Delegation of access in an Information Accountability Framework for eHealth

Shared eHealth records systems offer promising benefits for improving healthcare through high availability of information and improved decision making; however, their uptake has been hindered by concerns over the privacy of patient information. To address these privacy concerns while balancing the requirements of healthcare professionals to have access to the information they need to provide appropriate care, the use of an Information Accountability Framework (IAF) has been proposed. For the IAF and so called Accountable-eHealth systems to become a reality, the framework must provide for a diverse range of users and use cases. The initial IAF model did not provide for more diverse use cases including the need for certain users to delegate access to another user in the system to act on their behalf while maintaining accountability. In this paper, we define the requirements for delegation of access in the IAF, how such access policies would be represented in the Framework, and implement and validate an expanded IAF model.

A biomarker panel to discriminate between systemic inflammatory response syndrome and sepsis and sepsis severity

Introduction: In this study, we report on initial efforts to discover putative biomarkers for differential diagnosis of a systemic inflammatory response syndrome (SIRS) versus sepsis; and different stages of sepsis. In addition, we also investigated whether there are proteins that can discriminate between patients who survived sepsis from those who did not. Materials and Methods: Our study group consisted of 16 patients, of which 6 died and 10 survived. We daily measured 28 plasma proteins, for the whole stay of the patients in the ICU. Results: We observed that metalloproteinases and sE-selectin play a role in the distinction between SIRS and sepsis, and that IL-1, IP-10, sTNF-R2 and sFas appear to be indicative for the progression from sepsis to septic shock. A combined measurement of MMP-3, -10, IL-1, IP-10, sIL-2R, sFas, sTNF-R1, sRAGE, GM-CSF, IL-1 and Eotaxin allows for a good separation of patients that survived from those that died (mortality prediction with a sensitivity of 79% and specificity of 86%). Correlation analysis suggests a novel interaction between IL-1a and IP-10. Conclusion: The marker panel is ready to be verified in a validation study with or without therapeutic intervention.

Dealing with the problem of cybercrime

Lack of a universally accepted and comprehensive taxonomy of cybercrime seriously impedes international efforts to accurately identify, report and monitor cybercrime trends. There is, not surprisingly, a corresponding disconnect internationally on the cybercrime legislation front, a much more serious problem and one which the International Telecommunication Union (ITU) says requires „the urgent attention of all nations‟. Yet, and despite the existence of the Council of Europe Convention on Cybercrime, a proposal for a global cybercrime treaty was rejected by the United Nations (UN) as recently as April 2010. This paper presents a refined and comprehensive taxonomy of cybercrime and demonstrates its utility for widespread use. It analyses how the USA, the UK, Australia and the UAE align with the CoE Convention and finds that more needs to be done to achieve conformance. We conclude with an analysis of the approaches used in Australia, in Queensland, and in the UAE, in Abu Dhabi, to fight cybercrime and identify a number of shared problems.

Towards a relational theory of copyright law

This research provides a systematic and theoretical analysis of the digital challenges to the established exclusive regime of the economic rights enjoyed by authors (and related rightholders) under the law of copyright. Accordingly, this research has developed a relational theory of authorship and a relational approach to copyright, contending that the regulatory emphasis of copyright law should focus on the facilitation of the dynamic relations between the culture, the creators, the future creators, the users and the public, rather than the allocation of resources in a static world. In this networked digital world, the creative works and contents have become increasingly vital for people to engage in creativity and cultural innovation, and for the evolution of the economy. Hence, it is argued that today copyright owners, as content holders, have certain obligations to make their works accessible and available to the public under fair conditions. This research sets forward a number of recommendations for the reform of the current copyright system.

