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.

Social science and humanities research infrastructures allow the sharing and safe use of confidential data for research. In recent years there has been a shift towards virtual data enclaves or Remote Access or Remote Desktop systems that offer fewer physical controls. They need to be replaced with other safeguards, including often mandatory training. This training aims to ensure that researchers are equipped with the knowledge required to use secure/legally controlled data safely.

This deliverable is a result of Task 5.1 of the Social Sciences and Humanities Open Cloud (SSHOC) project, focusing on the legal, ethical, and technological issues of access to biomedical data. The task deals with the challenge of adapting the FAIR principles to the access of biomedical data available for the research community. As an intermediate step to the actual data access, this deliverable provides the data access plan for making accelerometer data available.

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 report is Deliverable 5.1 of the Social Sciences and Humanities Open Cloud (SSHOC) project, and a result of Task 1 focusing on the legal, ethical, and technological issues of access to biomedical data. The aim of the task is to make biomedical data available to the research community via data access that follows the FAIR principles.

Background information

Background: The General Data Protection Regulation (EU) 2016/679 (hereinafter referred to as GDPR or the Regulation) 1 has given European countries a unique opportunity to harmonize 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 harmonize the legal framework for data processing to improve conditions for research and cross-border data flow. This represents both risks and opportunities.

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 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.

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.