roles and relationships of eResearch support service providers
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Author Profiling for English and Arabic Emails
08 February 2010University of SydneyEstival, Dominique;Gaustad, Tanja;Hutchinson, Ben;Pham, Son Bao;Radford, WillThis paper reports on some aspects of a research project aimed at automating the analysis of texts for the purpose of author profiling and identification. The Text Attribution Tool (TAT) was developed for the purpose of language-independent author profiling and has now been trained on two email corpora, English and Arabic. The complete analysis provides probabilities for the author’s basic demographic traits (gender, age, geographic origin, level of education and native language) as well as for five psychometric traits. The prototype system also provides a probability of a match with other texts, whether from known or unknown authors. A very important part of the project was the data collection and we give an overview of the collection process as well as a detailed description of the corpus of email data which was collected. We describe the overall TAT system and its components before outlining the ways in which the email data is processed and analysed. Because Arabic presents particular challenges for NLP, this paper also describes more specifically the text processing components developed to handle Arabic emails. Finally, we describe the Machine Learning setup used to produce classifiers for the different author traits and we present the experimental results, which are promising for most traits examined.
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Information discovery in ambiguous zones of research
12 April 2011University of SydneySukovic, SuzanaElectronic environments for information discovery are considered in relation to open-ended and dynamic research practices in the humanities, but a system suitable for these scholars would have many other applications as well. Considerations of flexible electronic environments that would support research are based on the holistic view of information processes and the requirements that information systems enable connections, as well as the trustworthiness and authenticity of information. The proposed electronic environment consists of flexible networks of connections between information of different granularity. Strong and weak information paths are established through use, which contributes to the development and informational value of the system. Organizational support, as well as new forms of information provision and services, are required to enable novel approaches to information discovery and research.
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Reviewer refusal rates for 300,866 requested reviews in 20 BMJ Group journals
25 May 2011University of SydneyChapman, SimonData were extracted from the BenchPress editorial management system for 20 journals which each had data for the years 2002-2010.We examined whether there were differences among journals on reviewer refusal rates. Across all journals, nearly one in three requests to review were declined (range 21.2-39.8).
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Seeing slow and seeing fast: Two limits on perception
11 July 2011University of SydneyHolcombe, AlexVideo cameras have a single temporal limit set by the frame rate. The human visual system has multiple temporal limits set by its various constituent mechanisms. These limits appear to form two groups. A fast group comprises specialized mechanisms for extracting perceptual qualities such as motion direction, depth, and edges. The second group, with coarse temporal resolution, includes judgments of the pairing of color and motion, the joint identification of arbitrary spatially separated features, the recognition of words, and high-level motion. These temporally coarse percepts may all be mediated by high-level processes. Working at very different timescales, the two groups of mechanisms collaborate to create our unified visual experience.
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Comparing learned predictiveness effects within and across compound discriminations
21 October 2011University of SydneyLivesey, Evan J;Thorwart, Anna;De Fina, Nicole L;Harris, Justin AIn four human learning experiments, we examined the extent to which learned predictiveness depends upon direct comparison between relatively good and poor predictors. Participants initially solved (1) linear compound discriminations in which one or both of the stimuli in each compound were predictive of the correct outcome, (2) biconditional discriminations where only the configurations of the stimuli were predictive of the correct outcome, or (3) pseudo-discriminations in which no stimulus features were predictive. In each experiment, subsequent learning and test stages were used to assay changes in the associability of each stimulus brought about by its role in the initial discriminations. Although learned predictiveness effects were observed in all experiments (i.e. previously predictive cues were more readily associated with a new outcome than previously non-predictive cues), the same changes in associability were observed regardless of whether the stimulus was initially learned about in the presence of an equally predictive, more predictive, or less predictive stimulus. The results suggest that learned associability is not controlled by competitive allocation of attention, but rather by the absolute predictiveness of each individual cue.
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Constructivism for Philosophers (Be it a Remark on Realism)
07 November 2011University of SydneyGal, OferBereft of the illusion of an epistemic vantage point external to science, what should be our commitment towards the categories, concepts and terms of that very science? Should we, despaired of the possibility to found these concepts on rock bottom, adopt empiricist skepticism? Or perhaps the inexistence of external foundations implies, rather, immunity for scientific ontology from epistemological criticism? Philosophy’s “realism debate” died out without providing a satisfactory answer to the dilemma, which was taken over by the neighboring disciplines. The “symmetry principle” of the “Strong Programme” for the sociology of science-the requirement that truth and error receive the same kind of causal explanations-offered one bold metaphysical answer, under the guise of a methodological decree. Recently, however, it has been argued that this solution is not bold enough, that the social constructivists replaced the naïve presumption of an independent nature which adjudicates our beliefs with a mirror-image presumption of a sui generis society which furnishes these beliefs autonomously. The proper metaphysics for a foundationless epistemology,argues Bruno Latour, is one which grants nature and society, object and subject, equal roles in the success and failure of science and technology; one in which history of society merges with a history of things-in-themselves. The paper analyzes the philosophical and methodological motivations and ramifications of this extraordinary suggestion.
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The benefits of peer observation of teaching for tutor development
07 June 2013University of SydneyBell, Amani;Mladenovic, RosinaPeer observation partnerships can help teachers improve their teaching practice, transform their educational perspectives and develop collegiality (Bell 2005). This paper describes the peer observation model used in the tutor development program in the Faculty of Economics and Business at the University of Sydney, and reports on the effectiveness of this exercise using quantitative and qualitative data from five sources. Results from 32 peer observations reveal both the common strengths and the areas in which tutors need to develop their teaching practice. Ninety four percent of participants found the exercise valuable and 88% said that they would change their teaching as a result of the exercise. This model can be applied in academic development programs in any discipline and suggestions for augmentation and improvement are provided.
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Exploring tutors’ conceptions of excellent tutoring
10 July 2013University of SydneyBell, AmaniWith high numbers of new casual tutors in the Faculty of Economics and Business each semester, a program that addresses tutors’ preparation for teaching is essential. The tutor development program described here is underpinned by a ‘communities of practice’ model (Wenger 2000), where tutors engage in activities in order to share and develop their experiences of teaching. This paper discusses one such activity that was used in the early stages of the program to support the development of a shared repertoire about excellent tutoring. Tutors individually identified the characteristics of excellent tutoring and these were then grouped and discussed. The categories of comments addressed many of the recognised principles of excellent teaching, with student-centred aspects at the fore. The exploratory exercise highlights the importance of informal knowledge, and the role of reflective exercises in bringing forth that knowledge.
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Precarity of Place: a complement to the growing precariat literature
29 August 2013University of SydneyBanki, SusanThe growing precarity literature offers some valuable ways of thinking about both the roots of and responses to precarity, whether defined existentially (as per Butler), economically (Standing) or intersubjectively (Neilson and Rossiter). Yet the term precarity, in its eagerness to encompass all those who experience it, fails to properly capture the challenges of one of its subset populations: that of noncitizens. Rather than discard the term altogether, this paper incorporates elements from the precariat literature and offers a counter (sub)concept: ‘precarity of place.’ The paper briefly reviews the precarity literature, then argues for the importance of a separate term for precarity of place, and then notes how the concepts are well aligned. The paper concludes with suggestions for future research, both theoretical and empirical.
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An Electronic Calendar for Organizing Assessments in a Large Faculty
17 October 2013University of SydneyArndell, Michael;Bridgeman, Adam J;Goldsworthy, Rebecca;Taylor, Charlotte E;Tzioumis, VickyUsing data from an electronic unit of study outline system, the University of Sydney's Faculty of Science built an assessment calendar to organize assessment schedules and help first-year students transition to university life. The calendar helps students organize and understand their assessments using their preferred computers or mobile calendar applications. The calendar also helps staff in a large faculty compare and rationalize assessment dates and ensure that a variety of assessment modes are used, irrespective of a student's course choices.
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An empirical study of tissue banking in Australia: Navigating regulatory and ethical challenges
23 June 2014University of SydneyClark, G;Lipworth, W;Bokey, L;Little, M;Kerridge, ICollections of tumour samples can be an invaluable resource for medical research. There are, however, numerous ethical and legal challenges associated with tumour banking. While there has been extensive discussion of these issues in the legal and ethical literature, there are few available empirical data in relation to the activities of tumour banks in Australia, their practices around ethically charged issues, and their success in implementing complex regulatory guidelines. The aim of this study was to gain more information about the activities of tumour banks in New South Wales, Australia, with a particular focus on their management of, and attitudes towards, ethical and regulatory issues. A survey of 27 tumour collection and research facilities was conducted using a 55-item questionnaire. There is significant heterogeneity of research methodologies as well as of methods for gaining consent and ensuring donor privacy, and there is general concern among the research community about ethical and regulatory issues related to tumour banking. Heterogeneity of practice and uncertainty about ethical and regulatory requirements is problematic in its potential to hinder research and its potential to generate the space for unethical practice, whether intentional or unintentional. There is a pressing need to address these issues so that tumour banks can be used in the most ethical and efficient way possible.
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An empirical reappraisal of public trust in biobanking research: rethinking restrictive consent requirements
23 June 2014University of SydneyLipworth, W;Morrell, B;Irvine, R;Kerridge, ICollections of human tissue removed from patients in the course of medical diagnosis or therapy are believed to be an increasingly important resource for medical research (biobank research). As a result of a number of tissue-related "scandals" and increasing concern about ownership and privacy, the requirements to obtain consent from tissue donors are becoming increasingly stringent. The authors' data show that members of the general public perceive academic biobank researchers and their institutions to be highly trustworthy and do not see the need for recurrent, project-specific consent. They argue, on the basis of their empirical findings, that we should question the trend, at least in some settings, toward ever more stringent consent requirements for the use of tissue in research. They argue that this approach, while perhaps counterintuitive in the current regulatory environment, can be both ethically and legally sound so long as channels of communication are maintained and third-party relationships are tightly controlled.
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Towards a dialogical ethics of interprofessionalism
23 June 2014University of SydneyIrvine, R;Kerridge, I;McPhee, JContemporary medical practice brings a diverse range of professions and disciplines together in greater and closer contact. This situation of increasing complexity and changing professional roles gives rise to multifaceted ethical dilemmas and theoretical and practical concerns. In this essay we argue that for multidisciplinary relationships to be facilitated and to progress towards interdisciplinary teamwork, moral agents have to go beyond orthodox ethical systems and appeal to normative theory. We will argue that conceptualising ethics as a shared social practice may provide a useful starting point. This dialogic approach places greater emphasis on open deliberation and the articulation, negotiation, exploration and generation of new ethical perspectives in the here and now of clinical practice.
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Why drug shortages are an ethical issue
26 June 2014University of SydneyKerridge, I;Lipworth, WDrug shortages are a growing problem in developed countries. To some extent they are the result of technical and organisational failures, but to view drug shortages simply as technical and economic phenomena is to miss the fact that they are also ethical and political issues. This observation is important because it highlights both the moral and political imperative to respond to drug shortages as vigorously as possible, and the need for those addressing shortages to do so in ethically and politically sophisticated ways. This brief article outlines the ethical issues that need to be considered by anyone attempting to understand or address drug shortages.
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Forget tea and biscuits, why should doctors get any gifts from pharma companies?
01 August 2014University of SydneyLipworth, W;Kerridge, IThe Australian Medical Association (AMA) and medical specialist groups are currently debating public disclosure of gifts received by doctors from pharmaceutical companies. The bone of contention is how valuable the freebies need to be before the doctor has to declare them. The debate has arisen in the context of a review of Medicines Australia’s Code of Conduct – a document produced collectively on behalf of the Australian pharmaceutical industry to guide the behaviour of member companies. In keeping with similar moves overseas, Medicines Australia is proposing to mandate disclosure of gifts and payments to doctors, starting in 2015, and is currently seeking stakeholder input into the technicalities of such a move.
