The PaDME team is organising an interdisciplinary and engaging Brainhack GDPR workshop that will take place on the 3rd and 4th of December at the University of Malta Valletta campus.
The Brainhack GDPR workshop is designed to create a space where lawyers, scientists, and security experts may exchange experiences and ideas to identify and search for solutions for the challenges encountered by researchers in practice, such as processing brain MRI data according to FAIR principles, sharing research data with other research institutions, or setting up a data bank, all the while ensuring compliance with the General Data Protection Regulation.
Further details will be provided soon. Limited places are available, please e-mail us if interested.
8:30 Registration with coffee
9:00-9:30 Workshop official opening
9:30-10:30 Prof. Dan Svantesson - International issues, research data, and the GDPR: border control and control via jurisdictional claims
10:30-11:00 Morning coffee break
11:00-12:00 Projects pitches
12:00-13:30 Lunch break
13:30-14:00 Dr Mireille Caruana - Overview presentation of the PaDME project
14:00-15:30 Open hacking part 1
15:30-16:00 Afternoon coffee
16:00-17:30 Open hacking part 2 / train track: Dr Caruana (GDPR for neuro imagers)
Evening event
8:30 Coffee
9:00-09:30 Information and Data Protection Commissioner
9:30-10:30 Dr Stephan Heunis - Linked metadata as the key to FAIR, secure, distributed, and collaborative Research Data Management
10:30-11:00 Morning coffee break
11:00-12:00 Open hacking part 3
12:00-13:30 Lunch break
13:30-14:00 Gabriela Skoczylas-Kizak and Roxanne Meilak Borg (EHDS and national implementations of Art.9(2)(j) GDPR)
14:00-15:30 Open hacking part 4 / train track: Dr Claude Bajada (Brain imaging for lawyers)
15:30 Afternoon coffee
16:00-17:30 Open hacking part 5
END OF PROGRAMME
International issues, research data, and the GDPR: border control and control
via jurisdictional claims
On its most basic level, there are two forms of regulatory mechanisms that impact
transborder data flows, including of research data. First, states regulate what
information may enter and exit their borders. This may be termed border control.
Second, states claim jurisdiction over (1) persons (natural or legal), (2) infrastructure
and/or (3) data in a manner that affects transborder data flows. Collectively this may
be termed control via jurisdictional claims.
This presentation examines these issues in the context of the GDPR, and makes
some comparisons to Australian law.
Linked metadata as the key to FAIR, secure, distributed, and collaborative Research Data Management
Data discoverability, sharing, and access across sites that span countries, continents, and privacy regulations remain core challenges to effective global collaboration in research. In this talk we’ll explore how metadata, specifically semantic and linked metadata, opens the door to addressing these challenges. The concepts of linked data, ontologies, and knowledge graphs are ubiquitous in the World Wide Web, where they support both discoverability of open data and restricted access to secure user data. By learning from these advances, we can create both human- and machine-based solutions to make scientific datasets increasingly findable, accessible, interoperable, and reusable. Which tools already exist? How can we incorporate these into our (meta)data management workflows? Which challenges could be solved or circumvented by adopting a comprehensive metadata approach? Let’s explore!
Chaired by Aitor Alberdi Escudero
The parcellation of the brain has been a topic of discussion in the field of neuroscience for several decades. Different criteria can be used to find a good solution for the brian parcellation problem. Under that premise, the BOB Lab created a tool to analyse Functional Magnetic Resonance Images (fMRI) based on functional local connectivity. This tool, which is called the Vogt-Bailey toolbox (VB toolbox), can analyse fMRI data without any additional information about the study or the conditions of the scanning session. During the analysis, the VB toolbox identifies the level of connectivity of each point in the image relative to its neighbours. Hence, each point is assigned a VB index (number from 0 to 1) that represents how connected a point of the brain is with its neighbours. The higher the value of the VB index, the higher the brain activity during the session.
This open-source tool is publically available on Github. However, as of yet, the VB toolbox does not have a Graphical User Interface (GUI), making its use difficult for people who are inexperienced with the VB toolbox. Therefore, good documentation on the VB toolbox is needed. The VB toolbox already has a technical documentation describing what is the functioning of the different types of analysis and the commands to run them. However, the documentation might not be as clear as needed. The aim of this project will be to expand and improve the documentation to make it user friendly for everyone regardless of their knowledge about computers and the VB toolbox.
Chaired by Liam Butler
Written consent is a very important aspect of any data collection, especially when enrolling volunteers within a study that collects sensitive data. At the University of Malta, the University of Malta MRI platform (UMRI) is currently conducting research on different aspects of MRI imaging, and relies on volunteer participation. MRI data is classed as a special category of personal data, and contains both health data and personal data. Therefore, to process MRI data, comprehensive Consent Forms and Information Sheets need to be provided to every participant. When the data is collected, a well-structured Data Management Plan is essential to conform with EU and Local law and guidelines.
In this project, participants will be provided with the current Consent Form, Information Sheet and Data Management Plan of the UMRI platform. The participants are asked to go through these, in detail, and provide detailed changes to ensure the documents are up-to-date, clear and follow current regulations.
Chaired by Kristian Galea
Medical imaging data is structured according to the DICOM (Digital Imaging and Communications in Medicine) standard. This standard ensures that the data contains both the medical images and accompanying metadata which provides details about the imaging protocol, patient information, and healthcare professionals. This has important implications as it entails that in order for medical imaging data to be used for scientific research, appropriate data security steps need to be performed.
This project introduces participants to the basics of DICOM. It also explores key data security methods such as encryption and hashing, which may be applied to safeguard sensitive DICOM metadata. Using Python, participants will learn how to import DICOM data, view the medical image and its associated metadata, and anonymise sensitive metadata. By the end of the project, participants will apply these concepts in a hands-on exercise with a dataset.
Chaired by Roxanne Meilak Borg & Gabriela Skoczylas-Kizak
This project will engage with the pivotal issues surrounding the regulation of health data processing for research purposes in Malta. Participants will critically analyse and discuss a first draft of a proposed law that seeks to govern the establishment and management of biobanks and other data repositories, with a particular focus on the rules for sharing and utilising such data in research contexts. The discussion will aim to address challenges and opportunities in balancing innovative research with robust data protection and ethical considerations.
Next, the project will broaden its scope to address higher-level principles for shaping a comprehensive research framework in Malta and within the EU. Participants will engage in collaborative brainstorming to outline a forward-looking strategy that integrates ethical, legal, and operational dimensions of research governance.
The project will then delve into the necessity and desirability of developing a Code of Conduct for research, founded in the strategy agreed upon and aimed at facilitating the proper application of the GDPR in practice. Participants will explore relevant GDPR provisions, including procedures for the adoption and approval of such a code by the supervisory authority or the European Data Protection Board (EDPB). This discussion will pave the way for preliminary drafting efforts, setting the stage for a document that ensures ethical and lawful health data processing in research.
Finally, if time allows, the project will also involve examining draft data protection clauses tailored for data-sharing agreements. These clauses are designed to regulate the sharing of data stored in the proposed bio/databank with external researchers, ensuring compliance with the GDPR while fostering collaboration. The University of Malta Magnetic Resonance Imaging Platform (UMRI) will serve as a key case study, offering a practical perspective on the challenges and best practices in structuring these agreements.
Together, we aim to shape the future of health data governance and research frameworks in Malta and beyond.