The role of legislative, executive and judicial mechanisms in ensuring a fair and effective asylum process

A good faith reading of core international protection obligations requires that states employ appropriate legislative, administrative and judicial mechanisms to ensure the enjoyment of a fair and effective asylum process. Restrictive asylum policies instead seek to ‘denationalize’ the asylum process by eroding access to national statutory, judicial and executive safeguards that ensure a full and fair hearing of an asylum claim. From a broader perspective, the argument in this thesis recognizes hat international human rights depend on domestic institutions for their effective implementation, and that a rights-based international legal order requires that power is limited, whether that power is expressed as an instance of the sovereign right of states in international law or as the authority of governments under domestic constitutions.

Right to the city, desire for the suburb?

The 2000s have been a lively decade for cities. The Worldwatch Institute estimated that 2007 was the first year in human history that more people worldwide lived in cities than the countryside. Globalisation and new digital media technologies have generated the seemingly paradoxical outcome that spatial location came to be more rather than less important, as combinations of firms, industries, cultural activities and creative talents have increasingly clustered around a select node of what have been termed “creative cities,” that are in turn highly networked into global circuits of economic capital, political power and entertainment media. Intellectually, the period has seen what the UCLA geographer Ed Soja refers to as the spatial turn in social theory, where “whatever your interests may be, they can be significantly advanced by adopting a critical spatial perspective”. This is related to the dynamic properties of socially constructed space itself, or what Soja terms “the powerful forces that arise from socially produced spaces such as urban agglomerations and cohesive regional economies,” with the result that “what can be called the stimulus of socio-spatial agglomeration is today being assertively described as the primary cause of economic development, technological innovation, and cultural creativity”

Refusal of medical treatment : a child's prerogative?

Society has a need for children to be able to make health care decisions. Homeless children need access to health care. Parents may not be accessible or competent to consent to their child’s health care. The familial relationship may have broken down. Children may not want their parents to know about drug, alcohol or pregnancy related issues. There is legal and academic support for the right of children to make autonomous decisions with respect to their health care. However what these decisions cover and who can make them is not clear. Whether or not a minor has capacity and is therefore competent to consent to medical treatment is a question of law. Some states of Australia have enacted legislation, while others rely on the common law to determine this issue. At common law a minor is capable of giving consent to medical treatment when he or she achieves a sufficient understanding and intelligence to be able to understand fully what is proposed. Known as ‘Gillick competence’ this is a well known principle of law. The question posed by this paper is whether the decision of a ‘Gillick competent’ child can and should be overridden by the court?

Submission to House Standing Committee on Infrastructure and Communications : inquiry into the role and potential of the National Broadband Network

Just as telecommunications has played a key role in the global economy,1 high-speed broadband will have a significant role to play in the future of the digital economy. In particular high-speed broadband will have a role to play in the delivery of applications and services necessary for acquiring, and maintaining into the future Australia and Australians’ appropriate education level; community; health services, information provision and support; government services and engagement and participation by the public in the political process.

Intraurban rail access : Policy implications of five revealed perspectives from a Q-sorting exercise in three Australian cities

This project advances current understanding of intra-urban rail passengers and their travel experiences in order to help rail industry leaders tailor policy approaches to fit specific, relevant segments of their target population. Using a Q sorting technique and cluster analysis, our preliminary research identified five perspectives occurring in a small sample of rail passengers, who varied in their frequency and location of rail travel as well as certain socio-demographic characteristics. Revealed perspectives (named to capture the gist of their content) included: ‘Rail Travel is About the Destination, Not the Journey’; ‘Despite Challenges, Public Transport is Still the Best Option’; ‘Rail Travel is Fine’; ‘Rail Travel? So Far, So Good’; and ‘Bad Taste for Rail Travel’. This paper discusses each of the perspectives in detail, and considers them in terms of tailored policy implications. An overarching finding from this study is that improving railway travel ‘access’ requires attention to physical, psychological, financial, and social facets of accessibility. For example, designing waiting areas to be more socially functional and comfortable has the potential to increase ridership by addressing social forms of access, decreasing perceived wait times, and making time at the station feel like time well spent. Even at this preliminary stage, the Q sorting technique promises to provide a valuable, holistic albeit fine-grained analysis of passenger attitudes and experiences that will assist industry efforts to increase ridership.