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EBM and Epistemological Imperialism: Narrowing the divide between evidence and illness
07 August 2014University of SydneyCrowther, H;Lipworth, W;Kerridge, IEvidence Based Medicine (EBM) is an approach to clinical practice that relies on the use of systematically reviewed published clinical research of high quality. Whilst there is some speculation as to whether a true consensus definition of EBM exists (Loughlin (2008)(1)), a commonly cited explanation “the conscientious, explicit, and judicious use of current best evidence in making decisions about the care of individual patients’ (Sackett et al (1996)(2)). Most approaches to “EBM” incorporate the use of an evidence hierarchy that presupposes that some forms of evidence are better than others (Guyatt and Rennie (2002)(3)), that meta-analyses and randomised controlled trials (RCTs) will guide a better level of care than expert or local knowledge. Although EBM is pervasive throughout all health literature a number of ethical (Gupta (2009)(4)), epistemological (Loughlin (2008)(1)), and clinical practice critiques (Tobin (2008)(5)) have emerged. Criticisms of EBM on ethical grounds have previously been summarised by Kerridge (2010)(6) and include ; “that the implicit and explicit requirement for RCTs may lead to unnecessary research being done where sufficient evidence already exists;... that methods privileged by EBM, most notably the RCT, are methodologically unable to answer questions related to individual patients;.... that evidence hierarchies are inadequate and misleading;.... that the dataset that EBM draws from is systematically bias[ed],.... that the translation of evidence into practice through clinical practice guidelines and decision aids is both ethically and epistemologically problematic...[and] that evidence is not value-neutral and cannot be easily translated into practice.”
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Do consumer groups really advocate for the public interest?
09 August 2014University of SydneyLipworth, W;Kerridge, IThe Guardian recently claimed to have exposed an attempt by a number of pharmaceutical companies to thwart efforts by the European drug regulator (the European Medicines Agency) to have all clinical trial data made available to the public. The tactic is apparently being used by industry, and coordinated by the Pharmaceutical Research and Manufacturers of America (PhRMA) and the European Federation of Pharmaceutical Industries and Associations (EFPIA). The idea is to mobilise patient advocacy groups to campaign against greater transparency on the grounds that information might be misinterpreted and cause health scares. Several companies have denied using such a strategy, while others have refused to comment.
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Abandoning clinical trial safeguards won’t boost local industry
09 August 2014University of SydneyKomesaroff, P;Thomson, C;Kerridge, ITesting new drugs in clinical trials is a billion-dollar industry in Australia, with most of the money coming from international pharmaceutical companies. But as investment grows in India, China, and other emerging competitors, some people argue we need to make Australia more attractive to such investment. One of their solutions is to water down the ethics approval process.
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Eliciting views of Australian Pharmaceutical industry employees on collaboration and the concept of Quality Use of Medicines
14 August 2014University of SydneyWang, N;Lipworth, W;Ritchie, J;Williams, K;Day, RBackground: Pharmaceutical industry involvement in biomedicine has produced major benefits but has also caused concern. At present, there is no consensus as to how medical and government organizations should relate to the pharmaceutical industry and this is partly due to the absence of systematic study of the various alternatives. In Australia industry cooperation has been elicited via the “Quality Use of Medicines” framework within the “National Medicines Policy”. Little is known about the way employees of pharmaceutical companies respond to the QUM policy and strategies. Aims: We aimed to examine the engagement of the Australian pharmaceutical industry with QUM with a view to assisting medical, government and consumer organisations who may wish to collaborate with industry. Methods: We carried out a qualitative study using in-depth, semi-structured interviews with industry employees, primarily from medical and regulatory affairs departments. Results: Employees of pharmaceutical companies claim that collaboration is important, and that they are altruistic and committed to QUM. At the same time, there is little evidence from this study to support the notion that QUM has brought about structural changes to industry or is positioned as the central goal or framework in designing a company’s operational strategies. Moreover, there is a significant degree of ambivalence towards governments and medical organisations. Conclusions: Employees within the pharmaceutical industry claim a commitment to collaboration and QUM. While these claims cannot be taken entirely at face value, there is potential for meaningful collaboration with industry. Keywords Pharmaceutical industry Pharmaceutical ethics Quality of healthcare Health policy Pharmacology
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How Pharmaceutical Industry Employees Manage Competing Moral Commitments
18 August 2014University of SydneyLipworth, W;Montgomery, K;Little, MThe pharmaceutical industry has been criticised for pervasive misconduct. These concerns have generally resulted in increasing regulation. While such regulation is no doubt necessary, it tends to assume that everyone working for pharmaceutical companies is equally motivated by commerce, without much understanding of the specific views and experiences of those who work in different parts of the industry. In order to gain a more nuanced picture of the work that goes on in the “medical affairs” departments of pharmaceutical companies, we conducted 15 semi-structured interviews with professionals working in medical departments of companies in Sydney, Australia. We show that this group of pharmaceutical professionals are committed to their responsibilities both to patients, research participants, and the public and to their companies. Despite the discrepancies between these commitments, our participants did not express much cognitive dissonance, and this appeared to stem from their use of two dialectically related strategies, one of which embraces commerce and the other of which resists the commercial imperative. We interpret these findings through the lens of institutional theory and consider their implications for pharmaceutical ethics and governance. Keywords: Qualitative research; Social values; Pharmaceutical industry; Pharmaceutical ethics
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Shifting power relations and the ethics of journal peer review
18 August 2014University of SydneyLipworth, W;Kerridge, IBackground: Peer-review of manuscripts has recently become a subject of academic research and ethical debate. Critics of the review process argue that it is a means by which powerful members of the scientific community maintain their power, and achieve their personal and communal aspirations, often at others’ expense. This qualitative study aimed to generate a rich, empirically-grounded understanding of the process of manuscript review, with a view to informing strategies to improve the review process. Method: Open-ended interviews were carried out with 35 journal editors and peer reviewers in the UK, USA and Australia. Results: It is clear from this research that relations of power and epistemic authority in manuscript review are complex and dynamic, may have positive and negative features and that even where power is experienced as controlling, restrictive and illegitimate, it can also be resisted. Conclusions: The manuscript review process is best thought of not in terms of simple dominance of reviewers and editors over authors, but rather as a shifting ‘net’ of power relations. These complex power relations need to be understood if reviewers are to be encouraged to participate in the process and to do so in the the most ethical and effective manner.
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Have we reached the limit of effectiveness of self-regulation and codes of ethics?
26 August 2014University of SydneyKerridge, I;Komesaroff, P;Lipworth, WOver the past decade, both the health-care professions and the pharmaceutical industry have revised the codes governing their interaction. These adjustments were responses to changing public standards and to data demonstrating the adverse impact of such interactions on prescribing behaviour and on health spending. Now the relationships between health professions and industry are more tightly regulated than ever before. They’re characterised by a commitment to transparency and to processes that avoid conflicts of interest – more than at any time in the past. Perhaps the two most significant sets of guidelines governing interaction between doctors and the pharmaceutical industry - the Royal Australasian College of Physician’s “Guidelines for relationships between physicians and industry” and the “Code of Conduct” of Medicines Australia (the peak industry group for the pharmaceutical industry) – are currently under review. It’s clear that each body will likely introduce incremental changes to the way relationships are managed in the health sector. Sadly, incremental variations achieve little and what we need is fundamental change to the ways in which medicine and medical professionals interact with industry. And despite the progress to date, promotional activities continue, often under the guise of education. Marketing data remain generally aggregated, obscuring the identities of the beneficiaries of industry support.
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Remove industry bias from clinical trials before it’s too late
26 August 2014University of SydneyDunn, A;Kerridge, I;Lipworth, WA study published today shows that clinical trials with industry sponsorship report greater benefits and fewer harmful side effects. In the discussion, the authors note that most reviews and guidelines don’t report the funding sources for the included trials. The systematic review adds to a growing body of evidence that industry sponsorship of research influences the results of that research. This new work is consistent with previous systematic reviews on the effects of industry sponsorship conducted over the past 20 years. The evidence is clear – industry can obtain results favourable to their products by influencing how trials are designed and reported. And there are many stories about bad behaviour from Big Pharma. The drug oseltamivir (Tamiflu), which is used to relieve symptoms and reduce the complications of influenza, for instance, is stockpiled by governments around the world at the cost of billions of dollars. There’s currently an open data campaign to get Roche to share data from its clinical trials of the drug. It’s suspected that the data that have not been released may reveal both serious side effects and less-than-stellar effectiveness.
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From Project to Strategic Vision: Taking the Lead in Research Data Management Support at the University of Sydney Library
10 October 2014University of SydneyNorman, Belinda;Stanton, Kate ValentineThis paper explores three stories, each occurring a year apart, illustrating an evolution toward a strategic vision for Library leadership in supporting research data management at the University of Sydney. The three stories describe activities undertaken throughout the Seeding the Commons project and beyond, as the establishment of ongoing roles and responsibilities transition the Library from project partner to strategic leader in the delivery of research data management support. Each story exposes key ingredients that characterise research data management support: researcher engagement; partnerships; and the complementary roles of policy and practice.
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Structural elements in achieving legislative tobacco control in NSW, 1955-95: political reflections and implications.
31 October 2014University of SydneyHooker, C;Chapman, SimonObjective: To analyse structural factors revealed by politicians that shaped legislation on tobacco control in New South Wales, 1955-1995. Methods: Parliamentary debates and other records were collected. Open-ended interviews were conducted with 17 of the Members of Parliament (MPs) and health advocates who were significantly involved, and analysed for structural elements. Results: Tobacco industry lobbying had a significant but limited influence on policymaking, being exerted largely through social interactions with executives and based on concerns for the economic impacts on third parties. MPs saw health advocates’ chief functions as (1) generating community concern about the issue and support for control measures, and (2) bringing any new information to political attention, providing pro-control arguments and data through the media. Factors that delayed tobacco control policies included: the conservative stance of Premiers and major parties, commitments to unanimous federal action, and rivalry between parties. Factors that facilitated control policies included: reforms that gave the Legislative Council increased power, the use of Parliamentary committees, and backbencher and grass roots support. Conclusions: Tobacco control policy and legislation has been the product of political structures that gave power to those MPs in the least powerful positions – minor parties, Members of the Legislative Council (MLCs), backbenchers, women and party rank and file – rather than to major parties and their executives. Implications: Advocates should make the most of their access points to the political process, providing information, arguments and support to interested backbenchers, party and parliamentary health committees, the health ministers’ conference, minor parties and independents, and demonstrating public opinion in favour of further control.
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A review of strategies to improve rational prescribing in asthma.
06 January 2015University of SydneyInam, S;Lipworth, W;Kerridge, I;Day, RBackground: There are well-recognised gaps between evidence-based recommendations and prescribing practices in asthma. While different strategies have been devised to improve rational prescribing, the impact of these is uncertain. Aim: To examine the characteristics and effectiveness of strategies to improve rational prescribing in asthma. Method: We systematically searched electronic databases to find studies that reported on strategies to improve prescribing in asthma, or included rational prescribing as one of the main components of the program. Results: There were thirteen relevant studies. All of the strategies described in these studies involved physician education using a variety of modalities; two of the trials also included patient-specific prescribing direction. Twelve of thirteen studies reported improved prescribing practice. There was significant heterogeneity in the interventions and outcome criteria employed by the studies. Conclusion: Strategies to improve rational prescribing in asthma show promise, but the significant methodological heterogeneity, and the absence in most cases of demonstrable clinical benefit, raise concerns about their applicability in clinical practice. Keywords: asthma, inappropriate prescribing, medication therapy management, physician's practice patterns, quality improvement
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What is health promotion ethics?
