The security and privacy of usage policies and provenance logs in an Information Accountability Framework

The potential benefits of shared eHealth records systems are promising for the future of improved healthcare. However, the uptake of such systems is hindered by concerns over the security and privacy of patient information. The use of Information Accountability and so called Accountable-eHealth (AeH) systems has been proposed to balance the privacy concerns of patients with the information needs of healthcare professionals. However, a number of challenges remain before AeH systems can become a reality. Among these is the need to protect the information stored in the usage policies and provenance logs used by AeH systems to define appropriate use of information and hold users accountable for their actions. In this paper, we discuss the privacy and security issues surrounding these accountability mechanisms, define valid access to the information they contain, discuss solutions to protect them, and verify and model an implementation of the access requirements as part of an Information Accountability Framework.

Use of online health information to manage children’s health care: A prospective study investigating parental decisions

Background The use of the internet to access information is rapidly increasing; however, the quality of health information provided on various online sites is questionable. We aimed to examine the underlying factors that guide parents' decisions to use online information to manage their child's health care, a behaviour which has not yet been explored systematically. Methods Parents (N=391) completed a questionnaire assessing the standard theory of planned behaviour (TPB) measures of attitude, subjective norm, perceived behavioural control (PBC), and intention as well as the underlying TPB belief-based items (i.e., behavioural, normative, and control beliefs) in addition to a measure of perceived risk and demographic variables. Two months later, consenting parents completed a follow-up telephone questionnaire which assessed the decisions they had made regarding their use of online information to manage their child's health care during the previous 2 months. Results We found support for the TPB constructs of attitude, subjective norm, and PBC as well as the additional construct of perceived risk in predicting parents' intentions to use online information to manage their child's health care, with further support found for intentions, but not PBC, in predicting parents' behaviour. The results of the TPB belief-based analyses also revealed important information about the critical beliefs that guide parents' decisions to engage in this child health management behaviour. Conclusions This theory-based investigation to understand parents' motivations and online information-seeking behaviour is key to developing recommendations and policies to guide more appropriate help-seeking actions among parents.

Open access spatial data and collaboration

On 19 June 2015, representatives from over 40 Australian research institutions gathered in Canberra to launch their Open Data Collections. The one day event, hosted by the Australian National Data Service (ANDS), showcased to government and a range of national stakeholders the rich variety of data collections that have been generated through the Major Open Data Collections (MODC) project. Colin Eustace attended the showcase for QUT Library and presented a poster that reflected the work that he and Jodie Vaughan generated through the project. QUT’s Blueprint 4, the University’s five-year institutional strategic plan, outlines the key priorities of developing a commitment to working in partnership with industry, as well as combining disciplinary strengths with interdisciplinary application. The Division of Technology, Information and Learning Support (TILS) has undertaken a number of Australian National Data Service (ANDS) funded projects since 2009 with the aim of developing improved research data management services within the University to support these strategic aims. By leveraging existing tools and systems developed during these projects, the Major Open Data Collection (MODC) project delivered support to multi-disciplinary collaborative research activities through partnership building between QUT researchers and Queensland government agencies, in order to add to and promote the discovery and reuse of a collection of spatially referenced datasets. The MODC project built upon existing Research Data Finder infrastructure (which uses VIVO open source software, developed by Cornell University) to develop a separate collection, Spatial Data Finder (https://researchdatafinder.qut.edu.au/spatial) as the interface to display the spatial data collection. During the course of the project, 62 dataset descriptions were added to Spatial Data Finder, 7 added to Research Data Finder and two added to Software Finder, another separate collection. The project team met with 116 individual researchers and attended 13 school and faculty meetings to promote the MODC project and raise awareness of the Library’s services and resources for research data management.

A summary of the 'Engineering Education for Sustainable Development:Toolkit of Information & Teaching Material'

This paper reflects on the critical need for an urgent transformation of higher education curriculum globally, to equip society with professionals who can address our 21st Century sustainable living challenges. Specifically it discusses a toolkit called the ‘Engineering Sustainable Solutions Program’, which is a freely available, rigorously reviewed and robust content resource for higher education institutions to access content on innovations and opportunities in the process of evolving the curriculum...