What makes an LMS effective : a synthesis of current literature

There is a growing number of organizations and universities now utilising e-learning practices in their teaching and learning programs. These systems have allowed for knowledge sharing and provide opportunities for users to have access to learning materials regardless of time and place. However, while the uptake of these systems is quite high, there is little research into the effectiveness of such systems, particularly in higher education. This paper investigates the methods that are used to study the effectiveness of e-learning systems and the factors that are critical for the success of a learning management system (LMS). Five major success categories are identified in this study and explained in depth. These are the teacher, student, LMS design, learning materials and external support.

Urban transit quality of service : user perception and behaviour

Despite its potential multiple contributions to sustainable policy objectives, urban transit is generally not widely used by the public in terms of its market share compared to that of automobiles, particularly in affluent societies with low-density urban forms like Australia. Transit service providers need to attract more people to transit by improving transit quality of service. The key to cost-effective transit service improvements lies in accurate evaluation of policy proposals by taking into account their impacts on transit users. If transit providers knew what is more or less important to their customers, they could focus their efforts on optimising customer-oriented service. Policy interventions could also be specified to influence transit users’ travel decisions, with targets of customer satisfaction and broader community welfare. This significance motivates the research into the relationship between urban transit quality of service and its user perception as well as behaviour. This research focused on two dimensions of transit user’s travel behaviour: route choice and access arrival time choice. The study area chosen was a busy urban transit corridor linking Brisbane central business district (CBD) and the St. Lucia campus of The University of Queensland (UQ). This multi-system corridor provided a ‘natural experiment’ for transit users between the CBD and UQ, as they can choose between busway 109 (with grade-separate exclusive right-of-way), ordinary on-street bus 412, and linear fast ferry CityCat on the Brisbane River. The population of interest was set as the attendees to UQ, who travelled from the CBD or from a suburb via the CBD. Two waves of internet-based self-completion questionnaire surveys were conducted to collect data on sampled passengers’ perception of transit service quality and behaviour of using public transit in the study area. The first wave survey is to collect behaviour and attitude data on respondents’ daily transit usage and their direct rating of importance on factors of route-level transit quality of service. A series of statistical analyses is conducted to examine the relationships between transit users’ travel and personal characteristics and their transit usage characteristics. A factor-cluster segmentation procedure is applied to respodents’ importance ratings on service quality variables regarding transit route preference to explore users’ various perspectives to transit quality of service. Based on the perceptions of service quality collected from the second wave survey, a series of quality criteria of the transit routes under study was quantitatively measured, particularly, the travel time reliability in terms of schedule adherence. It was proved that mixed traffic conditions and peak-period effects can affect transit service reliability. Multinomial logit models of transit user’s route choice were estimated using route-level service quality perceptions collected in the second wave survey. Relative importance of service quality factors were derived from choice model’s significant parameter estimates, such as access and egress times, seat availability, and busway system. Interpretations of the parameter estimates were conducted, particularly the equivalent in-vehicle time of access and egress times, and busway in-vehicle time. Market segmentation by trip origin was applied to investigate the difference in magnitude between the parameter estimates of access and egress times. The significant costs of transfer in transit trips were highlighted. These importance ratios were applied back to quality perceptions collected as RP data to compare the satisfaction levels between the service attributes and to generate an action relevance matrix to prioritise attributes for quality improvement. An empirical study on the relationship between average passenger waiting time and transit service characteristics was performed using the service quality perceived. Passenger arrivals for services with long headways (over 15 minutes) were found to be obviously coordinated with scheduled departure times of transit vehicles in order to reduce waiting time. This drove further investigations and modelling innovations in passenger’ access arrival time choice and its relationships with transit service characteristics and average passenger waiting time. Specifically, original contributions were made in formulation of expected waiting time, analysis of the risk-aversion attitude to missing desired service run in the passengers’ access time arrivals’ choice, and extensions of the utility function specification for modelling passenger access arrival distribution, by using complicated expected utility forms and non-linear probability weighting to explicitly accommodate the risk of missing an intended service and passenger’s risk-aversion attitude. Discussions on this research’s contributions to knowledge, its limitations, and recommendations for future research are provided at the concluding section of this thesis.

