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
A new project “Last-JD-RIoE” has been funded under the MSCA-ITN-2018 Call with IRI as one of 9 beneficiary partners and 15 partner organisations.
Last-JD-RIoE (Law, Science and Technology Joint Doctorate: Rights of the Internet of Everything) is an international, interdisciplinary cotutelle doctoral programme that enables 15 Early Stage Researchers (ESR) to visit several universities for training and research purposes in order to achieve a Multiple Doctoral Title from three project partners at the end of the programme.
The Last-JD-RIoE programme is structured along two dimensions: The first dimension (Internet of Everything -IoE) consists of five technical work packages:
- ‘Internet of Data’ (IoD),
- ‘Internet of Persons’ (IoP),
- ‘Internet of Things’ (IoT),
- ‘Internet of Healthcare’ (IoH) and
- ‘Internet of Money’ (IoM).
The second dimension is interdisciplinary, including the categories ‘Computer Science’, ‘Law’ and ‘Ethical/Social’. The envisaged research will result in a total of 15 individual doctoral research projects from the chosen ESRs.
Am Mittwoch, den 11.07.2018 hält Dr. Björn Steinrötter einen Vortrag im Rahmen einer Vortragsreihe des Instituts für Medien- und Kommunikationsrecht (IMKR) der Universität Siegen. Dr. Steinrötter referiert zum Thema „Das neue Recht auf Portabilität digitaler Daten – hard law oder reine Symbolik?“. Die seit dem 25.05.2018 geltende Datenschutz-Grundverordnung (DSGVO) enthält in Art. 20 auch ein Recht auf Datenübertragbarkeit, um die Souveränität der Betroffenen über ihre Daten zu stärken und Wechsel zwischen Anbietern – wie etwa von Facebook zu Google+ – zu erleichtern. Fraglich bleibt die konkrete Ausgestaltung und damit auch die Praxistauglichkeit dieser Regelung. Der Vortrag beleuchtet die Vorschrift und setzt sich mit dieser Problemstellung auseinander.
Mehr Informationen gibt es auf der Seite der Uni Siegen zur Veranstaltung.