12 January 2015University of SydneyCarter, SMWhat does it mean to think about the ethics of health promotion? When most of us think ‘ethics’ we think of the Human Research Ethics Committee applications required for research projects. But I’m thinking of something quite different here: the ethics of health promotion practice. Health promotion ethics is an attempt to answer questions such as: Can we provide a moral justification for what we are doing in health promotion? or What is the right thing to do in health promotion, and how can we tell? As other authors have argued, sometimes these questions are ignored in health promotion in favour of scientific and technical questions about effectiveness. But there is increasing recognition that health promotion is a moral project, that health promotion can be practised in ways that are more or less ethical, and thus that considering ethics in health promotion is just as important as – and related to – considering the evidence about whether or not health promotion works. 1-5 The number of publications about health promotion ethics has been slowly increasing since the 1980s, including in this journal, where authors have particularly argued the importance of being explicit about values in health promotion. If something has value, it has worth or importance. 6 Authors in the HPJA have suggested that health promotion practitioners value: health and wellbeing as opposed to the mere absence of disease, justice, environmental sustainability, empowerment, respect for culture, and truth telling. 3, 7, 8 But concern has been expressed that although these things are valued in health promotion, this may not always influence the way that health promotion is implemented and evaluated.
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Doing good qualitative research in public health: not as easy as it looks.
12 January 2015University of SydneyCarter, SM;Ritchie, JE;Sainsbury, PIn this paper, we discuss qualitative research for public health professionals. Quality matters in qualitative research, but the principles by which it is judged are critically different from those used to judge epidemiology. Compared to quantitative research, good quality qualitative studies serve different aims, answer distinct research questions and have their own logic for sampling, data collection and analysis. There is, however, no need for antagonism between qualitative research and epidemiology; the two are complementary. With theoretical and methodological guidance from experienced qualitative researchers, public health professionals can learn how to make the most of qualitative research for themselves.
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Enhancing Citizen Engagement in Cancer Screening Through Deliberative Democracy
14 January 2015University of SydneyRychetnik, L;Carter, SM;Abelson, J;Hazel, T;Barratt, A;Entwistle, V;Mackenzie, G;Salkeld, G;Glaziou, PCancer screening is widely practiced and participation is promoted by various social, technical, and commercial drivers, but there are growing concerns about the emerging harms, risks, and costs of cancer screening. Deliberative democracy methods engage citizens in dialogue on substantial and complex problems: especially when evidence and values are important and people need time to understand and consider the relevant issues. Information derived from such deliberations can provide important guidance to cancer screening policies: citizens’ values are made explicit, revealing what really matters to people and why. Policy makers can see what informed, rather than uninformed, citizens would decide on the provision of services and information on cancer screening. Caveats can be elicited to guide changes to existing policies and practices. Policies that take account of citizens’ opinions through a deliberative democracy process can be considered more legitimate, justifiable, and feasible than those that don’t.
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Personal genomics as an interactive web broadcast
28 January 2015University of SydneyNewson, A.J.Personal genomics and whole-genome sequencing are rapidly becoming established on the spectrum of genomic research and service provision. It appears that we do in fact possess curiosity about our genomes, enough to prompt many to purchase DTC testing and more to consider it. McGuire and colleagues' study (2009) and Lee and Crawley's reflection (2009) provide a useful snapshot of emerging issues in personal genomics. Yet the momentum of these technologies suggests we need to act quickly in deliberating their implications. This commentary will draw out and provide some initial reflection on some of the key ethical issues arising in DTC genomics. This will incorporate an analysis of an online personal genomics broadcast that has recently taken place in the United Kingdom: the Routes Game. Additionally, a claim is advanced that further empirical reflection on DTC genomics should rest on a strong theoretical ethical foundation.
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Clinical ethics consultation in Europe: A comparative and ethical review of the role of patients
30 January 2015University of SydneyFournier, F;Rari, E;Førde, R;Neitzke, G;Pegoraro, R;Newson, A.J.Clinical ethics has developed significantly in Europe over the past 15 years and remains an evolving process. While sharing our experiences in different European settings, we were surprised to discover marked differences in our practice, especially regarding the position and role of patients. In this paper, we describe these differences, such as patient access to and participation or representation in ethics consults. We propose reasons to explain these differences, hypothesizing that they relate to the historic and sociocultural context of implementation of clinical ethics consultation services (Cecs), as well as the initial aims for which each structure was established. Then, we analyse those differences with common ethical arguments arising in patient involvement. We conclude that there is no unique model of best practice for patient involvement in clinical ethics, as far as Cecs reflect on how to deal with the challenging ethical issues raised by patient role and position.
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Communication of genetic information within families: the case for familial comity
02 February 2015University of SydneyDavey, A;Newson, A.J.;O’Leary, PAdvances in genetic technologies raise a multitude of ethical issues, some of which give rise to novel dilemmas for medical practice. One of the most controversial problems arising in clinical genetics is that of confidentiality and who may disclose genetic health information. This paper considers the question of when it is appropriate for health professionals to disclose clinically significant genetic information without patient consent. Existing ethical principles offer little guidance in relation to this issue. We build on suggestions that genetic information may be viewed as collective or shared information, and we introduce the concept of ‘familial comity’ as a fresh way to consider the issues. Keywords: Genetics, Ethics, clinical, Confidentiality, Family, Genetic privacy
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Whose genome is it anyway? Ethics and whole genome sequencing before birth
23 March 2015University of SydneyNewson, A.J.Geneticist Razib Khan's decision to obtain the whole genome sequence of his partner's fetus in utero shows us that genomics is no longer a fantasy. While it would be a mistake to use this one example to condemn the entire practice of whole genome sequencing (WGS) prior to birth, I will suggest here why we should look before we leap regarding prenatal WGS. If you lean towards the permissive with respect to genomics, this sequencing event may not be a big deal. Genomic sequencing technology is now fast and cheap. Long-held paradigms such as non-directiveness and respecting children's future autonomy may no longer apply when sequence information is becoming almost mundane and is striding into new healthcare domains. Presumptions of bodily integrity and reproductive autonomy in pregnancy may further diminish concerns – after all, we have very few justifiable thresholds for interfering in decision-making during pregnancy and the harm to the future child that may occur here would be unlikely to reach them. I think a bit differently to this and advocate a (future) child-centred approach; one which rejects technological imperatives to obtain whole sequences before birth just because we can. WGS will soon be cheaper than testing for one or a few genes and this is certainly a welcome development. But while high throughput methods might be chosen, they should not necessarily dictate the information that is provided. Genomics will bring a significant change in the volume of information received and we won't know for some time what it all means. Genomics also won't ever be able to tell us everything about our health. While Khan may have been able to analyse his son's own genome, this skill will not be within everyone's reach. And while genome sequencing is cheap, interpretation and data storage are not.
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Communities of interest: issues in establishing a digital resource on Murrinh-patha song at Wadeye (Port Keats), NT
12 April 2015University of SydneyBarwick, Linda;Marett, Allan;Walsh, Michael;Reid, Nicholas;Ford, LysbethLinguistics and musicology, along with other fieldwork-based disciplines, have obligations to facilitate access to research results by the communities whose cultural heritage is recorded and analysed, especially when the languages and musics in question are otherwise little documented, have few speakers or performers, and are threatened by the global dominance of English. This paper presents early results of our planning for establishment of a digital resource to preserve and make accessible recordings and other documentation of Murrinh-patha public dance-songs at Wadeye, a remote Indigenous community in Australia’s Northern Territory. With the recent establishment of the Wadeye Knowledge Centre, copies of recordings previously left in the community by researchers have been digitized and made available through computer workstations. Many of these digitized recordings, however, have poor or no documentation and thus are difficult to locate and access. The most urgent task is to work with elderly performers and composers to assemble metadata about the oldest recordings of songs and who composed and performed them. In order to maximise local accessibility and use, both elders and young people will be involved in planning and creation of a bilingual search interface to the collection. Planning must also consider sustainability issues through integration with other local initiatives, appropriate use of open standards and formats, locally sustainable technical platforms, and regular backup and maintenance.
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Guidelines on Collaborative Research and Authorship
25 April 2015University of SydneyThe Centre for Values, Ethics and the Law in Medicine (Sydney Health Ethics)Collaboration can be one of the best things about academic life and one of the most difficult. The difficulties mostly appear when academics try to publish together. Guidelines cannot cover all contingencies or always fix authorship troubles. But there are things they can do. They can articulate the virtues and values that we think are important in research and publication and they can provide principles and processes for action. This guideline was developed at the Centre for Values, Ethics and the Law in Medicine (VELiM) at the University of Sydney, Australia. It is intended to support researchers in collaborative projects to assign authorship and resolve authorship disputes. It sets out nine principles, a process for having a conversation and reaching agreement, and a process for dealing with disputes. Publication ethics are important in sole authorship. However the processes described here apply only to collaborative authorship. As collaborative authorship is more common in the sciences and social sciences, these guidelines may be less relevant to the humanities. But whenever researchers collaborate, irrespective of their disciplinary background, the principles articulated in these guidelines will apply
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Text messaging is a useful reminder tool
27 May 2015University of SydneyBalzer, B.W;Kelly, P.J;Hazell, P;Paxton, K;Hawke, C;Steinbeck, K.SIntroduction Longitudinal studies of adolescents must be ‘adolescent-friendly’, to collect data and to encourage maintenance in the study cohort. Text messaging may offer a feasible means to do both. Methods Adolescents in the Adolescent Rural Cohort, Hormones and Health, Education, Environments and Relationships (ARCHER) study (n=342) are sent automated text messages every 3 months, prompting biological specimen collection. Results A total of 99.2% of participants (or their parents) owned a mobile phone, of which 89.1% of participants responded to text messages and 97.3% of intended urine samples were collected. The average time to provide a urine sample after prompting correlated with time to reply to Short Message Service (SMS). Conclusions This study shows SMS can be used effectively in longitudinal research involving adolescents and is feasible and useful as a reminder tool for regular biological specimen collection.
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Propaganda or cost of innovation? The high price of new drugs
18 June 2015University of SydneyGhinea, N;Kerridge, I;Lipworth, WEver wonder how much it costs to develop a new drug? The independent, non-profit research group, The Tufts Center for the Study of Drug Development, estimates US$2.6 billion, almost double the centre’s previous estimate a decade ago. But how accurate is this figure? While the details of the study remain a secret, a press release, slideshow and background document on the Tufts website provide some insight into how this figure was calculated. Interestingly, only slightly more than half of this cost is directly related to research and development (R&D). US$1.2 billion are “time costs” – returns that investors might have made if their money wasn’t tied up in developing a particular drug. As expected, these costings have attracted the attention of policymakers, consumer advocates and critics of big pharma. In the New England Journal of Medicine, Harvard University Professor of Medicine Jerry Avorn questions several assumptions underpinning the Tufts costing – particularly the unverifiable claim that up to 80% of compounds are abandoned at some point during development.
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Parents with Intellectual Disability in a Population Context
09 July 2015University of SydneyLlewellyn, Gwynnyth;Hindmarsh, GabrielleParenting by people with intellectual disability continues to confront societal sensibilities. On the one hand, parents with intellectual disability engage in the valued social role of raising children; on the other, their parenting attracts (typically negative) attention based on an expectation of their limited capacities to parent. The literature primarily addresses the question of whether or not parents with intellectual disability can be adequate parents or reports on methods for improving their parenting skills. An emerging trend in the literature over the last decade takes a different perspective. Rather than concentrating exclusively on parents with intellectual disability, this perspective focuses on their parenting situation compared to that of other parents more generally. This paper reviews the current state of knowledge about parents and parenting with intellectual disability in this broader population context. The focus of the paper is on the use of larger scale datasets to understand the situation of parents with intellectual disability compared with other parents and to examine the contextual variables that influence their parenting.
