Understanding the legal implications of data sharing, access and reuse in the Australian research landscape

Researchers are increasingly involved in data-intensive research projects that cut across geographic and disciplinary borders. Quality research now often involves virtual communities of researchers participating in large-scale web-based collaborations, opening their earlystage research to the research community in order to encourage broader participation and accelerate discoveries. The result of such large-scale collaborations has been the production of ever-increasing amounts of data. In short, we are in the midst of a data deluge. Accompanying these developments has been a growing recognition that if the benefits of enhanced access to research are to be realised, it will be necessary to develop the systems and services that enable data to be managed and secured. It has also become apparent that to achieve seamless access to data it is necessary not only to adopt appropriate technical standards, practices and architecture, but also to develop legal frameworks that facilitate access to and use of research data. This chapter provides an overview of the current research landscape in Australia as it relates to the collection, management and sharing of research data. The chapter then explains the Australian legal regimes relevant to data, including copyright, patent, privacy, confidentiality and contract law. Finally, this chapter proposes the infrastructure elements that are required for the proper management of legal interests, ownership rights and rights to access and use data collected or generated by research projects.

Access to protection for 'Offshore Entry Persons' aka asylum seekers

In 2001, amendments to the Migration Act 1958 (Cth) made possible the offshore processing of protection claims. The same amendments also foreshadowed the processing of claims by ‘offshore entry persons’ in Australia according to non-statutory procedures. After disbanding offshore processing the then Rudd Labor Government commenced processing of protection claims by ‘offshore entry persons’ in Australia under the Refugee Status Assessment process (RSA). The RSA process sought to substitute well established legislative criteria for the grant of a protection visa, as interpreted by the courts, with administrative guidelines and decision-making immune from judicial review. This approach was rejected by the High Court in the cases M61 and M69. This article analyses these developments in light of Australia’s international protection obligations, as well as considering the practical obstacles that continue to confront offshore entry persons as they pursue judicial review of adverse refugee status determinations after the High Court’s decision.

Nurses driving change to improve access to education and quality in lcinical teaching : A partnership between Australia and Viet Nam

In Viet Nam, standards of nursing care fail to meet international competency standards. This increases risks to patient safety (eg. hospital acquired infection), consequently the Ministry of Health identified the need to strengthen nurse education in Viet Nam. This paper presents experiences of a piloted clinical teaching model developed in Ha Noi, to strengthen nurse led institutional capacity for in-service education and clinical teaching. Historically 90% of nursing education was conducted by physicians and professional development in hospitals for nurses was limited. There was minimal communication between hospitals and nursing schools about expectations of students and assessment and quality of the learning experience. As a result when students came to the clinical sites, no-one understood how to plan their learning objectives and utilise teaching and learning approaches appropriate to their level. Therefore student learning outcomes were variable. They focussed on procedures and techniques and “learning how to do” rather than learning how to plan, implement and evaluate patient care. This project is part of a multi-component capacity building program designed to improve nurse education in Viet Nam. The project was funded jointly by Queensland University of Technology (QUT) and the Australian Agency for International Development. Its aim was to develop a collaborative clinically-based model of teaching to create an environment that encourages evidence-based, student-centred clinical learning. Accordingly, strategies introduced promoted clinical teaching of competency based nursing practice utilising the regionally endorsed nurse core competency standards. Thirty nurse teachers from Viet Duc University Hospital and Hanoi Medical College participated in the program. These nurses and nurse teachers undertook face to face education in three workshops, and completed three assessment items. Assessment was applied, where participants integrated the concepts learned in each workshop and completed assessment tasks related to planning, implementing and evaluating teaching in the clinical area. Twenty of these participants were then selected to undertake a two week study tour in Brisbane, Australia where the clinical teaching model was refined and an action plan developed to integrate into both organisations with possible implementation across Viet Nam. Participants on this study tour also experienced clinical teaching and learning at QUT by attending classes held at the university, and were able to visit selected hospitals to experience clinical teaching in these settings as well. Effectiveness of the project was measured throughout the implementation phase and in follow up visits to the clinical site. To date changes have been noted on an individual and organisational level. There is also significant planning underway to incorporate the clinical teaching model developed across the organisation and how this may be implemented in other regions. Two participants have also been involved in disseminating aspects of this approach to clinical teaching in Ho Chi Minh, with further plans for more in-depth dissemination to occur throughout the country.

Using mobile phones to improve offline access to online information : distributed content delivery

Mobile phones are now powerful and pervasive making them ideal information browsers. The Internet has revolutionized our lives and is a major knowledge sharing media. However, many mobile phone users cannot access the Internet (for financial or technical reasons) and so the mobile Internet has not been fully realized. We propose a novel content delivery network based on both a factual and speculative analysis of today’s technology and analyze its feasibility. If adopted people living in remote regions without Internet will be able to access essential (static) information with periodic updates.