Intraurban rail access : policy implications of five revealed perspectives from a Q-sorting exercise in three Australian cities

This project advances the current understanding of intraurban rail passengers and their travel experiences to help rail industry leaders tailor policy approaches to fit specific, relevant segments of their target population. Using a Q-sorting technique and cluster analysis, preliminary research identified five perspectives occurring in a small sample of rail passengers who varied in their frequency and location of rail travel as well as certain sociodemographic characteristics. Revealed perspectives (named to capture the gist of their content) included "Rail travel is about the destination, not the journey"; "Despite challenges, public transport is still the best option"; "Rail travel is fine"; "Rail travel? So far, so good"; and "Bad taste for rail travel." This paper discusses each of the perspectives in detail and considers them in relation to tailored policy implications. An overarching finding from this study is that improving railway travel access requires attention to physical, psychological, financial, and social facets of accessibility. For example, designing waiting areas to be more socially functional and comfortable has the potential to increase ridership by addressing social forms of access, decreasing perceived wait times, and making time at the station feel like time well spent. Even at this preliminary stage, the Q-sorting technique promises to provide a valuable, holistic, albeit fine-grained, analysis of passenger attitudes and experiences that will assist industry efforts in increasing ridership.

Better health outcomes for people with physical disabilities in China through audits of mobility related access : a research and implementation need

China has 85 million people with disabilities, 30% of whom have a physical disability(1). Up to 2006, overall disability rates increased by 0.5% per year, more for males and in rural areas, and rates of physical disability increased by 11.2% per year(2). With population ageing the proportion of people with disability will increase even faster. In May 2014 the 67th World Health Assembly adopted a resolution endorsing the WHO Global Disability Action Plan 2014–2021. One of its three objectives is “to remove barriers and improve access to health services and programmes”. Access to transport contributes to positive health outcomes both directly and indirectly (e.g. access to economic opportunities, which is associated with better health)(3). However, once people with physical disabilities leave their dwellings they are confronted with physical barriers to their mobility, ranging from the condition/provision of paths to the cost/availability of transport and access to buildings. In addition, their mobility restrictions increase their vulnerability as road users, exposing them to a higher risk of injury through road crashes. QUT's School of Public Health and Social Work (PHSW) and and Centre for Accident Research and Road Safety-Queensland (CARRS-Q) CARRS-Q have been collaborating on development of a combined disability audit and road safety access tool that can identify transport barriers and safety issues along the routes taken by people with disabilities, to enable prioritisation of actions to address these issues. There are also spin-off benefits for other road users from addressing the rising toll of disability through road crashes in China(4). The tool has undergone initial proof-of-concept testing in India and Viet Nam, and is currently being assessed in Cambodia and Laos. Given the rapid development of China, increases in rates of physical disability and the impacts of an ageing population, it is proposed to establish collaborative research through the Australia-China Centre for Public Health to (1) tailor the combined road safety audit and disability access tool for use in China; (2) evaluate its use on a sample of routes; (3) develop plans for changes to the routes in consultation with local authorities; (4) evaluate the effectiveness of implemented changes in terms of access and health. 1. Zheng, Q, et al, 2014. Health and Quality of Life Outcomes, 12:25. 2. Zheng, X, et al, 2011. Bull World Health Org, 89:788–797. 3. Götschi, T & Kahlmeier, S, 2011. Integrated Transport, Health, and Sustainability Assessment (INTHESA): Final Report. Institute of Social and Preventive Medicine, University of Zurich. 4. Lin, T, et al, 2013. J Public Health, 35:541–547.