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Eligibility, the ICF and the UN Convention: Australian perspectives
15 July 2015University of SydneyMadden, Rosamond H;Glozier, Nick;Mpofu, EliasThe UN Convention on the Rights of Persons with Disabilities, in Australia, acts as a philosophical and moral statement and framework guiding integrated and strategic policy across the nation. Broad policy agreement has been reached by governments, and both the government and non-government sectors are developing strategies for implementation or evaluation. There is however a need for a more integrated approach to disability policy and information, reflecting all three components of the Italian project: • legislation and a high level philosophical framework and policy guide; • a technical framework that can underpin specific policies and programs aiming to achieve the major goals; and , • a language and set of tools, relating to both the above, that provide infrastructure for assessment methods and information systems. The International Classification of Functioning, Disability and Health (ICF) is the ideal tool to support the latter two components, consistent with the UN Convention. While the ICF has been used as the basis for national data standards, in population surveys and in the national data collection on disability support services, there is considerable scope for greater use of it, including using all domains of the Activities and Participation and the Environmental Factors component for policy, information and service provision, to advance a disability-inclusive society. Information available from the income support system and from generic services could be enhanced by reference to the ICF components. It would be of significant national value in Australia, especially as a ‘continuum of care’ is desired, if consistency of concepts and information were expanded across health and social welfare sectors. It would then be possible to obtain consistent data from health, aged care, disability and community services systems about key aspects of health and functioning, building a consolidated picture of access and experience across these sectors. Without attention to all three components of the Italian project and continuing effort to meet the challenges identified in this paper, it will not be possible to determine whether the goals of Australia’s National Disability Agreement or the ambitions of the Convention are achieved.
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Incorporating evidence and politics in health policy: Can institutionalising evidence review make a difference?
12 January 2016University of SydneyFlitcroft, K;Gillespie, J;Carter, SM;Salkeld, G;Trevena, LMuch of the evidence translation literature focuses narrowly on the use of evidence in the initial policy formulation stages, and downplays the crucial role of institutions and the inherently political nature of policy making. More recent approaches acknowledge the importance of institutional and political factors, but make no attempt to incorporate their influence into new models of evidence translation. To address this issue, this article uses data from a comparative case study of bowel cancer screening policy in Australia, the United Kingdom and New Zealand, to propose alternative models of evidence incorporation which apply to all stages of the policy process.
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Supporting research translation through partnership
01 March 2016University of SydneyLum, Margaret N.;Todd, Angela L.;Porter, Maree;Matha, Deborah V.This paper provides a brief introduction to research translation in health care and three essential building blocks that support the process of using evidence to inform health policy and practice: partnerships, system readiness and diversity of evidence. We then describe a ‘live’ example of research translation currently underway between a research group and policy makers working together to support maternity care in NSW, and the important facilitating role of a shared knowledge broker.
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Justifying Knowledge, Justifying Method, Taking Action: Epistemologies, Methodologies, and Methods in Qualitative Research
14 March 2016University of SydneyCarter, SM;Little, MIn this article, the authors clarify a framework for qualitative research, in particular for evaluating its quality, founded on epistemology, methodology, and method. They define these elements and discuss their respective contributions and interrelationships. Epistemology determines and is made visible through method, particularly in the participant— researcher relationship, measures of research quality, and form, voice, and representation in analysis and writing. Epistemology guides methodological choices and is axiological. Methodology shapes and is shaped by research objectives, questions, and study design. Methodologies can prescribe choices of method, resonate with particular academic disciplines, and encourage or discourage the use and/or development of theory. Method is constrained by and makes visible methodological and epistemic choices. If we define good quality qualitative research as research that attends to all three elements and demonstrates internal consistency between them, standardized checklists can be transcended and innovation and diversity in qualitative research practice facilitated. Keywords: Qualitative research, research design, epistemology, methodology, method, research quality, evidence-based medicine
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UniLogistic: A SAS Macro for Descriptive and Univariable Logistic Regression Analyses. [Code Snippet].
04 April 2016University of SydneyDhand, Navneet K.Descriptive and univariable logistic regression analyses are essential before constructing multivariable models, but are very time consuming, particularly if a large number of explanatory variables are to be evaluated. A macro UniLogistic is described in this paper that conducts descriptive and univariable logistic regression analyses (binomial, ordinal or nominal, as required) in SAS and presents results in formatted tables in Excel and graphics in PDF files. Implementation of the macro is illustrated in this paper using example datasets from statistics and epidemiology textbooks. Keywords: binomial, ordinal, multinomial, cumulative logit, generalized logit, graphical summaries, summary statistics, SAS
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Towards a bioethics of innovation
07 April 2016University of SydneyLipworth, W;Axler, RIn recent years, it has become almost axiomatic that biomedical research and clinical practice should be ‘innovative’—that is, that they should be always evolving and directed towards the production, translation and implementation of new technologies and practices. While this drive towards innovation in biomedicine might be beneficial, it also raises serious moral, legal, economic and sociopolitical questions that require further scrutiny. In this article, we argue that biomedical innovation needs to be accompanied by a dedicated ‘bioethics of innovation’ that attends systematically to the goals, process and outcomes of biomedical innovation as objects of critical inquiry. Using the example of personalised or precision medicine, we then suggest a preliminary framework for a bioethics of innovation, based on the research policy initiative of ‘Responsible Innovation’. We invite and encourage critiques of this framework and hope that this will provoke a challenging and enriching new bioethical discourse.
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Community treatment orders in Australia: rates and patterns of use.
16 May 2016University of SydneyLight, E;Kerridge, I;Ryan, C;Robertson, MObjectives: Community treatment orders (CTOs) allow clinicians to provide unconsented outpatient treatment to people living with mental illness. Though controversial and of uncertain efficacy, CTOs are used throughout Australia and internationally. We sought to determine the prevalence of CTO use in Australian states and territories, and to examine changes in the pattern of use over time. Method: Australian state and territory mental health review tribunals and health departments were surveyed for the most recent annual data on the total number of CTOs made and the total number of individual people placed on a CTO. Results: Rates of CTO use range from 30.2 per 100,000 population (in Tasmania) to 98.8 per 100,000 population (in Victoria). Use of CTOs in Australia is high by world standards, appears to be increasing over time, and varies significantly across jurisdictions. Conclusions: The high (by world standards), increasing and variable use of CTOs in Australia is concerning and raises important implications for mental health policymakers and legislators. Current mental health policy activity, particularly the new National Mental Health Commission, provides a unique opportunity to enhance transparency and accountability if regular and nationally uniform CTO data are collected and publically reported. Key words: Community treatment order, compulsory community treatment, community mental health, legislation, policy
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Access to the Kidney Transplant Waiting List – a time for reflection
17 May 2016University of SydneyPussell, B;Bendorf, A;Kerridge, IThe limited availability of deceased donor kidneys for transplantation in Australia continues to be a matter of concern. Analysis of registry data suggests that the current renal transplant waiting list under-represents the real demand for three reasons. Firstly, a very low proportion of dialysis patients across all age groups are wait-listed for kidney transplantation; secondly, the percentage of dialysis patients listed for transplantation has fallen over time across all Australian states and territories; and thirdly, the number of patients wait-listed varies significantly across the country. We explore possible reasons for these issues and call for new eligibility criteria that are both transparent and justifiable and balance equity and utility.
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Simple HRIR Filter Achieved with the Data of KEMAR
06 June 2016University of SydneyLi, Junting JrThe HRIR filters are widely used in many fields today, for example, some ASMR recordings and stereo songs mixing. My function provides a simple HRIR filter that could make a mono recording mixed into a stereo, binaural recording with relatively accurate positioning using the data of Knowles Electionics Mannequin for Acousitc Research (KEMAR).
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Intractable difficulties in caring for people with Sickle Cell Disease
23 June 2016University of SydneyCrowther, H;Kerridge, IBergman and Diamond (2013) have articulately and accurately identified many of the reasons why, and the problems associated with, the identification of people with sickle cell disease (SCD) as “difficult patients.” In our view, however, by suggesting that this problem is best dealt with through an ethics service consultation (ESC), they misconstrue the source of the difficulties of SCD and fail to appreciate the limitations of bioethics in seeking to improve the health care experience of people living with SCD. We provide empirical data describing an Australian perspective of SCD care, which highlights not only the complex issues raised by this illness but the challenges it creates for medical decision making and for bioethics. We suggest that the difficulties of SCD are protean in nature and that more can be gained from thinking again about the limits of bioethics and contemporary medicine than it can by seeking solace in clinical ethics consultation.
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The e-portfolio continuum: Discovering variables for e-portfolio adoption within music education
28 June 2016University of SydneyTaylor, John;Dunbar-Hall, Peter;Rowley, JenniferThis article presents the results of audit data compiled from a case study introducing e-portfolios into a Music Education degree program, and highlights the key challenges faced from the initial stages of student use to curricular embedding and student adoption. This article discusses the technological, social and educational impacts inherent in a student’s adoption of e-portfolios within a degree program, and critically, shows how training for e-portfolio use must manage these complex,interrelated imbalances on an individual student basis.
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Oral chronic graft-versus-host disease (GvHD) in Australia: clinical features and challenges in management
30 June 2016University of SydneyHull, K;Ritchie, D;McCullough, M;Avery, S;Kerridge, I;Szer, JData from the Australasian Bone Marrow Transplant Recipient Registry show a steady increase in the number of allogeneic haemopoietic stem cell transplantations (HSCT) performed annually in Australia and New Zealand. In 2012, 629 allogeneic HSCT were performed. Allogeneic HSCT is associated with numerous potential complications, including chronic graft-versus-host disease (cGVHD). The oral cavity is one of the most frequent sites affected by cGvHD, often leading to significant disability and reduced quality of life. Management strategies are often complex, of variable efficacy and influenced by the availability of various therapeutic agents, access to compounding pharmacies and associated costs. This paper summarises the current status of allogeneic HSCT in Australia and New Zealand with a focus on oral cGvHD and the associated challenges in its management. Key words: graft-versus-host disease, oral mucosa, saliva.
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Multimodal pricing and optimal design of urban public transport: the interplay between traffic congestion and bus crowding
06 July 2016University of SydneyHensher, David A.;Tirachini, Alejandro;Rose, John MThe interplay between congestion and crowding externalities in the design of urban bus systems is identified and analysed. A multimodal social welfare maximisation model with spatially disaggregated demand is developed, in which users choose between travelling by bus, car or walking in a transport corridor. Optimisation variables are bus fare, congestion toll, bus frequency, bus size, fare collection system, bus boarding policy and the number of seats inside buses. We find that optimal bus frequency results from a trade‐off between the level of congestion inside buses, i.e., passengers’ crowding, and the level of congestion outside buses, i.e., the effect of frequency on slowing down both buses and cars in mixed‐traffic roads. A numerical application shows that optimal frequency is quite sensitive to the assumptions on crowding costs, impact of buses on traffic congestion, and overall congestion level. If crowding matters to users, buses should have as many seats as possible, up to a minimum area that must be left free of seats. If for any other reason planners decide to have buses with fewer seats than optimal (e.g., to increase bus capacity), frequency should be increased to compensate for the discomfort imposed on public transport users. Finally, the consideration of crowding externalities (on both seating and standing) imposes a sizeable increase in the optimal bus fare, and consequently, a reduction of the optimal bus subsidy.
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Stated preference surveys and experimental design: an audit of the journey so far and future research perspectives
07 July 2016University of SydneyHensher, David A.;Cherchi, ElisabettaThis paper is a synthesis of the discussions and ideas that were generated during the workshop on “Stated preference surveys and experimental design” at the 2014 Travel Survey Methods Conference in Leura (Australia). The workshop addressed the challenges related to the design and implementation of stated preference surveys as a way to capture richer behavioural information on the preferences of individuals and groups. The discussion began by reviewing the current state of stated preference surveys and whether and what we have been doing correctly. We then analysed the areas where improvements are still needed, how we can achieve them, and some pros and cons of each improvement.
