Enabling access to research data in developing countries : designing a policy and practice framework for Malaysia’s Public Research Universities

Members of the World Trade Organisation (WTO) are obliged to implement the Agreement on Trade-related Intellectual Property Rights 1994 (TRIPS) which establishes minimum standards for the protection and enforcement of intellectual property rights. Almost two decades after TRIPS was adopted at the conclusion of the Uruguay Round of trade negotiations, it is widely accepted that intellectual property systems in developing and least-developed countries must be consistent with, and serve, their development needs and objectives. In adopting the Development Agenda in 2007, the World Intellectual Property Organisation (WIPO) emphasised the importance to developing and least-developed countries of being able to obtain access to knowledge and technology and to participate in collaborations and exchanges with research and scientific institutions in other countries. Access to knowledge, information and technology is crucial if creativity and innovation is to be fostered in developing and least-developed countries. It is particularly important that developing and least-developed countries give effect to their TRIPS obligations by implementing intellectual property systems and adopting intellectual property management practices that enable them to benefit from knowledge flows and support their engagement in international research and science collaborations. However, developing and least-developed countries did not participate in the deliberations leading to the adoption in 2004 by Organisation for Economic Co-operation and Development (OECD) member countries of the Ministerial Declaration on Access to Research Data from Public Funding, nor have they formulated policies on access to publicly funded research outputs such as those developed by the National Institutes of Health in the United States, the United Kingdom Research Councils or the Australian National Health and Medical Research Council. These issues are considered from the viewpoint of Malaysia, a developing country whose economy has grown strongly in recent years. Lacking an established policy covering access to the outputs of publicly funded research, data sharing and licensing practices continue to be fragmented. Obtaining access to research data requires arrangements to be negotiated with individual data owners and custodians. Given the potential for restrictions on access to impact negatively on scientific progress and development in Malaysia, measures are required to ensure that access to knowledge and research results is facilitated. This paper proposes a policy framework for Malaysia‘s public research universities that recognises intellectual property rights while enabling the open access to research data that is essential for innovation and development. It also considers how intellectual property rights in research data can be managed in order to give effect to the policy‘s open access objectives.

Ageing out of place: health and well-being needs and access to home and aged care services for recently arrived older refugees in Melbourne, Australia

Recently arrived older refugees in resettlement countries are a particularly vulnerable population who face many risks to their health and well-being, and many challenges in accessing services.This paper reports on a project undertaken in Victoria,Australia to explore the needs of older people from 14 recently arrived refugee communities, and the barriers to their receiving health and aged care. Findings from consultations with community workers and service providers highlight the key issues of isolation, family conflict and mental illness affecting older refugees, and point to ways in which policy-makers and service providers can better respond to these small but deserving communities.

Universal access to ambulance does not increase overall demand for ambulance services in Queensland, Australia

Objective. To determine the impact of the introduction of universal access to ambulance services via the implementation of the Community Ambulance Cover (CAC) program in Queensland in 2003–04. Method. The study involved a 10-year (2000–01 to 2009–10) retrospective analysis of routinely collected data reported by the Queensland Ambulance Service (QAS) and by the Council of Ambulance Authorities. The data were analysed for the impact of policy changes that resulted in universal access to ambulance services in Queensland. Results. QASis a statewide, publically funded ambulance service. In Queensland, ambulance utilisation rate (AUR)per 1000 persons grew by 41% over the decade or 3.9% per annum (10-year mean = 149.8, 95% CI: 137.3–162.3). The AUR mean after CAC was significantly higher for urgent incidents than for non-urgent ones. However projection modelling demonstrates that URs after the introduction of CAC were significantly lower than the projected utilisation for the same period. Conclusions. The introduction of universal access under the Community Ambulance Cover program in Queensland has not had any significant independent long-term impact on demand overall. There has been a reduction in the long-term growth rate, which may have been contributed to by an ‘appropriate use’ public awareness program.