The race to patent the SARS virus: The TRIPS agreement and access to essential medicines

This article considers the race to sequence the Severe Acute Respiratory Syndrome virus ('the SARS virus') in light of the debate over patent law and access to essential medicines. Part II evaluates the claims of public research institutions in Canada, the United States, and Hong Kong, and commercial companies, to patent rights in respect of the SARS virus. It highlights the dilemma of ’defensive patenting' - the tension between securing private patent rights and facilitating public disclosure of information and research. Part III considers the race to patent the SARS virus in light of wider policy debates over gene patents. It examines the application of such patent criteria as novelty, inventive step, utility, and secret use. It contends that there is a need to reform the patent system to accommodate the global nature of scientific inquiry, the unique nature of genetics, and the pace of technological change. Part IV examines the role played by the World Trade Organization and the World Health Organization in dealing with patent law and access to essential medicines. The article contends that there is a need to ensure that the patent system is sufficiently flexible and adaptable to accommodate international research efforts on infectious diseases.

Information accountability and health big data analytics: A consent-based model

With the ever increasing amount of eHealth data available from various eHealth systems and sources, Health Big Data Analytics promises enticing benefits such as enabling the discovery of new treatment options and improved decision making. However, concerns over the privacy of information have hindered the aggregation of this information. To address these concerns, we propose the use of Information Accountability protocols to provide patients with the ability to decide how and when their data can be shared and aggregated for use in big data research. In this paper, we discuss the issues surrounding Health Big Data Analytics and propose a consent-based model to address privacy concerns to aid in achieving the promised benefits of Big Data in eHealth.

Managing and sharing health data through information accountability protocols

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. In order to balance these requirements, the use of an Information Accountability Framework devised for eHealth systems has been proposed. In this paper, we take a step closer to the adoption of the Information Accountability protocols and demonstrate their functionality through an implementation in FluxMED, a customisable EHR system.

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.

Medical Data Access Accountability in EHR Systems, A Practical Perspective

The world has experienced a large increase in the amount of available data. Therefore, it requires better and more specialized tools for data storage and retrieval and information privacy. Recently Electronic Health Record (EHR) Systems have emerged to fulfill this need in health systems. They play an important role in medicine by granting access to information that can be used in medical diagnosis. Traditional systems have a focus on the storage and retrieval of this information, usually leaving issues related to privacy in the background. Doctors and patients may have different objectives when using an EHR system: patients try to restrict sensible information in their medical records to avoid misuse information while doctors want to see as much information as possible to ensure a correct diagnosis. One solution to this dilemma is the Accountable e-Health model, an access protocol model based in the Information Accountability Protocol. In this model patients are warned when doctors access their restricted data. They also enable a non-restrictive access for authenticated doctors. In this work we use FluxMED, an EHR system, and augment it with aspects of the Information Accountability Protocol to address these issues. The Implementation of the Information Accountability Framework (IAF) in FluxMED provides ways for both patients and physicians to have their privacy and access needs achieved. Issues related to storage and data security are secured by FluxMED, which contains mechanisms to ensure security and data integrity. The effort required to develop a platform for the management of medical information is mitigated by the FluxMED's workflow-based architecture: the system is flexible enough to allow the type and amount of information being altered without the need to change in your source code.

'As many options as there are, there are just not enough for me': Contraceptive use and barriers to access among Australian women

OBJECTIVE A comprehensive life course perspective of women's experiences in obtaining and using contraception in Australia is lacking. This paper explores free-text comments about contraception provided by women born between 1973 and 1978 who participated in the Australian Longitudinal Study on Women's Health (ALSWH). METHODS The ALSWH is a national population-based cohort study involving over 40,000 women from three age groups, who are surveyed every three years. An initial search identified 1600 comments from 690 women across five surveys from 1996 (when they were aged 18-23 years) to 2009 (31-36 years). The analysis included 305 comments from 289 participants. Factors relating to experiences of barriers to access and optimal contraceptive use were identified and explored using thematic analysis. RESULTS Five themes recurred across the five surveys as women aged: (i) side effects affecting physical and mental health; (ii) lack of information about contraception; (iii) negative experiences with health services; (iv) contraceptive failure; and (v) difficulty with accessing contraception. CONCLUSION Side effects of hormonal contraception and concerns about contraceptive failure influence women's mental and physical health. Many barriers to effective contraception persist throughout women's reproductive lives. Further research is needed into reducing barriers and minimising negative experiences, to ensure optimal contraceptive access for Australian women.