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Contrasts of Relative Advantage Maximisation with Random Utility Maximisation and Regret Minimisation
03 August 2016University of SydneyLeong, Waiyan;Hensher, David A.This paper discusses the theoretical properties and the empirical application of an improved version of the ‘relative advantage maximising’ (RAM) model. This model shares several desirable features of a set of models based on random regret minimisation (RRM), such as parsimony and choice set dependence. Although model fit differences are small, a preliminary comparison shows that the RAM model empirically outperforms the standard random utility maximisation (RUM) model, the RRM model, and a hybrid RUM–RRM model in all eight data sets analysed. The paper concludes with a discussion of the marginal willingness to pay (WTP) measures derived from the RAM model.
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Known unknowns: building an ethics of uncertainty into genomic medicine
06 September 2016University of SydneyNewson, A.J.;Leonard, S.J.;Hall, A;Gaff, C.L.Background Genomic testing has reached the point where, technically at least, it can be cheaper to undertake panel-, exome- or whole genome testing than it is to sequence a single gene. An attribute of these approaches is that information gleaned will often have uncertain significance. In addition to the challenges this presents for pre-test counseling and informed consent, a further consideration emerges over how - ethically - we should conceive of and respond to this uncertainty. To date, the ethical aspects of uncertainty in genomics have remained under-explored. Discussion In this paper, we draft a conceptual and ethical response to the question of how to conceive of and respond to uncertainty in genomic medicine. After introducing the problem, we articulate a concept of ‘genomic uncertainty’. Drawing on this, together with exemplar clinical cases and related empirical literature, we then critique the presumption that uncertainty is always problematic and something to be avoided, or eradicated. We conclude by outlining an ‘ethics of genomic uncertainty’; describing how we might handle uncertainty in genomic medicine. This involves fostering resilience, welfare, autonomy and solidarity. Conclusions Uncertainty will be an inherent aspect of clinical practice in genomics for some time to come. Genomic testing should not be offered with the explicit aim to reduce uncertainty. Rather, uncertainty should be appraised, adapted to and communicated about as part of the process of offering and providing genomic information. Keywords Ethics Uncertainty Genomics Clinical genomics Massively parallel sequencing Genome sequencing Genomic testing Genetic counseling Rare diseases Variants of uncertain significance
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Biobanks Go Global
06 September 2016University of SydneyMason, P.H.;Lipworth, W;Kerridge, IMedical research increasingly relies on collections of donated human tissue, such as DNA samples, blood samples and solid organs and tissues. These collections of donated samples – referred to as biobanks, biorepositories or tissue banks – can be used in basic science experiments, population studies, or towards the refinement and personalisation of medical and surgical techniques. The practice of collecting and systematically organising biological samples is not new. Famous historical collections were put together by Carl Linnaeus (1707–78) in Sweden, Georges-Louis Leclerc, Comte de Buffon (1707–88) in France, and Joseph Banks (1743–1820) in England. In recent years, however, advances in experimental techniques (such as whole genome sequencing) and information technologies (such as “big data” storage and analytics) have massively increased the promise of biomedical research using collections of human biological samples. In order for the promise of biobanks to be fulfilled, large numbers of samples need to be collected, stored and analysed. Until recently, most biobanks were located within individual universities, research institutes or health facilities, and often tied to specific research projects. Increasingly, however, biobanks have become “networked” in an effort to become more sustainable and to increase their utility. Most often, these networks of biobanks draw together samples from within a country to create a single biobank that may be accessible to researchers based in different institutions and with different research interests. But even large domestic biobanks or biobank networks like these may still lack the statistical power to answer important research questions. For example, research into the genetics of rare or complex diseases often requires the analysis of samples that number in the hundreds of thousands, if not millions. Maximising the full potential of biobanks is therefore difficult within the confines of a single nation.
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A Test Unlike Any Other
07 September 2016University of SydneySavard, JMy story of direct-to-consumer personal genome testing (DTCPGT) differs from many of those published online because it was inspired not so much by a desire to understand my background or my future but by a research interest in DTCPGT itself. A desire to know what it is that is so compelling about DTCPGT. My PhD project was about understanding Australian consumers’ knowledge, attitudes, and experiences of DTCPGT. So to understand DTCPGT better I became a consumer myself. In reality, of course, my personal interest in DTCPGT dates back to when I first started studying genetics in secondary school. Indeed, had these tests been available when I first learned about DNA, I would have been among those first in line to purchase it. While that naive enthusiasm is still within me, it has been tempered over time to the extent that when I eventually had the test results before me—I didn’t look at them right away, but wondered whether I really wanted to know what it would tell me. But, I am getting ahead of myself—to understand my story, I need to explain how DTCPGT was at the core of my research but how it has also transcended it.
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Disclosure of Individual Research Results and Incidental Findings in Biobank Research: Why We need an Evidence-based Approach
04 October 2016University of SydneyFleming, J;Otlowski, M;Stewart, C;Critchley, C;Kerridge, IGlobally, genomic research is generating unprecedented advances in the understanding of the biology, pathogenetic mechanisms and prognostic markers of many cancers and is creating the possibility of precision (personalised) therapies. As more data are generated, it becomes increasingly necessary to determine the clinical significance of this data and to know when this data should be acted upon. The return of individual research results (IRRs) and incidental findings (IFs) from genomic research, in a well-informed and applicable manner, is becoming increasingly important and is already presenting practical challenges in Australian genetics clinics and familial clinics. This article argues for the need to develop an evidence-based approach to help frame ethical-legal responses to address these tensions – one that may offer flexible and defensible parameters to inform the management of disclosure of IRRs and IFs, safeguarding the health and wellbeing of tissue donors and allowing translational biobank genomic research to flourish.
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University Presses: An Australian Perspective
24 October 2016University of SydneyMrva-Montoya, AgataUniversity presses in Australia share much in common with other university presses in the world in their missions, modes of operation and history. Since the reduction of higher education funding in the 1970s, affecting universities, their presses and libraries, they have been forced to experiment with new business models and publishing strategies. Despite those pressures, the world of university presses in Australia remains diverse and vibrant, with a number of active players with different approaches who publish across academic, academic-trade and trade sectors of the market, in print and digital formats.
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Ethical review and qualitative research competence: guidance for reviewers and applicants.
03 January 2017University of SydneyMooney-Somers, Julie;Olsen, AIt is difficult to consider, describe or address the ethical issues particular to qualitative research without experience and understanding of the technicalities of qualitative methodologies. The Australian National Statement on the Ethical Conduct of Research Involving Humans charges researchers with a responsibility to demonstrate that they have the appropriate experience, qualifications and competence for their proposed research. Ethical review committees have the responsibility to judge claimed research competence. This paper provides practical guidance to researchers and review committees on using formal qualifications and training, explicit claims of competence, and markers of in/competence to assess qualitative research competence. Keywords: Qualitative research; ethical review; research ethics; competence; methodology
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Radiologists' perspectives about evidence-based medicine and their clinical practice: a semistructured interview study
20 February 2017University of SydneyTong, A;Mahady, Suzanne E;Craig, Jonathan C;Lau, Gabes;Peduto, Anthony J;Loy, ClementObjectives: To describe radiologist’s attitudes and perspectives on evidence-based medicine (EBM) and their practice. Design: Face-to-face semistructured interviews, thematic analysis. Setting: 24 institutions across six Australian states and New Zealand. Transcripts were imported into HyperRESEARCH software and thematically analysed. Participants: 25 radiologists. Results: Six themes were identified: legitimising decisions (validated justification, prioritising patient preferences, reinforcing protocols), optimising outcomes (ensuring patient safety, maximising efficiency), availability of access (requiring immediacy, inadequacy of evidence, time constraints, proximity of peer networks, grasping information dispersion), overriding pragmatism ( perceptibly applicability, preserving the art of medicine, technical demands), limited confidence (conceptual obscurity, reputation-based trust, demands constant practice, suspicion and cynicism), and competing powers (hierarchical conflict, prevailing commercial interests). Conclusions: Radiologists believe EBM can support clinical decision-making for optimal patient outcomes and service efficiency but feel limited in their capacities to assimilate and apply EBM in practice. Improving access to evidence, providing ongoing education and training supplemented with practical tools for appraising evidence; and developing evidence-based guidelines and protocols may enhance feasibility and promote the confidence and skills among radiologists in applying EBM in radiology practice for better patient care.
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Rural Carers of People with Disabilities: Making Choices to Move or to Stay
06 March 2017University of SydneyDew, Angela;Happ, Vicki;Bulkeley, Kim;Bundy, Anita;Lincoln, Michelle;Gallego, Gisselle;Brentnall, Jennie;Veitch, CraigWhen a child is born with, or an individual acquires, a disability in rural Australia, one of the decisions faced by the family is whether to remain living in a rural area or move to a larger metropolitan centre to access support services such as therapy. Understanding the factors that rural carers weigh up in making the decision to move or stay can inform the successful implementation of the National Disability Insurance Scheme (NDIS) in rural areas. Seventy-eight rural carers were recruited to participate in individual interviews or focus groups to discuss access to therapy services. Data were analysed using modified grounded theory involving thematic analysis and constant comparison. Participants made decisions about whether to stay living in their rural community or to move to a larger centre to receive therapy services according to three interlinked factors: personal factors related to their other family caring responsibilities; social factors including their informal support networks of family, friends, and community; and economic factors including employment and the time and cost of travelling to access specialist services in larger centres. These factors need to be considered in the roll-out of the NDIS to ensure that rural service users enjoy the benefit of a real choice to live in a rural area without reducing their access to support services.
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Overdiagnosis: an important issue that demands rigour and precision: Comment on Medicalisation and overdiagnosis: what society does to medicine.
17 March 2017University of SydneyCarter, SMVan Dijk and colleagues present three cases to illustrate and discuss the relationship between medicalisation and overdiagnosis. In this commentary, I consider each of the case studies in turn, and in doing so emphasise two main points. The first is that it is not possible to assess whether overdiagnosis is occurring based solely on incidence rates: it is necessary also to have data about the benefits and harms that are produced by diagnosis. The second is that much is at stake in discussions of overdiagnosis in particular, and that it is critical that work in this area is conceptually rigorous, well-reasoned, and empirically sound. van Dijk and colleagues remind us that overdiagnosis and medicalisation are not just matters for individual patients and their clinicians: they also concern health systems, and society and citizens more broadly. Keywords Overdiagnosis; Medicalisation; Overtreatment
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Digital channels for building collaborative consumption communities
11 July 2017University of SydneyGarrett, Alex;Straker, Karla;Wrigley, CaraCollaborative consumption firms leverage networked peers, communicating, collaborating and even delivering services to one another through a central marketplace channel. This raises questions as to the nature of this new form of digital channel strategy and deployment from a firm’s perspective. As a first step, this research seeks to help bridge the gap in knowledge by establishing an understanding of the digital channel usage of collaborative consumption firms. A qualitative content analysis of 30 collaborative consumption firms was conducted using multiple data sources and coded into typologies against a predetermined coding scheme. These results were then compared against existing literature on digital channel usage in regards to a wider company usage. This study identifies the digital channel usage and digital channel typology of each of the 30 firms associated within the collaborative consumption domain. The study shows a distinct increase in the use of social and community digital channels between traditional firms and collaborative consumption firms. As a result of this study, a concise definition of a collaborative consumption firm is provided, the digital channel usage of collaborative consumption firms is detailed and insights are provided for each sub-type of collaborative consumption. This study contributes to the understanding of the collaborative consumption phenomena, the business model of collaborative consumption firms and digital channels. This study assists in describing the shift from traditional firms to peer-to-peer systems. Finally, a theoretical model is provided that demonstrates the nuance of collaborative consumption channel choice within each subcategory for future researchers to test and reflect upon. This study demonstrates how collaborative consumption firms are allowing customers to drive interaction rather than traditional business-to-customer messages. A theoretical model is provided which shows contemporary marketers how to best dictate a digital channel strategy for a collaborative consumption style initiative. Contributions include: a definition of what a collaborative consumption firm and its channels pertain to and how to design a collaborative consumption digital channel strategy. This study presents a digital channel comparison between collaborative consumption firms and traditional organisations.
