The Protection of Data in Medical Research (PaDME) project funded by Xjenza Malta, that was introduced to the Newspoint Community over a year ago, is reaching its end and with this article we sum up some of the achievements and what is coming next. The PaDME project surpassed its initial objectives that were focused on the main aim to unlock the potential of health data for scientific research while upholding the highest standards of privacy compliance. Below you may find just a few success stories that we are particularly proud of and an introduction of the Data Integrity and Stewardship Cluster (DISC) that was inspired by the PaDME project.
The interdisciplinary approach adopted throughout the project was a key strength, effectively integrating legal expertise with scientific and technological insights. This was notably exemplified by the Brainhack GDPR Workshop, which significantly advanced mutual understanding among stakeholders. The Workshop took the form of a hackathon (special thanks to ) which enabled fruitful discussions and cooperations between participants with diverse research backgrounds that were not only from Malta, but also from Australia, Germany, Poland, and the UK. The event featured interesting and thought-provoking keynote addresses and talks, with notable contributions from Dr Ivan Mifsud, Dean of the Faculty of Laws at the University of Malta, Prof. Dan Svantensson from the Faculty of Law at Bond University, Malta’s ¸£ÀûÔÚÏßÃâ·Ñ and Data Protection Commissioner Mr Ian Deguara, and Dr Stephan Heunis from the Institute of Neuroscience and Medicine, Brain & Behaviour (INM-7), Research Center Jülich.
The results of the PaDME project’s research were presented at held in Brno, Czech Republic, and the scientific findings have resulted in academic output that has been submitted for publication to academic journals. Central to the project’s achievements was the development of a draft law and a data access agreement coupled with standard data protection clauses for data sharing across institutions. These deliverables are designed to provide legal certainty for researchers and institutions involved in the collection, storage, sharing, accessing, using and other processing of sensitive data. The project outcomes represent substantial progress towards resolving data protection uncertainties in medical research, setting an important precedent for future interdisciplinary cooperation and legal developments.
There is no doubt that the collaborations established through the PaDME project will endure and prove invaluable to our future research and initiatives. One can already see an example of what succeeded the project. Building on the project’s success, the PaDME Principal Investigator Dr Mireille M Caruana and Co-Investigator Dr Claude J Bajada have played the lead role in establishing the Data Integrity and Stewardship Research Cluster. Within DISC, which serves as a platform for ongoing interdisciplinary research—spanning legal, ethical, scientific, social, and technological perspectives—Drs Caruana and Bajada are particularly dedicated to advancing open science while ensuring the protection of research participants’ rights and privacy. Keeping up with the activities of the DISC Cluster is particularly valuable in light of the new EU Regulation establishing the . We warmly invite you to reach out if you’re interested in becoming a member and contributing actively to our collaborative efforts.