Enduring documents : improving the forms, improving the outcomes

Most Australian states have introduced legislation to provide for enduring documents for financial, personal and health care decision making in the event of incapacity. Since the introduction of Enduring Powers of Attorney (EPAs) and Advance Health Directives (AHDs) in Queensland in 1998, concerns have continued to be raised by service providers, professionals and individuals about the uptake, understanding and appropriate use of these documents. In response to these concerns, the Department of Justice and Attorney-General (DJAG) convened a Practical Guardianship Initiatives Working Party. This group identified the limited evidence base available to address these concerns. In 2009, a multidisciplinary research team from the University of Queensland and the Queensland University of Technology was awarded $90,000 from the Legal Practitioners Interest on Trust Account Fund to undertake a review of the current EPA and AHD forms. The goal of the research was to gather data on the content and useability of the forms from the perspectives of a range of stakeholders, particularly those completing the EPA and AHD, witnesses of these documents, attorneys appointed under an EPA, and health professionals involved in the completion of an AHD or dealing with it in a clinical context. The researchers also sought to gather information from the perspective of Aboriginal and Torres Strait Islander (ATSI) individuals as well people from culturally and linguistically diverse (CALD) groups. Although the focus of the research was on the forms and the extent to which the current design, content and format represents a barrier to uptake, in the course of the research, some broader issues were identified which have an impact on the effectiveness of the EPA and AHD in achieving the goals of planning for financial and personal and health care in advance of losing capacity. The data gathered enabled the researchers to achieve the primary goal of the research: to make recommendations to improve the content and useability of the forms which hopefully will lead to an increased uptake and appropriate use of the forms. However, the researchers thought it was important not to ignore broader policy issues that were identified in the course of the research. These broader issues have been highlighted in this Report, and the researchers have responded to them in a variety of ways. For some issues, the researchers have suggested alterations that could be made to the forms to address the particular concerns. For other issues, the researchers have suggested that Government may need to take specific action such as educating the broader community with some attention to strategies that engage particular groups within communities. Other concerns raised can only be dealt with by legislative reform and, in some of these cases, the researchers have identified issues that Government may wish to consider further. We do note, however, that it is beyond the scope of this Report to recommend changes to the law. This three stage mixed methods project aimed to provide systematic evidence from a broad range of stakeholders in regard to: (i) which groups use and do not use these documents and why, (ii) the contribution of the length/complexity/format/language of the forms as barriers to their completion and/or effective use, and (iii) the issues raised by the current documents for witnesses and attorneys. Understanding and use of EPAs and AHDs were generally explored in separate but parallel processes. A purposive sampling strategy included users of the documents as principals and attorneys, and professionals, witnesses and service providers who assist others to execute or use the forms. The first component of this study built on existing knowledge using a Critical Reference Group and material provided by the DJAG Practical Guardianship Initiatives Working Party. This assisted in the development of the data collection tools for subsequent stages. The second component comprised semi-structured interviews and focus groups with a targeted sample of current users of the forms, potential users, witnesses and other professionals to provide in-depth information on critical issues. Outreach to Aboriginal and Torres Strait Islander Elders and individuals and workers with CALD groups ensured a broad sample of potential users of the two documents. Fifty individual interviews and three focus groups were completed. Most interviews and focus groups focused on perceptions of, and experiences with, either the EPA or the AHD form. In the interviews with Indigenous people and the CALD focus groups, however, respondents provided their perceptions and experiences of both documents. In general, these respondents had not used the forms and were responding to the documents made available in the interview or focus group. In total, seventy-seven individuals were involved in interviews or focus groups. The final component comprised on-line surveys for EPA principals, EPA attorneys, AHD principals, witnesses of EPAs and AHDs and medical practitioners with experience of AHDs as nominated and/or treating doctors. The surveys were developed from the initial component and the qualitative analysis of the interview and focus group data. A total of 116 surveys were returned from major cities and regional Queensland. The survey data was analysed descriptively for patterns and trends. It is important to note that the aim of the survey was to gain insight into issues and concerns relating to the documents and not to make generalisations to the broader population.