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Mutable spaces and unseen places: A study of access, communication and spatial control in households at Early Iron Age (EIA) Zagora on Andros
25 July 2017University of SydneyMann, Kristen PatriciaThis paper explores household spatiality using excavated household data from the Early Iron Age settlement of Zagora on Andros, in Greece. The site has extensive household remains, undisturbed by subsequent occupation, with clear evidence of an intensification of spatial arrangements during the final phase of occupation. As such, the Zagora material is well-suited to nuanced investigations of space and human behaviour. The principles of convex spatial analysis (access analysis) are employed as a first step in examining spatial arrangements and control in the context of human behaviour. Emphasis is placed on the value of access analysis as a visual (rather than quantitative) tool for exploring the use and perception of space from partially preserved household remains. This research queries how identified patterns of access and communication might have shaped the experience and social perception of household space. It examines the degree of control over sight, movement and the level of interaction between household inhabitants and the larger community. It then considers how other spatial attributes such as access to natural light, and the configuration of floor areas, hearths and other built features can help us further explore the functional and social implications of spatial arrangements. This analysis allows for the patterns, characteristics and attributes of different spatial systems to be readily and visually assessed. Most importantly, the approach is provisional not prescriptive, and does not prioritise one spatial interpretation over others
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Stable computational methods for additive binomial models with application to adjusted risk differences
30 November 2017University of SydneyDonoghoe, Mark W;Marschner, Ian C.Risk difference is an important measure of effect size in biostatistics, for both randomised and observational studies. The natural way to adjust risk differences for potential confounders is to use an additive binomial model, which is a binomial generalised linear model with an identity link function. However, implementations of the additive binomial model in commonly used statistical packages can fail to converge to the maximum likelihood estimate (MLE), necessitating the use of approximate methods involving misspecified or inflexible models. A novel computational method is proposed, which retains the additive binomial model but uses the multinomial–Poisson transformation to convert the problem into an equivalent additive Poisson fit. The method allows reliable computation of the MLE, as well as allowing for semi-parametric monotonic regression functions. The performance of the method is examined in simulations and it is used to analyse two datasets from clinical trials in acute myocardial infarction. Source code for implementing the method in R is provided as supplementary material (see Appendix A).
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Management of obesity and cardiometabolic risk - role of phentermine/extended release topiramate
09 February 2018University of SydneySweeting, AN;Tabet, E;Caterson, ID;Markovic, TPThe US Food and Drug Administration (FDA) recently approved lorcaserin and the combination of phentermine and extended release topiramate (phentermine/topiramate ER) for the treatment of obesity in conjunction with a lifestyle intervention, expanding the therapeutic options for long-term obesity pharmacotherapy, which was previously limited to orlistat. Combination phentermine/topiramate ER is associated with greater weight loss compared to its constituent monotherapy, with a more favorable adverse effect profile. Phentermine/topiramate ER also appears to have beneficial effects on cardiometabolic risk, although longer-term cardiovascular safety data are required. While there are no head-to-head studies among the currently available obesity pharmacotherapy agents, phentermine/topiramate ER appears to have a superior weight loss profile. This review will discuss the epidemiology, natural history, and cardiometabolic risk associated with obesity, provide an overview on current obesity pharmacotherapy, and summarize the recent clinical efficacy and safety data underpinning the FDA's approval of both phentermine/topiramate ER and lorcaserin as pharmacotherapy for a long-term obesity intervention.
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Consistent Estimation of Linear Regression Models Using Matched Data
05 April 2018University of SydneyHirukawa, Masayuki;Prokhorov, ArtemEconomists often use matched samples, especially when dealing with earnings data where a number of missing observations need to be imputed. In this paper, we demonstrate that the ordinary least squares estimator of the linear regression model using matched samples is inconsistent and has a nonstandard convergence rate to its probability limit. If only a few variables are used to impute the missing data, then it is possible to correct for the bias. We propose two semiparametric bias-corrected estimators and explore their asymptotic properties. The estimators have an indirect-inference interpretation and they attain the parametric convergence rate if the number of matching variables is no greater than three. Monte Carlo simulations confirm that the bias correction works very well in such cases.
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Development and testing of a database of NIH research funding of AAPM members: A report from the AAPM Working Group for the Development of a Research Database (WGDRD).
18 May 2018University of SydneyWhelan, B;Moros, EG;Fahrig, R;Deye, J;Yi, T;Woodward, N;Keall, P;Siewerdsen, JHPURPOSE: To produce and maintain a database of National Institutes of Health (NIH) funding of the American Association of Physicists in Medicine (AAPM) members, to perform a top-level analysis of these data, and to make these data (hereafter referred to as the AAPM research database) available for the use of the AAPM and its members. METHODS: NIH-funded research dating back to 1985 is available for public download through the NIH exporter website, and AAPM membership information dating back to 2002 was supplied by the AAPM. To link these two sources of data, a data mining algorithm was developed in Matlab. The false-positive rate was manually estimated based on a random sample of 100 records, and the false-negative rate was assessed by comparing against 99 member-supplied PI_ID numbers. The AAPM research database was queried to produce an analysis of trends and demographics in research funding dating from 2002 to 2015. RESULTS: A total of 566 PI_ID numbers were matched to AAPM members. False-positive and -negative rates were respectively 4% (95% CI: 1-10%, N = 100) and 10% (95% CI: 5-18%, N = 99). Based on analysis of the AAPM research database, in 2015 the NIH awarded $USD 110M to members of the AAPM. The four NIH institutes which historically awarded the most funding to AAPM members were the National Cancer Institute, National Institute of Biomedical Imaging and Bioengineering, National Heart Lung and Blood Institute, and National Institute of Neurological Disorders and Stroke. In 2015, over 85% of the total NIH research funding awarded to AAPM members was via these institutes, representing 1.1% of their combined budget. In the same year, 2.0% of AAPM members received NIH funding for a total of $116M, which is lower than the historic mean of $120M (in 2015 USD). CONCLUSIONS: A database of NIH-funded research awarded to AAPM members has been developed and tested using a data mining approach, and a top-level analysis of funding trends has been performed. Current funding of AAPM members is lower than the historic mean. The database will be maintained by members of the Working group for the development of a research database (WGDRD) on an annual basis, and is available to the AAPM, its committees, working groups, and members for download through the AAPM electronic content website. A wide range of questions regarding financial and demographic funding trends can be addressed by these data. This report has been approved for publication by the AAPM Science Council.
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Caution needed in introduction of provisional approvals for medicines
28 August 2018University of SydneyPace, J;Ghinea, N;Kerridge, I;Lipworth, WThe Australian government recently released its response to the Review of Medicines and Medical Devices Regulation, accepting most recommendations. One recommendation involves the introduction of provisional approvals for perceived lifesaving and innovative new treatments, allowing these to be approved on the basis of a more limited data dossier on the condition that further safety and efficacy data (including real world evidence) is collected to determine whether full approval should be granted. However, experience with similar schemes overseas raises significant questions about the safety and efficacy of products made available via these pathways; these risks are compounded by factors such as the challenges associated with the collection and use of “real world” data and the difficulties of withdrawing products from the market once patients and clinicians become familiar with them. Although there are a number of good reasons to provide patients with earlier access to medicines on the basis of provisional evidence (including providing treatment options to patients with serious illnesses and hope to those in desperate situations) we must exercise caution in the introduction of accelerated approval pathways in order to protect both current and future patients from potentially harmful and futile treatments, and ensure that healthcare systems use their resources wisely.
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Pavement condition and crashes
13 September 2018University of SydneyYokoo, Toshihiro;Levinson, David;Marasteanu, MihaiChange in weather state (such as the freeze-thaw cycle) leads to distresses in pave- ment materials. It has been hypothesized that poor pavement quality reduces the ability of roads to drain and reduces the ability of vehicles to resist skidding, and is thus associated with more crashes. This paper combines GIS data on crashes with a separate GIS database to test the hypothesis. Poor road quality is associated with more property damage and injury crashes. The interaction of road quality and curves was surprising, indicating that good pavement quality on curves increased the fatal, injury, and property-damage crash rate.
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Opioid use and harms associated with a sustained-release tapentadol formulation: a postmarketing study protocol
17 October 2018University of SydneyPeacock, Amy;Larance, Briony;Farrell, Michael;Cairns, Rose;Buckley, Nicholas A.;Degenhardt, LouisaIntroduction It has been argued that tapentadol may pharmacologically have lower abuse potential than other pharmaceutical opioids currently available. However, there has been no comprehensive triangulation of data regarding use and harms associated with this formulation. A sustained-release formulation (SRF) of tapentadol (Palexia) was released in Australia in 2011 and listed for public subsidy in 2013. We summarise here the methods of a postmarketing study which will measure postintroduction: (1) population level availability, (2) extramedical use and diversion, (3) attractiveness for extramedical use and (4) associated harms, of tapentadol compared against other pharmaceutical opioids. Methods and analysis We evaluated key sources on pharmaceutical use and harms in Australia. This review indicateddata from four sources that disaggregate pharmaceutical opioid formulations and capture tapentadol SRF could be triangulated. These data sources comprised: (1) national pharmaceutical opioid community sales data from 2011 to 2017, (2) national pharmaceutical opioid poisonings reported to Poison Information Centres (PICs) from 2011 to 2017, (3) number of vendors on online marketplaces listing pharmaceutical opioids for sale and (4) data on pharmaceutical opioid extramedical use, attractiveness and harms from interviews with people who regularly inject drugs in Australia. Ethics and dissemination Ethics approval is not required for use of pharmaceutical sales data. Ethics approval has been obtained for use of national pharmaceutical opioid poisonings reported to PICs (LNR/16/SCHN/44) and for use of online marketplace data and interview data from people who inject drugs (HC12086). Key findings will be published mid-2018 in a peer-reviewed academic journal, and presented at various conferences and professional meetings.
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The use of real world data for the research, development and evaluation of oncology precision medicines
07 November 2018University of SydneyLewis, J;Lipworth, W;Kerridge, IAlthough randomized controlled trials remain the scientific ideal for determining the efficacy and safety of new treatments, they are sometimes insufficient to address the evidentiary requirements of regulators and payers. This is particularly the case when it comes to precision medicines because trials are often small, deliver incomplete insights into outcomes of most interest to policymakers (e.g. overall survival) and may fail to address other complex diagnostic and treatment related questions. Additional methods—both experimental and observational—are increasingly being used to fill critical evidentiary gaps. A number of modified early and late phase trial designs have been proposed to better support earlier biomarker validation, patient identification and selection for regulatory studies but there is still a need for confirmatory evidence from real world data sources. These data are usually provided through observational, post approval Phase 3b and 4 studies, which rely heavily on registries and other electronic data sets—most notably obtained data from electronic health records (EHRs). It is, therefore, crucial to understand what ethical, practical and scientific challenges are raised by the use of EHRs to generate evidence about precision medicines.
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Constructing Authority in Disaster Relief Coordination
26 November 2018University of SydneyKoschmann, Matthew;Kopczynski, Jared;Opdyke, Aaron;Javernick-Will, AmyThe purpose of our study is to explore the social construction of authority in disaster relief coordination. We emphasize the ways in which stakeholders draw upon various discursive resources in order to establish or preserve their authority to act within a certain problem domain. We review literature on authority, coordination, communication, and collaborative work to provide a theoretical framework that informs our empirical examples. Next we present a case study of disaster relief coordination in the Philippines following Typhoon Yolanda (known internationally as Haiyan). Our case focuses on home reconstruction in the Cebu province of the Central Visayas region of the Philippines, one of the areas hardest hit by the storm where most of the homes were destroyed or severely damaged. This case demonstrates organizations do not have authority within this problem domain, but instead construct authority through practice and sensemaking in order to accomplish a variety of individual and collective goals; authority is in a constant state of negotiation as various organizations coordinate with each other (or not) to provide effective disaster relief. We conclude with a discussion about the contributions and implications of our research.