The empire of cancer: Gene patents and cancer voices

In his book, The Emperor of All Maladies, Siddhartha Mukherjee writes a history of cancer — "It is a chronicle of an ancient disease — once a clandestine, 'whispered-about' illness — that has metamorphosed into a lethal shape-shifting entity imbued with such penetrating metaphorical, medical, scientific, and political potency that cancer is often described as the defining plague of our generation." Increasingly, an important theme in the history of cancer is the role of law, particularly in the field of intellectual property law. It is striking that a number of contemporary policy debates over intellectual property and public health have concerned cancer research, diagnosis, and treatment. In the area of access to essential medicines, there has been much debate over Novartis’ patent application in respect of Glivec, a treatment for leukaemia. India’s Supreme Court held that the Swiss company’s patent application violated a safeguard provision in India’s patent law designed to stop evergreening. In the field of tobacco control, the Australian Government introduced plain packaging for tobacco products in order to address the health burdens associated with the tobacco epidemic. This regime was successfully defended in the High Court of Australia. In the area of intellectual property and biotechnology, there have been significant disputes over the Utah biotechnology company Myriad Genetics and its patents in respect of genetic testing for BRCA1 and BRCA2, which are related to breast cancer and ovarian cancer. The Federal Court of Australia handed down a decision on the validity of Myriad Genetics’ patent in respect of genetic testing for BRCA1 in February 2013. The Supreme Court of the United States heard a challenge to the validity of Myriad Genetics’ patents in this area in April 2013, and handed down a judgment in July 2013. Such disputes have involved tensions between intellectual property rights, and public health. This article focuses upon one of these important test cases involving intellectual property, public health, and cancer research. In June 2010, Cancer Voices Australia and Yvonne D’Arcy brought an action in the Federal Court of Australia against the validity of a BRCA1 patent — held by Myriad Genetics Inc, the Centre de Recherche du Chul, the Cancer Institute of Japan and Genetic Technologies Limited. Yvonne D’Arcy — a Brisbane woman who has had treatment for breast cancer — maintained: "I believe that what they are doing is morally and ethically corrupt and that big companies should not control any parts of the human body." She observed: "For my daughter, I've had her have [sic] mammograms, etc, because of me but I would still like her to be able to have the test to see if the mutation gene is in there from me." The applicants made the following arguments: "Genes and the information represented by human gene sequences are products of nature universally present in each individual, and the information content of a human gene sequence is fixed. Genetic variations or mutations are products of nature. The isolation of the BRCA1 gene mutation from the human body constitutes no more than a medical or scientific discovery of a naturally occurring phenomenon and does not give rise to a patentable invention." The applicants also argued that "the alleged invention is not a patentable invention in that, so far as claimed in claims 1–3, it is not a manner of manufacture within the meaning of s 6 of the Statute of Monopolies". The applicants suggested that "the alleged invention is a mere discovery". Moreover, the applicants contended that "the alleged invention of each of claims 1-3 is not a patentable invention because they are claims for biological processes for the generation of human beings". The applicants, though, later dropped the argument that the patent claims related to biological processes for the generation of human beings. In February 2013, Nicholas J of the Federal Court of Australia considered the case brought by Cancer Voices Australia and Yvonne D’Arcy against Myriad Genetics. The judge presented the issues in the case, as follows: "The issue that arises in this case is of considerable importance. It relates to the patentability of genes, or gene sequences, and the practice of 'gene patenting'. Briefly stated, the issue to be decided is whether under the Patents Act 1990 (Cth) a valid patent may be granted for a claim that covers naturally occurring nucleic acid — either deoxyribonucleic acid (DNA) or ribonucleic acid (RNA) — that has been 'isolated'". In this context, the word "isolated" implies that naturally occurring nucleic acid found in the cells of the human body, whether it be DNA or RNA, has been removed from the cellular environment in which it naturally exists and separated from other cellular components also found there. The genes found in the human body are made of nucleic acid. The particular gene with which the patent in suit is concerned (BRCA1) is a human breast and ovarian cancer disposing gene. Various mutations that may be present in