Access to cardiac rehabilitation does not equate to attendance

Background/Aims Timely access to appropriate cardiac care is critical for optimizing positive outcomes after a cardiac event. Attendance at cardiac rehabilitation (CR) remains less than optimal (10%–30%). Our aim was to derive an objective, comparable, geographic measure reflecting access to cardiac services after a cardiac event in Australia. Methods An expert panel defined a single patient care pathway and a hierarchy of the minimum health services for CR and secondary prevention. Using geographic information systems a numeric/alpha index was modelled to describe access before and after a cardiac event. The aftercare phase was modelled into five alphabetical categories: from category A (access to medical service, pharmacy, CR, pathology within 1 h) to category E (no services available within 1 h). Results Approximately 96% or 19 million people lived within 1 h of the four basic services to support CR and secondary prevention, including 96% of older Australians and 75% of the indigenous population. Conversely, 14% (64,000) indigenous people resided in population locations that had poor access to health services that support CR after a cardiac event. Conclusion Results demonstrated that the majority of Australians had excellent ‘geographic’ access to services to support CR and secondary prevention. Therefore, it appears that it is not the distance to services that affects attendance. Our ‘geographic’ lens has identified that more research on socioeconomic, sociological or psychological aspects to attendance is needed.

Access to Cardiac Rehabilitation does not Equate to Attendance. (On Behalf of the Cardiac ARIA Project. Winner Nursing/Allied Health Professional Investigator Award)

Background/Aims Timely access to appropriate cardiac care is critical for optimizing positive outcomes after a cardiac event. Attendance at cardiac rehabilitation (CR) remains less than optimal (10%–30%). Our aim was to derive an objective, comparable, geographic measure reflecting access to cardiac services after a cardiac event in Australia. Methods An expert panel defined a single patient care pathway and a hierarchy of the minimum health services for CR and secondary prevention. Using geographic information systems a numeric/alpha index was modelled to describe access before and after a cardiac event. The aftercare phase was modelled into five alphabetical categories: from category A (access to medical service, pharmacy, CR, pathology within 1 h) to category E (no services available within 1 h). Results Approximately 96% or 19 million people lived within 1 h of the four basic services to support CR and secondary prevention, including 96% of older Australians and 75% of the indigenous population. Conversely, 14% (64,000) indigenous people resided in population locations that had poor access to health services that support CR after a cardiac event. Conclusion Results demonstrated that the majority of Australians had excellent ‘geographic’ access to services to support CR and secondary prevention. Therefore, it appears that it is not the distance to services that affects attendance. Our ‘geographic’ lens has identified that more research on socioeconomic, sociological or psychological aspects to attendance is needed.

Open access to judgments : Creative Commons licences and the Australian courts

Internet technologies have fundamentally changed the way we obtain access to legal documents and information about the law. However, for judgments of courts and tribunals, copyright management and licensing practices have not kept pace with the digital and online technologies which are now ubiquitous in the web 2.0 era. Under the provisions of the Copyright Act 1968 and the licensing statements on the Australian courts’ websites, judgments may generally be read online, downloaded, reproduced and printed out for personal, non-commercial use or ”in house” use by an organisation. However, beyond these permitted acts, the extent to which judgments can be copied and distributed in digital form online remains unclear. Open content licences (in particular, the Creative Commons (CC) licences) offer an effective mechanism for managing copyright in judgments in a manner that supports their wide public dissemination and reuse while also protecting their integrity and accuracy.

Corporate social responsibility–oriented compliances and SMEs access to global market : evidence from Bangladesh

The convergence of corporate social responsibility (CSR) and corporate governance has immense impact on the participants in global supply chains. The global buyers and retailers tend to incorporate CSR in all stages of product manufacturing within their supply chains. The incorporated CSR thus creates the difficulty to small- and medium-sized manufacturing enterprises (SMEs). Incompetence in standardized CSR practices is an important issue that causes SMEs either losing their scope to access global market directly or serving as subcontractors to large enterprises. This article explores this issue by focusing on Bangladeshi SMEs under the CSR requirement of the important global buyer.

Unravelling the maze : Hepatitis C, psychosocial factors and access to antiviral therapy

In this paper we present an examination of the literature on the psychosocial aspects of hepatitis C (HCV), and ask what are the implications for patients and clinicians regarding access to treatment? Hepatitis C (HCV) is a blood-borne communicable disease that was identified in 1988. In Australia, an estimated 217,000 people live with HCV. The virus causes serious liver inflammation, can lead to liver cirrhosis and a small percentage of sufferers will develop hepatocellular carcinoma. Reports about the psychosocial aspects of HCV appeared from around 1994 indicating a similar set of societal responses to people with HIV; stigmatisation and discrimination. A number of calls were made for the establishment of counselling and support services to address the specific mental health needs of people with HCV. We conducted a systematic review of the literature between 2002-2012 about the psychosocial aspects of HCV and its relationship to access to treatment and identified a number of key issues that suggest the anticipated progress in this area has not been made. The majority of people with HCV already experience marginalisation, and the diagnosis of HCV further compounds their marginalisation through stigma and discrimination and complicates clinical decision-making around treatment. We conclude that the need for mental health services that are capable of addressing the complexities of the psychosocial aspects of HCV remains. Concomitantly, primary care clinicians require greater clarity and consistency about the clinical guidelines for HCV to meet the increasing expectations on them to deliver comprehensive patient management within primary care. (248 words)

