The Fifth National Information Day: Open Access to Scientific Information and Data

This work was supported in part by the EU „2nd Generation Open Access Infrastructure for Research in Europe" (OpenAIRE+). The autumn training school Development and Promotion of Open Access to Scientific Information and Research is organized in the frame of the Fourth International Conference on Digital Presentation and Preservation of Cultural and Scientific Heritage—DiPP2014 (September 18–21, 2014, Veliko Tarnovo, Bulgaria, http://dipp2014.math.bas.bg/), organized under the UNESCO patronage. The main organiser is the Institute of Mathematics and Informatics, Bulgarian Academy of Sciences with the support of EU project FOSTER (http://www.fosteropenscience.eu/) and the P. R. Slaveykov Regional Public Library in Veliko Tarnovo, Bulgaria.

Children’s access to beneficial information in Arab states: Implementation of Article 17 of the Convention on the Rights of the Child in Egypt, Morocco and the United Arab Emirates

In theory, the multiple platforms and transnational nature of digital media, along with a related proliferation of diverse forms of content, make it easier for children’s right to access socially and culturally beneficial information and material to be realised, as required by Article 17 of the UN Convention on the Rights of the Child (CRC). Drawing on data collected during research on children’s screen content in the Arab world, combined with scrutiny of documents collated by the Committee on the Rights of the Child, which monitors compliance with the CRC, this paper explores how three Arab countries, Egypt, Morocco and the United Arab Emirates, presented their efforts to implement Article 17 as part of their periodic reporting on their overall performance in putting the CRC into effect. It uncovers tensions over the relationship between provision, participation and protection in relation to media, reveals that Article 17 is liable to get less attention than it deserves in contexts where governments keep a tight grip on media, and that, by appearing to give it a lower priority, all parties neglect the intersection between human rights in relation to media and children’s rights.

User Interface Abstraction for enabling TV set based Inclusive Access to the Information Society

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A secure framework and related protocols for ubiquitous access to electronic health records using Java sim cards

Ubiquitous access to patient medical records is an important aspect of caring for patient safety. Unavailability of sufficient medical information at the point-ofcare could possibly lead to a fatality. The U.S. Institute of Medicine has reported that between 44,000 and 98,000 people die each year due to medical errors, such as incorrect medication dosages, due to poor legibility in manual records, or delays in consolidating needed information to discern the proper intervention. In this research we propose employing emergent technologies such as Java SIM Cards (JSC), Smart Phones (SP), Next Generation Networks (NGN), Near Field Communications (NFC), Public Key Infrastructure (PKI), and Biometric Identification to develop a secure framework and related protocols for ubiquitous access to Electronic Health Records (EHR). A partial EHR contained within a JSC can be used at the point-of-care in order to help quick diagnosis of a patient’s problems. The full EHR can be accessed from an Electronic Health Records Centre (EHRC) when time and network availability permit. Moreover, this framework and related protocols enable patients to give their explicit consent to a doctor to access their personal medical data, by using their Smart Phone, when the doctor needs to see or update the patient’s medical information during an examination. Also our proposed solution would give the power to patients to modify the Access Control List (ACL) related to their EHRs and view their EHRs through their Smart Phone. Currently, very limited research has been done on using JSCs and similar technologies as a portable repository of EHRs or on the specific security issues that are likely to arise when JSCs are used with ubiquitous access to EHRs. Previous research is concerned with using Medicare cards, a kind of Smart Card, as a repository of medical information at the patient point-of-care. However, this imposes some limitations on the patient’s emergency medical care, including the inability to detect the patient’s location, to call and send information to an emergency room automatically, and to interact with the patient in order to get consent. The aim of our framework and related protocols is to overcome these limitations by taking advantage of the SIM card and the technologies mentioned above. Briefly, our framework and related protocols will offer the full benefits of accessing an up-to-date, precise, and comprehensive medical history of a patient, whilst its mobility will provide ubiquitous access to medical and patient information everywhere it is needed. The objective of our framework and related protocols is to automate interactions between patients, healthcare providers and insurance organisations, increase patient safety, improve quality of care, and reduce the costs.

A secure framework and related protocols for ubiquitous access to electronic health records using Java SIM cards

Ubiquitous access to patient medical records is an important aspect of caring for patient safety. Unavailability of sufficient medical information at the patient point-of-care could possibly lead to a fatality. In this paper we propose employing emergent technologies such as Java SIM Cards (JSC),Smart Phones (SP), Next Generation Networks (NGN), Near Field Communications (NFC), Public Key Infrastructure (PKI), and Biometric Identification to develop a secure framework and related protocols for ubiquitous access to Electronic Health Records (EHRs). A partial EHR contained within a JSC can be used at the patient point-of-care in order to help quick diagnosis of a patient’s problems. The full EHR can be accessed from an Electronic Healthcare Records Centre (EHRC).