this gene have been linked to various forms of cancer including breast cancer and ovarian cancer.' The judge held in this particular case that Myriad Genetics’ patent claims were a "manner of manufacture" under s 6 of the Statute of Monopolies and s 18(1)(a) of the Patents Act 1990 (Cth). The matter is currently under appeal in the Full Court of the Federal Court of Australia. This article interprets the dispute over Myriad Genetics in light of the scholarly work of Nobel Laureate Professor Joseph Stiglitz on inequality. Such work has significant explanatory power in the context of intellectual property and biotechnology. First, Stiglitz has contended that "societal inequality was a result not just of the laws of economics, but also of how we shape the economy — through politics, including through almost every aspect of our legal system". Stiglitz is concerned that "our intellectual property regime … contributes needlessly to the gravest form of inequality." He maintains: "The right to life should not be contingent on the ability to pay." Second, Stiglitz worries that "some of the most iniquitous aspects of inequality creation within our economic system are a result of 'rent-seeking': profits, and inequality, generated by manipulating social or political conditions to get a larger share of the economic pie, rather than increasing the size of that pie". He observes that "the most iniquitous aspect of this wealth appropriation arises when the wealth that goes to the top comes at the expense of the bottom." Third, Stiglitz comments: "When the legal regime governing intellectual property rights is designed poorly, it facilitates rent-seeking" and "the result is that there is actually less innovation and more inequality." He is concerned that intellectual property regimes "create monopoly rents that impede access to health both create inequality and hamper growth more generally." Finally, Stiglitz has recommended: "Government-financed research, foundations, and the prize system … are alternatives, with major advantages, and without the inequality-increasing disadvantages of the current intellectual property rights system.’" This article provides a critical analysis of the Australian litigation and debate surrounding Myriad Genetics’ patents in respect of genetic testing for BRCA1. First, it considers the ruling of Nicholas J in the Federal Court of Australia that Myriad Genetics’ patent was a manner of manufacture as it related to an artificially created state of affairs, and not mere products of nature. Second, it examines the policy debate over gene patents in Australia, and its relevance to the litigation involving Myriad Genetics. Third, it examines comparative law, and contrasts the ruling by Nicholas J in the Federal Court of Australia with developments in the United States, Canada, and the European Union. Fourth, this piece considers the reaction to the decision of Nicholas at first instance in Australia. Fifth, the article assesses the prospects of an appeal to the Full Federal Court of Australia over the Myriad Genetics’ patents. Finally, this article observes that, whatever happens in respect of litigation against Myriad Genetics, there remains controversy over Genetic Technologies Limited. The Melbourne firm has been aggressively licensing and enforcing its related patents on non-coding DNA and genomic mapping.

The design and implementation of an Information Accountability Framework for eHealth systems

This tutorial primarily focuses on the implementation of Information Accountability (IA) protocols defined in an Information Accountability Framework (IAF) in eHealth systems. Concerns over the security and privacy of patient information are one of the biggest hindrances to sharing health information and the wide adoption of eHealth systems. At present, there are competing requirements between healthcare consumers' (i.e. patients) requirements and healthcare professionals' (HCP) requirements. While consumers want control over their information, healthcare professionals want access to as much information as required in order to make well-informed decisions and provide quality care. This conflict is evident in the review of Australia's PCEHR system and in recent studies of patient control of access to their eHealth information. In order to balance these requirements, the use of an Information Accountability Framework devised for eHealth systems has been proposed. Through the use of IA protocols, so-called Accountable-eHealth systems (AeH) create an eHealth environment where health information is available to the right person at the right time without rigid barriers whilst empowering the consumers with information control and transparency. In this half-day tutorial, we will discuss and describe the technical challenges surrounding the implementation of the IAF protocols into existing eHealth systems and demonstrate their use. The functionality of the protocols and AeH systems will be demonstrated, and an example of the implementation of the IAF protocols into an existing eHealth system will be presented and discussed.