Towards an Accessible Personal Health Record

Patient empowerment frameworks, including personal health records (PHR), actively engage technology empowered citizens in their healthcare. Particularly today, with the current increase of chronic diseases, the high growth rate of the elderly and disabled populations and at the same time the much higher cross-border patient mobility,such systems may prove to be lifesaving, cost effective and time saving. Currently, there are many different online applications promoted as being functional, user-friendly and detailed enough to provide a complete and accurate summary of an individual’s medical history. However, it seems that most of the Web services available do not fully adhere to well known accessibility standards, such as those promoted by the W3C, thus turning them away from people with disability and elderly people, who most probably need them most. Additionally, support for mobile devices introduces additional obstacles to users with disability when trying to operate such services. This paper presents fundamental (design for all) guidelines for the successful implementation of an accessible ePHR service that can be operated by any patient including people with disabilities irrespective of the device they use to access this service

An overview of web accessibility in Greece: a comparative study 2004-2008

This communication reports on the results of a web accessibility audit of public Web sites in Greece. The audit was conducted in 2008 by the Human Computer Interaction Laboratory of the Institute of Computer Science of FORTH, in its capacity as the Greek National Contact Centre of the European Design for All e-Accessibility Network. In an earlier e-Accessibility study in 2004, that evaluated approximately 250 public and commercial Web sites in Greece, 73% of the sample failed to meet the most basic requirements for web accessibility (http://www.infosoc.gr/NR/rdonlyres/0B306F9C-A819-4F96-ABB1-A21945D1D2B3/1092/final_report.pdf). Four years later, in the context of a re-audit, a similar sample was examined for compliance with the same web accessibility standard (WCAG 1.0), as set by the Web Accessibility Initiative of the World Wide Web Consortium. The accessibility checks were conducted during the period from March to September 2008. A comparison of the results indicates that although new web development technologies may have been employed, instead of improving the overall status of e-accessibility, this has resulted in a serious deterioration in overall accessibility levels. Such findings—85% of sites failed to comply with Level A—suggest that Greek Web sites are likely to present even more significant access barriers to people with disability than in the past. As Web Accessibility is poorly understood and, until today, new platforms have failed to deliver products that conform to WCAG, the need emerges for a concrete legislative framework to set accessibility specifications for all public Web sites in Greece

White Paper: promoting Design for All and e-Accessibility in Europe.

This White Paper results from the collaboration of Design for All (DfA) and e-Accessibility expert bodies representing the European Union member states [ref: the coordination centres of the national European Design for All e-Accessibility network (EDeAN) in 23 European Union Member States, in this document referred to as NCCs]. The objectives of this White Paper are threefold: (1) to present the current state of affairs of EDeAN, active since 2002 as part of the European Commission’s action line supporting the development of the European Information Society; (2) to outline a roadmap for future initiatives, actively reflecting views of the EDeAN network in specific domains related to DfA, e-Accessibility and e-Inclusion; and (3) to bring forward a set of suggestions and recommendations regarding the activities of the network, aiming to support the creation of a fully inclusive European Information Society. The paper is organised as follows: Section 1 provides a short introduction to DfA and Accessibility in Information Society (IS) and Information Society Technology (IST) developments in Europe. Section 2 provides an overview of policy as well as R&D activities related to DfA and accessibility in IST in Europe. Section 3 briefly describes the role of EDeAN and the new challenges that emerge as a result of the changing European policy environment. Section 4 presents current challenges that emerge in five domains directly related to DfA and accessibility, such as policy and legislation, industry, monitoring and evaluation—benchmarking, standardisation, R&D, and education and training. Finally, Sect. 5 puts forward a number of recommendations with regard to future activities for EDeAN. The contents of this paper reflect results from the open discussion forums supported in the EDeAN website (ref: EDeAN Special Interest Groups, SIGs). The draft paper was written by the EDeAN Secretariat for 2005, FORTH-ICS (Greece), and completed with the support of all NCCs. Support was also provided by the European Commission DG Information Society and Media and by the D4ALLnet project (ref: an EC funded project with the code IST-2001-38833)

Facilitating virtual networking for Design for All in Europe: The HERMES platform

This paper reports on HERMES, the virtual networking platform of the European Design for All eAccessibility Network (EDeAN) that was established in 2002 by the European Commission in order to stimulate European network activities within the area of Design for All, with particular focus on ICT and e-Accessibility. The paper reports on the development and utilisation of the networking platform developed to enable the cooperation of EDeAN members through an accessible interface over the World Wide Web. HERMES is available at http://www.edean.or

Online Communities for All: The Role of Design for All in the Formation and Support of Inclusive Online Communities

An online community is a virtual community composed of individuals who form and maintain online communication, share common goals, interests and needs that provide the reason of community existence, and use common interactive tools that support their networking and communication activities. The term “networking” is traditionally used to describe the formation and maintenance of connections and relationships between individuals, organizations or other interested parties. Virtual or online networking is a form of interpersonal communication that is characterized by the use of electronic means of communication between the different parties and the exchange of messages and information in electronic forms [11]. Hence, virtual or online communities perform virtual networking. This paper aims to examine how the principles of Design for All can support the formation and operation of online communities that are fully inclusive, multi-cultural and multiplatform, thus providing an infrastructure essentially accessible to all their members to carry out virtual networking activities. Following an introduction to online communities and community formation, the paper briefly builds the case for Design for All and the challenges for new information and communication technologies towards a fully inclusive Information Society. Then, based on practical experience and case studies, the paper examines the benefits and challenges of applying the principles of Design for All in the design, development and support of virtual interaction spaces, in order to cater for the diversity of users-community members, as well as of their environments of use. The paper concludes by proposing a set of design issues to be taken into account in the development of online communities for all