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Assessment of amyloid β in pathologically confirmed frontotemporal dementia syndromes
12 December 2018University of SydneyTan, RH;Kril, JJ;Yang, Y;Tom, N;Hodges, JR;Villemagne, VL;Rowe, CC;Leyton, CE;Kwok, JBJ;Ittner, LM;Halliday, GMThe diagnostic utility of in vivo amyloid β (Aβ) imaging to aid in the clinical distinction between frontotemporal dementia (FTD) and Alzheimer's disease remains unclear without data on the prevalence and severity of Aβ in pathologically confirmed FTD syndromes.
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Electrophysiological Measurements of Peripheral Vestibular Function-A Review of Electrovestibulography.
10 January 2019University of SydneyBrown, Daniel;Pastras, Christopher;Curthoys, IanElectrocochleography (EcochG), incorporating the Cochlear Microphonic (CM), the Summating Potential (SP), and the cochlear Compound Action Potential (CAP), has been used to study cochlear function in humans and experimental animals since the 1930s, providing a simple objective tool to assess both hair cell (HC) and nerve sensitivity. The vestibular equivalent of ECochG, termed here Electrovestibulography (EVestG), incorporates responses of the vestibular HCs and nerve. Few research groups have utilized EVestG to study vestibular function. Arguably, this is because stimulating the cochlea in isolation with sound is a trivial matter, whereas stimulating the vestibular system in isolation requires significantly more technical effort. That is, the vestibular system is sensitive to both high-level sound and bone-conducted vibrations, but so is the cochlea, and gross electrical responses of the inner ear to such stimuli can be difficult to interpret. Fortunately, several simple techniques can be employed to isolate vestibular electrical responses. Here, we review the literature underpinning gross vestibular nerve and HC responses, and we discuss the nomenclature used in this field. We also discuss techniques for recording EVestG in experimental animals and humans and highlight how EVestG is furthering our understanding of the vestibular system.
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Mixed-mode fracture and load misalignment on the assessment of FRP-concrete bond connections
21 January 2019University of SydneyNeto, P.;Alfaiate, J.;Dias-da-Costa, D.;Vinagre, J.Considerable dispersion is usually found in experimental data concerning the material properties of FRP-concrete bond connections. In pure shear models, the direction of FRP loading is assumed to be parallel to the axis of the concrete specimen. However, in practice, it is very difficult to prevent load misalignment. This fact can have important consequences on the derivation of material properties from experimental data. This is why a parametric study is herein undertaken to thoroughly identify the role of the load misalignment in the behaviour of the connection. It is concluded that the load capacity of the connection significantly decreases in the case of a misaligned load pointing outwards the reinforced surface. It is also found that this effect is less relevant for thick laminates when compared to thin FRP sheets.
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Enhancing use of emergency contraceptive pills: A systematic review of women’s attitudes, beliefs, knowledge and experiences in Australia
28 March 2019University of SydneyMooney-Somers, Julie;Amber, Lau;Bateson, Deborah;Richters, Juliet;Stewart, Mary;Black, Kirsten;Nothnagle, MelissaOver a decade after emergency contraceptive pills (ECPs) became available without a prescription, the rate of unintended pregnancies remains high in many settings. Understanding women’s experiences and perceptions of ECPs may provide insights into this underutilisation. We systematically searched databases to identify qualitative and quantitative primary studies about women’s beliefs, knowledge and experiences of ECPs in Australia. Findings demonstrate persistent misunderstandings around access, how ECPs work, and a moral discourse around acceptable versus unacceptable use. Addressing knowledge and the stigma around ECPs use is fundamental to increasing the use of this medically safe and effective strategy.
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Game on: Comparison of demographic profiles, consumption behaviours, and gambling site selection criteria of esports and sports bettors
10 April 2019University of SydneyGainsbury, Sally M.;Abarbanel, Brett;Blaszczynski, AlexThe esports betting market remains predominantly unregulated, although regulated sites have begun offering options to wager on these types of events. Previously, esports has been considered a niche market sector with participants differing from traditional sports and race bettors. However, as esports increasingly becomes absorbed into mainstream markets, it is important to understand the comparative similarities and differences in characteristics and behaviours between esport and traditional sports bettors. In particular, with regulators increasingly attempting to reduce use of offshore gambling sites, it is important to determine the extent to which those who bet on esports are more likely to access and engage in unregulated sites and activities. This paper classified and compared the characteristics of 501 Australians reporting participation in both sports and esports (n=160), or only in sports (n=341) bets online in the past month. Measures assessed use of online onshore and offshore sites, factors used to select gambling sites, and perceived advantages/disadvantages of using onshore compared to offshore sites. Findings suggested that the two groups were distinct in several ways; esports bettors were younger, more highly educated, had higher incomes and were represented by a greater proportion of females and individuals from Asian ethnic backgrounds. This group additionally reported starting gambling more recently and frequently overall, and expressed a preference to gamble on illegal offshore sites as opposed to domestically-licensed sites. Sports bettors were more likely to select domestic sites seeking more reliable and safe experiences, in contrast to esports bettors, who were motivated by the gambling experience, regardless of where a site was regulated. Results suggested that sports bettors perceived greater disadvantages of using offshore sites, and that this acted to deter access. In contrast, esports bettors sought a specific experience and were willing to use offshore sites. It is concluded that domestic operators need to provide a competitive online gambling environment and meet customer demands if online gamblers are to be deterred from using offshore sites.
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Multimodal neuroimaging computing: a review of the applications in neuropsychiatric disorders
11 June 2019University of SydneyLiu, Sidong;Cai, Weidong;Liu, Siqi;Zhang, Fan;Fulham, Michael;Feng, Dagan;Pujol, Sonia;Kikinis, RonMultimodal neuroimaging is increasingly used in neuroscience research, as it overcomes the limitations of individual modalities. One of the most important applications of multimodal neuroimaging is the provision of vital diagnostic data for neuropsychiatric disorders. Multimodal neuroimaging computing enables the visualization and quantitative analysis of the alterations in brain structure and function, and has reshaped how neuroscience research is carried out. Research in this area is growing exponentially, and so it is an appropriate time to review the current and future development of this emerging area. Hence, in this paper, we review the recent advances in multimodal neuroimaging (MRI, PET) and electrophysiological (EEG, MEG) technologies, and their applications to the neuropsychiatric disorders. We also outline some future directions for multimodal neuroimaging where researchers will design more advanced methods and models for neuropsychiatric research.
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Multimodal neuroimaging computing: the workflows, methods, and platforms
11 June 2019University of SydneyLiu, Sidong;Cai, Weidong;Liu, Siqi;Zhang, Fan;Fulham, Michael;Feng, Dagan;Pujol, Sonia;Kikinis, RonThe last two decades have witnessed the explosive growth in the development and use of noninvasive neuroimaging technologies that advance the research on human brain under normal and pathological conditions. Multimodal neuroimaging has become a major driver of current neuroimaging research due to the recognition of the clinical benefits of multimodal data, and the better access to hybrid devices. Multimodal neuroimaging computing is very challenging, and requires sophisticated computing to address the variations in spatiotemporal resolution and merge the biophysical/biochemical information. We review the current workflows and methods for multimodal neuroimaging computing, and also demonstrate how to conduct research using the established neuroimaging computing packages and platforms.
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A Unified Collaborative Multi-kernel Fuzzy Clustering for Multiview Data
13 June 2019University of SydneyZeng, Shan;Wang, Xiuying;Cui, Hui;Zheng, Chaojie;Feng, DaganClustering is increasingly important for multiview data analytics and current algorithms are either based on the collaborative learning of local partitions or directly derived global clustering from multikernel learning. In this paper, we innovate a clustering model that unifies the local partitions and global clustering in a collaborative learning framework. We first construct a common multikernel space from a set of basis kernels to better reflect clustering information of each individual view. Then, considering that joint local partitions would conform to the global clustering, we fuse the local partitions and global clustering guidance as a single objective function in accordance with fuzzy clustering form. The collaborative learning strategy enables the mutual and interactive clustering from local partitions and global clustering. The validation was performed over two synthetic and four public databases and the clustering accuracy was measured by normalized mutual information and rand index. The experimental results demonstrated that the proposed algorithm outperformed the related state-of-the-art algorithms in comparison, which included multitask, multikernel, and multiview clustering approaches.
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How to find the right postdoctoral position for you
01 July 2019University of SydneyTran, Dominic MD;Veldre, AaronThe increasingly competitive academic job market has forced PhD graduates in psychology, neuroscience, and related fields to maximize their research output and secure grant funding during the early postdoctoral period of their careers. In the present article, based on a Q&A session presented at a research retreat (Brain and Behaviour Lab, University of Sydney) in February 2018, we draw on our firsthand experiences of navigating the transition from graduate student to postdoc. We offer practical advice to students who may be nearing the end of their PhDs and planning their first steps toward an academic career. Although the postdoc experience is varied, it is important for early-career researchers to make optimal choices to increase their chances of securing a continuing academic position. Ultimately, the goal of a postdoctoral position should be to develop all the facets of an academic career, but with a strong focus on the quantity and quality of research outputs.
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Salt intake reduction efforts: advances and challenges
20 November 2019University of SydneyIsma'eel, H;Schoenhagen, P;Webster, JThe articles in this special issue of Cardiovascular Diagnosis and Therapy describe the efforts to reduce salt intake in different parts of the world, including South America, Africa, the Middle East, the Far East (China and Mongolia) and Australia, in addition to an overview of the work of the World Hypertension League in this domain. Sharing experiences from diverse regions and countries, these data will contribute to better understanding the challenges and opportunities encountered by the groups working in the field.
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Monitoring the health‐related labelling of foods and non‐alcoholic beverages in retail settings
05 December 2019University of SydneyRayner, M;Wood, A;Lawrence, M;Mhurchu, CN;Albert, J;Barquera, S;Friel, S;Hawkes, C;Kelly, B;Kumanyika, S;L'Abbé, M;Lee, A;Lobstein, T;Ma, J;Macmullan, J;Mohan, S;Monteiro, C;Neal, B;Sacks, G;Sanders, D;Snowdon, W;Swinburn, B;Vandevijvere, S;Walker, C;INFORMASFood labelling on food packaging has the potential to have both positive and negative effects on diets. Monitoring different aspects of food labelling would help to identify priority policy options to help people make healthier food choices. A taxonomy of the elements of health‐related food labelling is proposed. A systematic review of studies that assessed the nature and extent of health‐related food labelling has been conducted to identify approaches to monitoring food labelling. A step‐wise approach has been developed for independently assessing the nature and extent of health‐related food labelling in different countries and over time. Procedures for sampling the food supply, and collecting and analysing data are proposed, as well as quantifiable measurement indicators and benchmarks for health‐related food labelling.
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The Application of Unsupervised Clustering Methods to Alzheimer’s Disease
13 January 2020University of SydneyAlashwal, Hany;El Halaby, Mohamed;Crouse, Jacob;Abdalla, Areeg;Moustafa, AhmedClustering is a powerful machine learning tool for detecting structures in datasets. In the medical field, clustering has been proven to be a powerful tool for discovering patterns and structure in labeled and unlabeled datasets. Unlike supervised methods, clustering is an unsupervised method that works on datasets in which there is no outcome (target) variable nor is anything known about the relationship between the observations, that is, unlabeled data. In this paper, we focus on studying and reviewing clustering methods that have been applied to datasets of neurological diseases, especially Alzheimer’s disease (AD). The aim is to provide insights into which clustering technique is more suitable for partitioning patients of AD based on their similarity. This is important as clustering algorithms can find patterns across patients that are difficult for medical practitioners to find. We further discuss the implications of the use of clustering algorithms in the treatment of AD. We found that clustering analysis can point to several features that underlie the conversion from early-stage AD to advanced AD. Furthermore, future work can apply semi-clustering algorithms on AD datasets, which will enhance clusters by including additional information.