An architecture for enhanced assurance in e-health systems

Notwithstanding the obvious potential advantages of information and communications technology (ICT) in the enhanced provision of healthcare services, there are some concerns associated with integration of and access to electronic health records. A security violation in health records, such as an unauthorised disclosure or unauthorised alteration of an individual's health information, can significantly undermine both healthcare providers' and consumers' confidence and trust in e-health systems. A crisis in confidence in any national level e-health system could seriously degrade the realisation of the system's potential benefits. In response to the privacy and security requirements for the protection of health information, this research project investigated national and international e-health development activities to identify the necessary requirements for the creation of a trusted health information system architecture consistent with legislative and regulatory requirements and relevant health informatics standards. The research examined the appropriateness and sustainability of the current approaches for the protection of health information. It then proposed an architecture to facilitate the viable and sustainable enforcement of privacy and security in health information systems under the project title "Open and Trusted Health Information Systems (OTHIS)". OTHIS addresses necessary security controls to protect sensitive health information when such data is at rest, during processing and in transit with three separate and achievable security function-based concepts and modules: a) Health Informatics Application Security (HIAS); b) Health Informatics Access Control (HIAC); and c) Health Informatics Network Security (HINS). The outcome of this research is a roadmap for a viable and sustainable architecture for providing robust protection and security of health information including elucidations of three achievable security control subsystem requirements within the proposed architecture. The successful completion of two proof-of-concept prototypes demonstrated the comprehensibility, feasibility and practicality of the HIAC and HIAS models for the development and assessment of trusted health systems. Meanwhile, the OTHIS architecture has provided guidance for technical and security design appropriate to the development and implementation of trusted health information systems whilst simultaneously offering guidance for ongoing research projects. The socio-economic implications of this research can be summarised in the fact that this research embraces the need for low cost security strategies against economic realities by using open-source technologies for overall test implementation. This allows the proposed architecture to be publicly accessible, providing a platform for interoperability to meet real-world application security demands. On the whole, the OTHIS architecture sets a high level of security standard for the establishment and maintenance of both current and future health information systems. This thereby increases healthcare providers‘ and consumers‘ trust in the adoption of electronic health records to realise the associated benefits.

Facilitating Malaysia towards innovative society : arguing the case for open access policy

The Malaysian National Innovation Model blueprint states that there is an urgent need to pursue an innovation-oriented economy to improve the nation’s capacity for knowledge, creativity and innovation. In nurturing a pervasive innovation culture, the Malaysian government has declared the year 2010 as an Innovative Year whereby creativity among its population is highly celebrated. However, while Malaysian citizens are encouraged to be creative and innovative, scientific data and information generated from publicly funded research in Malaysia is locked up because of rigid intellectual property licensing regimes and traditional publishing models. Reflecting on these circumstances, this paper looks at, and argue why, scientific data and information should be made available, accessible and re-useable freely to promote the grassroots level of innovation in Malaysia. Using innovation theory as its platform of argument, this paper calls for an open access policy for publicly funded research output to be adopted and implemented in Malaysia. Simultaneously, a normative analytic approach is used to determine the types of open access policy that ought to be adopted to spur greater innovation among Malaysians.

Service providers' perceptions of active ageing among older adults with lifelong intellectual disabilities

Background: Considerable attention is currently being directed towards both active ageing and the revising of standards for disability services within Australia and internationally. Yet, to date, no consideration appears to have been given to ways to promote active ageing among older adults with intellectual disabilities. Methods: Semi-structured interviews were conducted with 16 Australian professional direct-care support staff (service providers) about their perceptions of ageing among older adults with lifelong intellectual disabilities and what active ageing might entail for an individual from this population who is currently under their care, in both the present and future. Data were analysed against the six core World Health Organization active ageing outcomes for people with intellectual disabilities. Results: Service providers appeared to be strongly focused on encouraging active ageing among their clients. However, their perceptions of the individual characteristics, circumstances and experiences of older adults with intellectual disabilities for whom they care suggest that active ageing principles need to be applied to this group in a way that considers both their individual and diverse needs, particularly with respect to them transitioning from day services, employment or voluntary work to reduced activity, and finally to aged care facilities. The appropriateness of this group being placed in nursing homes in old age was also questioned. Conclusion: Direct-care staff of older adults with intellectual disabilities have a vital role to play in encouraging and facilitating active ageing, as well as informing strategies that need to be implemented to ensure appropriate care for this diverse group as they proceed to old age.

Privacy oriented access control for electronic health records

Security and privacy in electronic health record systems have been hindering the growth of e-health systems since their emergence. The development of policies that satisfy the security and privacy requirements of different stakeholders in healthcare has proven to be difficult. But, these requirements have to be met if the systems developed are to succeed in achieving their intended goals. Access control is a fundamental security barrier for securing data in healthcare information systems. In this paper we present an access control model for electronic health records. We address patient privacy requirements, confidentiality of private information and the need for flexible access for health professionals for electronic health records. We carefully combine three existing access control models and present a novel access control model for EHRs which satisfies requirements of electronic health records.