A Data-informed Public Health Policy-Makers Platform

Hearing loss is a disease exhibiting a growing trend due to the number of factors, including but not limited to the mundane exposure to the noise and ever-increasing amount of older population. In the framework of a public health policymaking process, modeling of the hearing loss disease based on data is a key factor in alleviating the issues related to the disease issuing effective public health policies. First, the paper describes the steps of the data-driven policymaking process. Afterward, a scenario along with the part of the proposed platform, responsible for supporting policymaking are presented. With the aim of demonstrating the capabilities and usability of the platform for the policy-makers, some initial results of preliminary analytics are presented in a framework of a policy-making process. Ultimately, the utility of the approach is validated throughout the results of the survey which was presented to the health system policy-makers professionals involved in the policy development process in Croatia

Incorporating Accessibility in Web-Based Work Environments: Two Alternative Approaches and Issues Involved

The development of online work and collaboration environments presents a number of opportunities as well as challenges, especially for diverse user populations. They can enhance the mobility of workers and, subject to their design, offer access to people with disability and contribute significantly to tackling existing barriers in employment and social inclusion. At present, a number of web-based work environments have been developed; nonetheless, they hardly reach people with disability due to their low conformance with Web accessibility principles. One of the reasons why incorporating accessibility in online environments remains elusive for most Web service providers is that it is difficult for them to choose among the alternative approaches. This paper examines two different approaches of Web accessibility engineering from a provider’s perceptive and in relation to the resources required in each case. In the first approach, interfaces are made accessible by design, whereas the second approach involves the use of “filter and transformation tools” as a means to transform existing non-accessible interfaces into ones that comply with de facto Web accessibility recommendations. Based on the authors’ experience and hands-on practice on both approaches gained in the context of several European and national projects and through the development of fifteen accessible online tools in total, a study was conducted to examine the cost effectiveness of each approach. As a result, a set of practical guidelines are offered here for assisting web service providers in identifying the most appropriate approach with regards to the different needs of any given project

Pseudonymisation in the context of GDPR-compliant medical research

Pseudonymisation is a data protection technique often used to protect the privacy of individuals when their personal data are being used for research purposes. Not only is it a key ingredient of the General Data Protection Regulation (GDPR) that requires organisations to ensure that the personal data they process is handled in a secure manner, but it is particularly important in assisting medical research given that often relies on sensitive personal data, since it reduces the risk that medical data could be misused or mishandled. For managing their medical data, it is important to ensure that such data are protected against unauthorised access, and can be reutilised in an anonymous fashion, while still authorised personnel is able to identify the study participant that some data belong to (e.g., for personalised interventions, technical alerts, technical support). In addition, the re-identification of a study participant is a pre-requisite for exercising their rights under the GDPR, since it assists organisations in meeting GDPR requirements (such as the right to access, rectify and portability of data). We argue that the application of pseudonymisation is particularly effective when considered during the early stages (Privacy by Design) of digital services implementation, as well as when defining the complementary to these organizational procedures. Aim of this paper is to present the way in which the pseudonymisation mechanism of the SMART BEAR H2020 project supports the triptych of research activities conducted within the context of an observational medical study, legal obligations arising from the regulatory framework for the protection of personal data, and reutilisation of data for research purposes. Evidence-based security and privacy assessments will be conducted on two different H2020 projects to evaluate such privacy practice

A Modelling Framework for Evidence-Based Public Health Policy Making

It is widely recognised that the process of public health policy making (i.e., the analysis, action plan design, execution, monitoring and evaluation of public health policies) should be evidenced based, and supported by data analytics and decision-making tools tailored to it. This is because the management of health conditions and their consequences at a public health policy making level can benefit from such type of analysis of heterogeneous data, including health care devices usage, physiological, cognitive, clinical and medication, personal, behavioural, lifestyle data, occupational and environmental data. In this paper we present a novel approach to public health policy making in a form of an ontology, and an integrated platform for realising this approach. Our solution is model-driven and makes use of big data analytics technology. More specifically, it is based on public health policy decision making (PHPDM) models that steer the public health policy decision making process by defining the data that need to be collected, the ways in which they should be analysed in order to produce the evidence useful for public health policymaking, how this evidence may support or contradict various policy interventions (actions), and the stakeholders involved in the decision-making process. The resulted web-based platform has been implemented using Hadoop, Spark and HBASE, developed in the context of a research programme on public health policy making for the management of hearing loss called EVOTION, funded by the Horizon 2020

Healthier and Independent Living of the Elderly: Interoperability in a Cross-Project Pilot

The ageing of the population creates new heterogeneous challenges for age-friendly living. The progressive decline in physical and cognitive skills tends to prevent elderly people from performing basic instrumental activities of daily living and there is a growing interest in technology for aging support. Digital health today can be exercised by anyone owning a smartphone and parameters such as heart rate, step counts, calorie intake, sleep quality, can be collected and used not only to monitor and improve the individual’s health condition but also to prevent illnesses. However, for the benefits of e-health to take place, digital health data, either Electronic Health Records (EHR) or sensor data from the IoMT, must be shared, maintaining privacy and security requirements but unlocking the potential for research an innovation throughout EU. This paper demonstrates the added value of such interoperability requirements, and a form of accomplishing them through a cross-project pilot