The General Data Protection Regulation (EU) 2016/679 (hereinafter GDPR or this Regulation) has given European countries a unique opportunity to harmonise their legal framework, and to improve the conditions for research and cross-border data flow. Although one of the rationales behind the GDPR was to harmonise the legal framework for data processing to improve conditions for research and crossborder data flow, this has not necessarily been the case.
This Milestone assesses selected, currently operational systems delivering Remote Desktop Access to sensitive data for social sciences and humanities. Prior to selection, criteria were established in three domains: technical, legal, and organizational/administrative. A significant consistency was found across the systems, and this is grounds for cautious optimism that “scaling up” from these systems may be possible. However, several factors contribute to the need to accommodate a solution with substantial flexibility.
In cross-national population studies measuring health and life style factors in ageing by self-reported information is challenging due to several difficulties, such as socio-cultural differences in reporting style, social desirability and access to health care etc. Moreover, in older people a new health condition may remain unrecognised by sharing the same symptoms as an existing disease, or by having symptoms that are interpreted as a result of ageing per se. Also, cognitive decline or depressive symptoms may affect correct recollection.
This report documents the achievement of the Milestone 22 of the SSHOC project, which was to evaluate the feasibility and technical requirements to handle and perform analysis on accelerometer data in large studies. The two main challenges on data transfer and data preparation were identified and successfully addressed. Though the processing takes a significant amount of time and the implementation is cumbersome, it is feasible to do the data processing with standard office computers.
The goal of Task 5.1 - Legal, ethical and technological issues of access to biomedical data is to tackle legal, ethical and technological issues of access to biomedical data. After taking care of legal and ethical issues (D5.1) and assuring data access according to FAIR principles (D5.2 & D5.3), this report is a step towards the actual release of the data (D5.4)
Task 5.2 of the SSHOC project will develop a repository services for institutes (of CESSDA, DARIAH, CLARIN, E- RIHS) running centrally on cloud platforms or to download as a ‘archive in a box’ solution for individual institutes. These services will provide SSH institutions without a data repository service, such a facility for their designated communities. For institutes with limited technical resources, the service offers an opportunity to simply and effectively create an online repository.
SSHOC Milestone 27 refers to the preparation of a draft report on the impact of the GDPR on research and EOSC. The team has described and compared national implementations of the GDPR, with focus on some specific countries, and prepared the draft report as planned in M14 of the project. The actual draft report is attached as an Annex to this Milestone report.
This Milestone assesses the testing of the remote Safe Room connections between the Secure Data
Facilities of the GESIS Secure Data Center and the UKDS Secure Lab. These tests were carried out by
bona fide researchers who had submitted full research applications to the respective data service
and involved the analysis of live data. This report includes a summary of the researcher applications
and tests as well as the researcher feedback collected following the test, which will inform further
improvements to the service for researchers.
The purpose of this milestone is to highlight one section of the Deliverable D5.10 White Paper on Remote Access to Sensitive Data in the Social Sciences and Humanities: 2021 and Beyond. This section concerns recommendations for proposed future solutions.