Access to East European and Eurasian culture : publishing, acquisitions, digitization, metadata

Review of the book 'Access to East European and Eurasian culture: publishing, acquisitions, digitization, metadata', edited by Miranda Remnek, published by Haworth Information Press, 2009.

Multimodality, media, and access to multiliteracies

In many English-speaking countries bilingual and multilingual speakers of English are integrated into mainstream classrooms, where the teacher is expected to help them “catch up” with speakers of the dominant language. In this presentation, I argue that we teach in culturally and linguistically diverse societies that are increasingly interconnected through a broadened range of multimodal and digital textual practices. Intuitively, one might expect that multimodal approaches are more equitable than exclusively print-based approaches because learners can draw from a broader range of semiotic resources. Yet the potentials of using multiple modes and new digital media to provide greater access to multiliteracies cannot be assumed. I draw on a case study of a multilingual language learner, Paweni, a Thai immigrant, describing how she and her peers negotiated cultural and linguistic difference. These encounters occur during multiliteracies lessons involving both print and digital texts. I theorise a “dialectic of access” to explain the reciprocal interaction between the agency of learners, modes, and media. I apply Giddens’ structuration theory to take into account the social structures – domination, signification, and legitimation – that played an important role in this dialectic of access.

The Convergence Review and the principle of Australians' access to and opportunities for participation

The recent Australian Convergence Review’s second principle states: “Australians should have access to and opportunities for participation in a diverse mix of services, voices, views and information”. However, in failing to define its own use and understanding of the terms ‘access’ and ‘participation’ the Convergence Review exposes itself to criticism. These terms would no doubt be made unambiguously clear should the Review’s recommendations move towards policy, and this paper contributes to this discussion by framing access and participation, from the perspective of the ‘produser’ (Bruns, 2008), around three separate but related issues: the failure to frame the discussion that will be undertaken by the Australian Law Reform Commission’s 2012 2013 Copyright Inquiry; the prioritising of the market over and above media accountability and the health of the public sphere; and the missed opportunity to develop a national framework for digital literacy and advanced digital citizenry.

Enabling open access to and re-use of publicly funded research data in Malaysian public universities : a legal and policy analysis

Numerous statements and declarations have been made over recent decades in support of open access to research data. The growing recognition of the importance of open access to research data has been accompanied by calls on public research funding agencies and universities to facilitate better access to publicly funded research data so that it can be re-used and redistributed as public goods. International and inter-governmental bodies such as the ICSU/CODATA, the OECD and the European Union are strong supporters of open access to and re-use of publicly funded research data. This thesis focuses on the research data created by university researchers in Malaysian public universities whose research activities are funded by the Federal Government of Malaysia. Malaysia, like many countries, has not yet formulated a policy on open access to and re-use of publicly funded research data. Therefore, the aim of this thesis is to develop a policy to support the objective of enabling open access to and re-use of publicly funded research data in Malaysian public universities. Policy development is very important if the objective of enabling open access to and re-use of publicly funded research data is to be successfully achieved. In developing the policy, this thesis identifies a myriad of legal impediments arising from intellectual property rights, confidentiality, privacy and national security laws, novelty requirements in patent law and lack of a legal duty to ensure data quality. Legal impediments such as these have the effect of restricting, obstructing, hindering or slowing down the objective of enabling open access to and re-use of publicly funded research data. A key focus in the formulation of the policy was the need to resolve the various legal impediments that have been identified. This thesis analyses the existing policies and guidelines of Malaysian public universities to ascertain to what extent the legal impediments have been resolved. An international perspective is adopted by making a comparative analysis of the policies of public research funding agencies and universities in the United Kingdom, the United States and Australia to understand how they have dealt with the identified legal impediments. These countries have led the way in introducing policies which support open access to and re-use of publicly funded research data. As well as proposing a policy supporting open access to and re-use of publicly funded research data in Malaysian public universities, this thesis provides procedures for the implementation of the policy and guidelines for addressing the legal impediments to open access and re-use.