An information accountability perspective to eHealth security and privacy

Rigid security boundaries hinder the proliferation of eHealth. Through active audit logs, accountable-eHealth systems alleviate privacy concerns and enhance information availability.

Functional activation during the Rapid Visual Information Processing task in a middle aged cohort: An fMRI study

The Rapid Visual Information Processing (RVIP) task, a serial discrimination task where task performance believed to reflect sustained attention capabilities, is widely used in behavioural research and increasingly in neuroimaging studies. To date, functional neuroimaging research into the RVIP has been undertaken using block analyses, reflecting the sustained processing involved in the task, but not necessarily the transient processes associated with individual trial performance. Furthermore, this research has been limited to young cohorts. This study assessed the behavioural and functional magnetic resonance imaging (fMRI) outcomes of the RVIP task using both block and event-related analyses in a healthy middle aged cohort (mean age = 53.56 years, n = 16). The results show that the version of the RVIP used here is sensitive to changes in attentional demand processes with participants achieving a 43% accuracy hit rate in the experimental task compared with 96% accuracy in the control task. As shown by previous research, the block analysis revealed an increase in activation in a network of frontal, parietal, occipital and cerebellar regions. The event related analysis showed a similar network of activation, seemingly omitting regions involved in the processing of the task (as shown in the block analysis), such as occipital areas and the thalamus, providing an indication of a network of regions involved in correct trial performance. Frontal (superior and inferior frontal gryi), parietal (precuenus, inferior parietal lobe) and cerebellar regions were shown to be active in both the block and event-related analyses, suggesting their importance in sustained attention/vigilance. These networks and the differences between them are discussed in detail, as well as implications for future research in middle aged cohorts.

Understanding the information dynamics of medication administration in residential aged care facilities (RACFs): A prerequisite for design of effective ICT systems

Medication information is a critical part of the information required to ensure residents' safety in the highly collaborative care context of RACFs. Studies report poor medication information as a barrier to improve medication management in RACFs. Research exploring medication work practices in aged care settings remains limited. This study aimed to identify contextual and work practice factors contributing to breakdowns in medication information exchange in RACFs in relation to the medication administration process. We employed non-participant observations and semi-structured interviews to explore information practices in three Australian RACFs. Findings identified inefficiencies due to lack of information timeliness, manual stock management, multiple data transcriptions, inadequate design of essential documents such as administration sheets and a reliance on manual auditing procedures. Technological solutions such as electronic medication administration records offer opportunities to overcome some of the identified problems. However these interventions need to be designed to align with the collaborative team based processes they intend to support.

The open access advantage for researchers: Reflections on experience and challenges

This paper focuses on the advantages of Open Access, (OA) particularly from the point of view of individual researchers, research centres and disciplines, and institutions. The advantage described by the phrase “OA advantage”, is multifaceted. The experience of Queensland University of Technology in Australia in pioneering OA as preferred practice in an institution with a growing research profile and energy, has seen evidence of the OA advantage develop in the experience of our researchers. The University has witnessed the development of practical evidence about improved recognition and impact, and this has occurred in the context of sector wide activity and policy where fresh approaches and leadership will result in even greater rewards for researchers whose outputs are “in the open”.

A comparative structural bioinformatics analysis of the insulin receptor family ectodomain based on phylogenetic information

The insulin receptor (IR), the insulin-like growth factor 1 receptor (IGF1R) and the insulin receptor-related receptor (IRR) are covalently-linked homodimers made up of several structural domains. The molecular mechanism of ligand binding to the ectodomain of these receptors and the resulting activation of their tyrosine kinase domain is still not well understood. We have carried out an amino acid residue conservation analysis in order to reconstruct the phylogeny of the IR Family. We have confirmed the location of ligand binding site 1 of the IGF1R and IR. Importantly, we have also predicted the likely location of the insulin binding site 2 on the surface of the fibronectin type III domains of the IR. An evolutionary conserved surface on the second leucine-rich domain that may interact with the ligand could not be detected. We suggest a possible mechanical trigger of the activation of the IR that involves a slight ‘twist’ rotation of the last two fibronectin type III domains in order to face the likely location of insulin. Finally, a strong selective pressure was found amongst the IRR orthologous sequences, suggesting that this orphan receptor has a yet unknown physiological role which may be conserved from amphibians to mammals.