Chronic disease, geographic location and socioeconomic disadvantage as obstacles to equitable access to e-health

Despite recent public attention to e-health as a solution to rising healthcare costs and an ageingpopulation, there have been relatively few studies examining the geographical pattern of e-health usage. This paper argues for an equitable approach to e-health and attention to the way in which e-health initiatives can produce locational health inequalities, particularly in socioeconomically disadvantaged areas. In this paper, we use a case study to demonstrate geographical variation in Internet accessibility, Internet status and prevalence of chronic diseases within a small district. There are signifi cant disparities in access to health information within socioeconomically disadvantaged areas. The most vulnerable people in these areas are likely to have limited availability of, or access to Internet healthcare resources. They are also more likely to have complex chronic diseases and, therefore, be in greatest need of these resources. This case study demonstrates the importance of an equitable approach to e-health information technologies and telecommunications infrastructure.

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.

Using a thimble to drink from a fire hydrant: information anxiety and the third sector

In the last 10 years, the third sector has seen an eruption of texts, websites, discussion forums, conferences, new journals, new research centres and sector-specific degrees. This growing abundance of information allows for hitherto impossible networking, collaboration and general awareness of what is happening in the sector. At the same time, however, like staff in many industries, nonprofit professionals can suffer from an increasingly common 21st century malaise known as ‘information anxiety’. It is worth examining the sector through the lens of Information Studies theory, to question what the information technology needs of nonprofits are and how their information management techniques may differ from those in the public and private sectors. There are implications of this both for those within the industry (in terms of governance, training and public relations) and those external to it (who may form relationships with nonprofits on the basis of access to information).

Comparative effectiveness of population interventions to improve access to reperfusion for ST-segment–elevation myocardial infarction in Australia

Background Improving timely access to reperfusion is a major goal of ST-segment–elevation myocardial infarction care. We sought to compare the population impact of interventions proposed to improve timely access to reperfusion therapy in Australia. Methods and Results Australian hospitals, population, and road network data were integrated using Geographical Information Systems. Hospitals were classified into those that provided primary percutaneous coronary intervention (PPCI) or fibrinolysis. Population impact of interventions proposed to improve timely access to reperfusion (PPCI, fibrinolysis, or both) were modeled and compared. Timely access to reperfusion was defined as the proportion of the population capable of reaching a fibrinolysis facility ≤60 minutes or a PPCI facility ≤120 minutes from emergency medical services activation. The majority (93.2%) of the Australian population has timely access to reperfusion, mainly (53%) through fibrinolysis. Only 40.2% of the population had timely access to PPCI, and access to PPCI services is particularly limited in regional and nonexistent in remote areas. Optimizing the emergency medical services’ response or increasing PPCI services resulted in marginal improvement in timely access (1.8% and 3.7%, respectively). Direct transport to PPCI facilities and interhospital transfer for PPCI improves timely access to PPCI for 19.4% and 23.5% of the population, respectively. Prehospital fibrinolysis markedly improved access to timely reperfusion in regional and remote Australia. Conclusions Significant gaps in timely provision of reperfusion remain in Australia. Systematic implementation of changes in service delivery has potential to improve timely access to PPCI for a majority of the population and improve access to fibrinolysis to those living in regional and remote areas.

Juggling information policy, rights to information and copyright licensing to enhance the accessibility and reusability of spatial data : the Australian experience

There is still no comprehensive information strategy governing access to and reuse of public sector information, applying on a nationwide basis, across all levels of government – local, state and federal - in Australia. This is the case both for public sector materials generally and for spatial data in particular. Nevertheless, the last five years have seen some significant developments in information policy and practice, the result of which has been a considerable lessening of the barriers that previously acted to impede the accessibility and reusability of a great deal of spatial and other material held by public sector agencies. Much of the impetus for change has come from the spatial community which has for many years been a proponent of the view “that government held information, and in particular spatial information, will play an absolutely critical role in increasing the innovative capacity of this nation.”1 However, the potential of government spatial data to contribute to innovation will remain unfulfilled without reform of policies on access and reuse as well as the pervasive practices of public sector data custodians who have relied on government copyright to justify the imposition of restrictive conditions on its use.

Unintended pregnancies : reducing rates by improving access to contraception

Unintended pregnancies have significant social, health and financial costs. Importantly, there is surprisingly little information available about the prevalence of unintended pregnancy in Australia. We are currently investigating unintended pregnancy and access to contraception among women aged 18–23 years in rural and urban areas of New South Wales. This is the first step toward understanding how access to effective contraception can be improved and could act as a pilot study for a regular survey of fertility.

Enabling access to and re-use of publicly funded research data as Open Educational Resources : a strategy for overcoming the legal barriers to data access and re-use

Open Educational Resources (OER) are teaching, learning and research materials that have been released under an open licence that permits online access and re-use by others. The 2012 Paris OER Declaration encourages the open licensing of educational materials produced with public funds. Digital data and data sets produced as a result of scientific and non-scientific research are an increasingly important category of educational materials. This paper discusses the legal challenges presented when publicly funded research data is made available as OER, arising from intellectual property rights, confidentiality and information privacy laws, and the lack of a legal duty to ensure data quality. If these legal challenges are not understood, addressed and effectively managed, they may impede and restrict access to and re-use of research data. This paper identifies some of the legal challenges that need to be addressed and describes 10 proposed best practices which are recommended for adoption to so that publicly funded research data can be made available for access and re-use as OER.

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.

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.