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A Web-based Multidisciplinary Team Meeting Visualisation System
16 January 2020University of SydneyJung, Hoijoon;Jung, Younhyun;Feng, Dagan;Fulham, Michael;Kim, JinmanPurpose Multidisciplinary team meetings (MDTs) are the standard of care for safe, effective patient management in modern hospital-based clinical practice. Medical imaging data are often the central discussion points in many MDTs and these data are typically visualised, by all participants, on a common large display. We propose a Web-based MDT visualisation system (WMDT-VS) to allow individual participants to view the data on their own personal computing devices with the potential to customise the imaging data, i.e., different view of the data to that of the common display, for their particular clinical perspective. Methods We developed the WMDT-VS by leveraging the state-of-the-art Web technologies to support four MDT visualisation features: (i) 2D and 3D visualisations for multiple imaging modality data; (ii) a variety of personal computing devices, e.g. smartphone, tablets, laptops and PCs, to access and navigate medical images individually and share the visualisations; (iii) customised participant visualisations and, (iv) the addition of extra local image data for visualisation and discussion. Results We outlined these MDT visualisation features on two simulated MDT settings using different imaging data and usage scenarios. We measured compatibility and performances of various personal, consumer-level, computing devices. Conclusions Our WMDT-VS provides a more comprehensive visualisation experience for MDT participants.
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Social Information Filtering Based Electricity Retail Plan Recommender System for Smart Grid End Users
30 January 2020University of SydneyLuo, Fengji;Ranzi, Gianluca;Wang, Xibin;Dong, Zhao YangRapid growth of data in smart grids provides great potentials for the utility to discover knowledge of demand side and design proper Demand Side Management (DSM) schemes to optimize the grid operation. The overloaded data also impose challenges on the data analytics and decision making. This paper introduces the service computing technique into the smart grid, and propose a personalized electricity retail plan recommender system for residential users. The proposed personalized recommender sys-tem (PRS) is based on the collaborative filtering (CF) technique. The energy consumption data of users are firstly collected from the smart meter, and then key energy consumption features of the users are extracted and stored into a user knowledge database (UKD), together with the information of their chosen electricity retail plans. For a target user, the recommender system analyzes his/her energy consumption pattern, find users having similar energy consumption patterns with him/her from the UKD, and then recommend most suitable pricing plan to the target user. Experiments are conducted based on actual smart meter data and retail plan data to verify the effectiveness of the proposed PRS.
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A Combinatorial Bayesian and Dirichlet Model for Prostate MR Image Segmentation Using Probabilistic Image Features
10 February 2020University of SydneyLi, Ang;Li, Changyang;Wang, Xiuying;Eberl, Stefan;Feng, Dagan;Fulham, MichaelBlurred boundaries and heterogeneous intensities make accurate prostate MR image segmentation problematic. To improve prostate MR image segmentation we suggest an approach that includes: (a) an image patch division method to partition the prostate into homogeneous segments for feature extraction; (b) an image feature formulation and classification method, using the relevance vector machine, to provide probabilistic prior knowledge for graph energy construction; (c) a graph energy formulation scheme with Bayesian priors and Dirichlet graph energy and (d) a non-iterative graph energy minimization scheme, based on matrix differentiation, to perform the probabilistic pixel membership optimization. The segmentation output was obtained by assigning pixels with foreground and background labels based on derived membership probabilities. We evaluated our approach on the PROMISE-12 dataset with 50 prostate MR image volumes. Our approach achieved a mean dice similarity coefficient (DSC) of 0.90 ± 0.02, which surpassed the five best prior-based methods in the PROMISE-12 segmentation challenge.
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Patients’ and healthcare professionals’ perceptions of self-management support interactions: Systematic review and qualitative synthesis
10 February 2020University of SydneyFranklin, M;Lewis, S;Willis, K;Rogers, A;Taylor-Burke, H;Smith, LAbstract Objective To review studies examining the experience of self-management support in patient–provider interactions and the shaping of goals through interactions. Methods We undertook a systematic review and thematic synthesis of the qualitative literature. We searched six databases (2004–2015) for published studies on the provision of self-management support in one-to-one, face-to-face, patient–provider interactions for obesity, type 2 diabetes mellitus and chronic obstructive pulmonary disease, with 14 articles meeting inclusion criteria. Results Themes identified from studies were (1) dominance of a traditional model of care, encompassing the provision of generic information, exclusion of the psychosocial and temporal nature of interactions and (2) a context of individual responsibility and accountability, encompassing self-management as patients’ responsibility and adherence, accountability and the attribution of blame. Interactions were constrained by consultation times, patient self-blame and guilt, desire for autonomy and beliefs about what constitutes ‘effective’ self-management. Discussion Encounters were oriented towards a traditional model of care delivery and this limited opportunity for collaboration. These findings suggest that healthcare professionals remain in a position of authority, limiting opportunities for control to be shared with patients and shared understandings of social context to be developed.
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A systematic review and meta-analysis of placebo versus no treatment for insomnia symptoms
11 February 2020University of SydneyYeung, Valerie;Sharpe, Louise;Glozier, Nick;Hackett, Maree;Colagiuri, BenThis systematic review and meta-analysis aimed to determine the size of the placebo effect for insomnia symptoms when comparing placebo treatment with no treatment. PsycINFO, MEDLINE, and CINAHL databases were systematically searched for studies allocating participants with insomnia symptoms (diagnosed or self-reported) to receive a placebo that they were led to believe was an active treatment or to a no treatment control group. Thirteen independent studies (n = 566) met inclusion criteria. Meta-analysis indicated a reliable placebo effect whereby placebo treatment led to improved perceived sleep onset latency (SOL; Hedges g = 0.272), total sleep time (TST; Hedges g = 0.322), and global sleep quality (GSQ; Hedges' g = 0.581), when compared with no treatment. There was no effect on objective assessment of SOL, however only a few studies reported this outcome and there were insufficient sample sizes to meta-analyse other objective outcomes. Moderator analysis indicated that the placebo effect for perceived insomnia symptoms was quite consistent across different variables. The present findings provide strong evidence for placebo effects for perceived insomnia symptoms, but not on the only objective measurement with sufficient sample size to meta-analyse, namely objective SOL. This has important implications for the treatment of insomnia symptoms and the design and interpretation of clinical trials for insomnia symptoms.
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Learning universal multiview dictionary for human action recognition
19 March 2020University of SydneyYao, Tingting;Wang, Zhiyong;Xie, Zhao;Gao, Jun;Feng, DaganRecently, many sparse coding based approaches have been proposed for human action recognition. However, most of them focus on learning a discriminative dictionary without explicitly taking into account the common patterns shared among different action classes. In this paper, we propose a novel discriminative dictionary learning framework by formulating a universal dictionary which consists of a shared sub-dictionary and a set of class-specific sub-dictionaries. As a result, inter-class differences can be better characterized with sparse codes obtained from the class-specific dictionaries. In addition, group sparsity and locality constraints are utilized to preserve the relationship and structure among features. In order to leverage the benefits of multiple descriptors, a dictionary is learned for each view, and the corresponding sparse representations of those descriptors are fused in a low dimensional feature space together with temporal information. The experimental results on three challenging datasets demonstrate that our method is able to achieve better performance than a number of stateof- the-art ones.
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Sense of Coherence and Gambling: Exploring the Relationship Between Sense of Coherence, Gambling Behaviour and Gambling-Related Harm
14 April 2020University of SydneyLangham, Erika;Russell, Alex M. T.;Hing, Nerilee;Gainsbury, Sally M.Understanding why some people experience problems with gambling whilst others are able to restrict gambling to recreational levels is still largely unexplained. One potential explanation is through salutogenesis, which is a health promotion approach of understanding factors which move people towards health rather than disease. An important aspect of salutogenesis is sense of coherence. Individuals with stronger sense of coherence perceive their environment as comprehensible, manageable and meaningful. The present study examined the relationship of individuals’ sense of coherence on their gambling behaviour and experience of gambling related harm. This exploratory study utilised an archival dataset (n = 1236) from an online, cross sectional survey of people who had experienced negative consequences from gambling. In general, a stronger sense of coherence was related to lower problem gambling severity. When gambling behaviour was controlled for, sense of coherence was significantly related to the experience of individual gambling harms. A strong sense of coherence can be seen as a protective factor against problematic gambling behaviour, and subsequent gambling related harms. These findings support the value of both primary and tertiary prevention strategies that strengthen sense of coherence as a harm minimisation strategy. The present study demonstrates the potential value of, and provides clear direction for, considering sense of coherence in order to understand gambling-related issues.
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Unfair play? Video games as exploitative monetized services: An examination of game patents from a consumer protection perspective
15 April 2020University of SydneyKing, Daniel L.;Delfabbro, Paul H.;Gainsbury, Sally M.;Dreier, Michael;Greer, Nancy;Billieux, JoëlVideo games as a consumer product have changed significantly with the advent of in-game purchasing systems (e.g., microtransactions, ‘loot boxes’). This review examines consumer protections related to in-game purchasing by anticipating some of the potential design strategies that might contribute to higher risk consumer behavior. Attention was directed towards the analysis of patents for potential in-game purchasing systems, with 13 identified on Google Patents. The design features were analysed in relation to the consumer rights and guarantees described in the terms of use agreements of the patent assignees. The analysis revealed that some in-game purchasing systems could be characterized as unfair or exploitative. These systems describe tactics that capitalize on informational advantages (e.g., behavioral tracking) and data manipulation (e.g., price manipulation) to optimize offers to incentivize continuous spending, while offering limited or no guarantees or protections (e.g., refund entitlement), with the potential to exploit vulnerable players (e.g., adolescents, problematic gamers). These findings are critically discussed in relation to behavioral economics, addiction psychology, and the clinical conceptualization of gaming disorder. Appropriate policy and consumer protection measures, psychologically informed interventions, and ethical game design guidelines are needed in order to protect the interests and wellbeing of consumers.
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A Genomic Perspective on the Origin and Emergence of SARS-CoV-2
04 May 2020University of SydneyZhang, Y. Z.;Holmes, E. C.The ongoing pandemic of a new human coronavirus, SARS-CoV-2, has generated enormous global concern. We and others in China were involved in the initial genome sequencing of the virus. Herein, we describe what genomic data reveal about the emergence SARS-CoV-2 and discuss the gaps in our understanding of its origins.
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The journal quality perception gap
04 May 2020University of SydneyBryce, Cormac;Dowling, Michael;Lucey, BrianWe explore the drivers of researchers' perceptions around journal quality, and how these perceptions converge or diverge with national journal ranking systems. Prior to the release of the Academic Journal Guide (AJG) 2018 rankings list, we surveyed UK business school researchers, resulting in 19,597 individual journal rankings. We find a notable journal quality perception gap, with 39% of subjective rankings from the business and management community differing from the AJG 2018 rankings. We show that measures of personal connection to the AJG system have strong explanatory power. These factors include the usage of, and sentiment towards, the AJG list, as well as individual research success as measured by AJG rankings. Consistently, we find that high values for these factors narrow the quality perception gap, whereas low values widen it. We also find an increase in the quality perception gap for journals that a respondent has submitted to or reviewed for. Our research, thus, provides new insights into how researchers interact with journal ranking systems. We propose how researchers, business schools, and ranking bodies can incorporate these findings to improve stakeholders' consensus on research quality assessment.