The CARISMAND project’s final conference took place on the 18th and 19th of September 2018 in Florence, Italy. The conference was attended by several disaster managers and practitioners across Europe and showcased a prototype of the CARISMAND toolkit. The toolkit will include a cultural map and a set of recommendations targeted at the policy makers, disaster manager and citizens. The final version of the toolkit will be published online in the coming months and will include a downloadable version that could be adaptable by users to suit their specific environments and needs. It was also announce at the conference that the SMURD Foundation will take over and sustain the project after the official end in September 2018.
Last week the book „Handling and Exchanging Electronic Evidence Across Europe“ (Biasiotti, M.A., Mifsud Bonnici, J.P., Cannataci, J., Turchi, F. (Eds.)) was published by Springer. Univ.-Prof. Dr. Nikolaus Forgó, Dipl.-Jur. Christian Hawellek, Dipl.-Jur. Friederike Knoke (IRI), and Dipl.-Jur. Jonathan Stoklas (IRI) wrote the book’s chapter on „Privacy Protection in Exchanging Electronic Evidence in Europe“ (pages 255-288). This chapter focuses on privacy and data protection aspects, examining the current legal framework and it’s implications on this topics. Please find the abstract of the chapter below:
„This chapter provides an overview of the legal framework addressing the exchange of electronic evidence and the implications related to privacy and data protection. While in Chap. 11 of this Volume, the current legal situation in general is reviewed, this chapter focuses specifically on privacy and data protection. Whereas many sources of law are subject to examination in both chapters — to a certain extent, this is in the nature of things, as they both deal with legal aspects — this review looks at the sources from a particular point of view. This chapter therefore follows a particular train of thoughts: after introducing the background and relevance of the protection of privacy in the collection and exchange of electronic evidence, and presenting the methodology used, the current European legal framework is examined about existing and applicable rules on data protection regarding electronic evidence, concluding with a final summary and recommendations for a future implementation of data protection standards.“
The book is available as an eBook (PDF + EPUB) and as a hardcover book (ISBN 978-3-319-74872-6). The chapters can also be bought singly.
The CARISMAND Project is now in its final stages, and Work package 6 led by LUH on Citizens’ Rights has completed its Deliverables. Important highlights from those deliverables include: the mapping of human rights relevant in disaster situation (D6.1), a comparative analysis of how national fundamental rights protection are reflected in disasters management from 13 European countries (D6.2), a mapping of how cultural rights have been operationalized in disaster management frameworks and a checklist of cultural considerations in disaster management (D6.3), and privacy by design in disaster management (D6.4). A final conference will be held on 18-19 September 2018 in Florence, Italy, marking the end of the project. For more information, please visit http://www.carismand.eu/news/save-the-date-carismand-final-conference-is-only-few-months-away.html.
The following first press release of the HarmonicSS project has been published in the CORDIS information service. The IRI and L3S are involved in HarmonicSS and support the project in all issues related to privacy, security and ethics coming up within the project.
HARMONICSS project started on 1st of January 2017. The overall concept of the HarmonicSS project (http://www.harmonicss.eu) is to bring together the largest well characterized regional, national and international longitudinal cohorts of patients with Primary Sjögren’s Syndrome (pSS) including those participating in clinical trials, and by taking into consideration the ethical, legal, privacy and IPR issues for sharing data from different countries, to semantically interlink and harmonize them into an integrative pSS cohort structure on the cloud. Upon this harmonized cohort, open services for big data mining, governance and visual analytics will be integrated, to address the identified clinical and health policy pSS unmet needs. Moreover, tools for specific diagnostic procedures (e.g. ultrasonography image segmentation), patient selection for clinical trials and training will be also provided. The users of the HarmonicSS platform are researchers (basic/translational), clinicians, health policy makers and pharmaceutical companies.
pSS is a chronic systemic autoimmune disease characterized by lymphocytic infiltration of exocrine glands and dry eye and mouth manifestations, systemic involvement and an increased risk of evolution into malignant lymphoma, which is the main disease complication. It affects primarily women (9 females/ 1 male) after menopause. Although the cause of pSS is unknown, the disease develops under the influence of a combination of genetic, environmental, and immune factors, as is the case with other autoimmune disorders. Importantly, pSS is relevant not only due to its clinical impact but also as one of the few “model” diseases to link autoimmunity, cancer development (lymphoproliferation) and the pathogenetic role of infection. Thus, the study of pSS can facilitate research in many areas of medicine; for this reason, the possibility for sustainability and expandability of the platform is enhanced. In addition, pSS has a significant impact on the healthcare systems, similar to that of rheumatoid arthritis. The harmonization, semantic interlinking and the subsequent integration of pSS cohorts foreseen in the HarmonicSS project is highly achievable, based on already shared and internationally-accepted classification criteria and measures of disease activity and damage. The objectives of HarmonicSS project are:
- To establish a unified and semantically enriched knowledge sustainable network of the major clinical and research groups working on pSS and a steering committee for coordination
- To analyze the ethical, legal, privacy and IPR issues for integrating cohorts from different countries and patient selection for conducting international clinical trials.
- To achieve individual cohorts data quality and completeness through clinical preparatory actions according to the recent publications sponsored by the European League Against Rheumatism (EULAR).
- To harmonize the individual cohorts and create the integrative cohort on pSS
- To deliver the core ICT services infrastructure for clinicians, researchers and health policy makers
- To address the research and clinical unmet needs in pSS
- To develop the HarmonicSS tools for patient selection in clinical trials, segmentation of salivary gland ultrasonography and training of general practitioners
- To deliver evidence and actionable insights for health policies in pSS and pilot application.
- To achieve sustainability, expandability and exploitation of the platform