Application of Geographic Modeling Techniques to Quantify Spatial Access to Health Services Before and After an Acute Cardiac Event: The Cardiac ARIA Project

Background: Access to cardiac services is essential for appropriate implementation of evidence-based therapies to improve outcomes. The Cardiac Accessibility and Remoteness Index for Australia (Cardiac ARIA) aimed to derive an objective, geographic measure reflecting access to cardiac services. Methods: An expert panel defined an evidence-based clinical pathway. Using Geographic Information Systems (GIS), a numeric/alpha index was developed at two points along the continuum of care. The acute category (numeric) measured the time from the emergency call to arrival at an appropriate medical facility via road ambulance. The aftercare category (alpha) measured access to four basic services (family doctor, pharmacy, cardiac rehabilitation, and pathology services) when a patient returned to their community. Results: The numeric index ranged from 1 (access to principle referral center with cardiac catheterization service ≤ 1 hour) to 8 (no ambulance service, > 3 hours to medical facility, air transport required). The alphabetic index ranged from A (all 4 services available within 1 hour drive-time) to E (no services available within 1 hour). 13.9 million (71%) Australians resided within Cardiac ARIA 1A locations (hospital with cardiac catheterization laboratory and all aftercare within 1 hour). Those outside Cardiac 1A were over-represented by people aged over 65 years (32%) and Indigenous people (60%). Conclusion: The Cardiac ARIA index demonstrated substantial inequity in access to cardiac services in Australia. This methodology can be used to inform cardiology health service planning and the methodology could be applied to other common disease states within other regions of the world.

Rights versus reality : the difficulty of providing 'access to English' in Queensland courts

This project reviewed the success of the Aboriginal English in the Courts booklet which was published by the Department of Justice and Attorney-General in 2000, with a view to improving access to the courts for speakers of Aboriginal English in Queensland. Surveys and interview were conducted with judges, magistrates, prosecutors, legal aid lawyers and courts registry staff. The feedback from the research has shown that the handbook has had little impact on ‘access to English’ in Queensland courts. The problems relate to the tension between protecting the rights of the accused under an adversarial system and legitimately introducing the issues of language uncertainty to the court in a non-prejudicial manner. In addition, the interviews have brought to light emerging language issues in remote communities that cannot be remedied under existing language policy mechanisms, such as the provision of interpreters or friends of court.

Improving access to quality clinical nurse teaching : a partnership between Australia and Vietnam

Until recently, standards to guide nursing education and practice in Vietnam were nonexistent. This paper describes the development and implementation of a clinical teaching capacity building project piloted in Hanoi, Vietnam. The project was part of a multi-component capacity building program designed to improve nurse education in Vietnam. Objectives of the project were to develop a collaborative clinically-based teaching model that encourages evidence-based, student-centred clinical learning. The model incorporated strategies to promote development of nursing practice to meet national competency standards. Thirty nurse teachers from two organisations in Hanoi participated in the program. These participants attended three workshops, and completed applied assessments, where participants implemented concepts from each workshop. The assessment tasks were planning, implementing and evaluating clinical teaching. On completion of the workshops, twenty participants undertook a study tour in Australia to refine the teaching model and develop an action plan for model implementation in both organisations, with an aim to disseminate the model across Vietnam. Significant changes accredited to this project have been noted on an individual and organisational level. Dissemination of this clinical teaching model has commenced in Ho Chi Minh, with further plans for more in-depth dissemination to occur throughout the country.

Access, progress, and fairness : rethinking exclusivity in copyright

This article provides a detailed critique of the incentives-access binary in copyright discourse. Mainstream copyright theory generally accepts that copyright is a balance between providing incentives to authors to invest in the production of cultural works and enhancing the dissemination of those works to the public. This Article argues that dominant copyright theory obscures the possibility of developing a model of copyright that is able to support authors without necessarily limiting access to creative works. The abundance that the Internet allows suggests that increasing access to cultural works to enhance learning, sharing, and creative play should be a fundamental goal of copyright policy. This Article examines models of supporting and coordinating cultural production without exclusivity, including crowdfunding, tips, levies, restitution, and service-based models. In their current forms, each of these models fails to provide a cohesive and convincing vision of the two main functions of copyright: instrumentally (how cultural production can be funded) and fairness (how authors can be adequately rewarded). This article provides three avenues for future research to investigate the viability of alternate copyright models: (1) a better theory of fairness in copyright rewards; (2) more empirical study of commons models of cultural production; and (3) a critical examination of the noneconomic harm limiting function that exclusivity in copyright provides.

Health Workforce Governance: Improved Access, Good Regulatory Practice, Safer Patients

With increasing recognition of the international market in health professionals and the impact of globalism on regulation, the governance of the health workforce is moving towards greater public engagement and increased transparency. This book discusses the challenges posed by these processes, such as improved access to health services and how structures can be reformed so that good practice is upheld and quality of service and patient safety are ensured.