HELT TALKS

What are the 'HELT Talks' ?

HELT stands for Health, Law, and Technology – three broad subject areas that intersect each other in discourses around improving quality and access to health care, or advancing medical research beyond the state-of-the-art. Following on the success of the HELT Symposium, our annual flagship event which brings together representatives from the academia, industry, research organisations, healthcare professionals and policymakers, the HELT Talks was conceived as a year-round (monthly) event, providing a dynamic platform for thought-provoking discussions and stimulating debates on the future of digital health and care, through the prism of regulatory responses and relevant policy initiatives.

What is the typical format of a session at HELT Talks?

HELT Talks sessions are typically divided into two parts. In the first part, each speaker gives a presentation on a specific topic, touching upon particular challenges and open issues around the integration of technology in the realm of health care that require delving into legal and regulatory frameworks. The second part of the session aims at encouraging a deeper level of reflection on the topic under discussion, through organic conversations between the speakers and the audience.

What kind of topics are covered at HELT Talks?

HELT Talks cover a breadth of topics on law, health and technology, ranging from legal challenges for the use of health data and regulatory issues concerning advanced medical technology, to the use of artificial intelligence in medicine, data governance and data extraterritoriality in health care.

TALK of the Month

26 September 2024 | 13.00 - 16.00

Secondary Use of Electronic Health Data under the EHDS Regulation for Health-related Scientific Purposes: Researchers’ Perspectives

The European Commission on 3 May 2022 published the proposal for a regulation of the European Parliament and of the Council on the European Health Data Space (EHDS). This has been seen as the first step towards regulating domain-specific common European data spaces. One of the aims of the proposed regulation is to facilitate the secondary use of electronic health data for research purposes across the EU.

This talk will focus on challenges faced by researchers in the health and medical domain, from a legal, organisational and technical governance perspective, and explore potential solutions to overcome emerging obstacles for secondary data use in health research contexts. We will have the opportunity to hear from Prof. Dr. Thomas Berlage and Prof. Dr. Peter-Bram ‘t Hoen. The talk will be moderated by Prof. Dr. Paul Quinn.

Prof. Dr. Thomas Berlage

Thomas is a Professor at the Computer Science Department of RWTH Aachen University since 2002 and works at the Fraunhofer Institute for Applied Information Technology FIT in Sankt Augustin, where he is responsible for the Digital Health unit. He has been working on data management and data analysis in life science and healthcare, including various AI approaches. The current focus of his work is on dataspaces and data ecosystems in healthcare. In addition to the technical aspects he is also interested in the regulatory aspects and governance of data ecosystems.

Thomas will discuss the challenges of dataspaces as shared infrastructure. He will share his experience on the German genomeDE initiative for genomic medicine, as a use case.

Prof.dr. Peter-Bram’t Hoen

Peter-Bram is a Professor of Bioinformatics at Radboud University Medical Center Nijmegen. He is dedicated to the advancement of personalized medicine approaches for rare diseases by integrative use of -omics and clinical data. Currently, he is directing the data analysis, integration and stewardship pillar within the Netherlands X-omics initiative and international infrastructures such as ERDERA, EURO-NMD registry, EATRIS and ELIXIR. To allow for federated analyses without the need for centralised data sharing, he developed a virtual platform within the context of the European Joint Programme on Rare Diseases (EJP-RD).

Peter-Bram will discuss what challenges he and his team are facing in developing these platforms and how he tackles obstacles for secondary data use in the Dutch Health Research Infrastructure (Health-RI).

Speakers (Full Bio)

Prof. Dr. Thomas Berlage

Aachen University – Fraunhofer Institute for Applied Information Technology

Thomas Berlage is a Professor at the Computer Science Department of RWTH Aachen University since 2002 and works at the Fraunhofer Institute for Applied Information Technology FIT in Sankt Augustin, where he is responsible for the Digital Health unit. He has been working on data management and data analysis in life science and healthcare, including various AI approaches. The current focus of his work is on dataspaces and data ecosystems in healthcare. He has been coordinator of the genomDE architecture, a federated platform for genome medicine being introduced in Germany as a model project from 2024 on. In addition to the technical aspects he is also interested in the regulatory aspects and governance of data ecosystems.

Prof.dr. Peter-Bram ’t Hoen

Radboud University Medical Center Nijmegen

Prof.dr. Peter-Bram ’t Hoen obtained his Master degrees in Biochemistry and Pharmacochemistry cum laude from the Vrije Universiteit Amsterdam. In 2002, he received his PhD degree from Leiden University. His PhD thesis was entitled “Modulating the activity of biotransformation enzymes". He established a research line at Leiden University Medical Center on developing biomarkers and antisense therapies for Duchenne Muscular Dystrophy, exploiting high-dimensional molecular data. He started in February 2018 as full professor of Bioinformatics at Radboud University Medical Center Nijmegen. In this position, he is dedicated to the advancement of personalized medicine approaches for rare diseases by integrative use of -omics and clinical data. ’t Hoen is coordinator of the European SIMPATHIC project aiming for acceleration of drug repurposing for rare neurological, neurometabolic and neuromuscular disorders. He is leading the Radboudumc program on neuromuscular disorders and has myotonic dystrophy as disease focus. Since data from rare disease patient is scarce and fragmented, he dedicates a significant amount of time in making data Findable, Accessible, Interoperable and Reusable and on developing infrastructure for the federated analysis of personal data such as advocated by the Personal Health Train initiative. To this end, ‘t Hoen is directing the data analysis, integration and stewardship pillar within the Netherlands X-omics initiative; he is actively contributing to other national infrastructures such as HealthRI (tactical lead for the Nijmegen region), and international infrastructures such as European Rare Diseases Research Alliance (ERDERA), EURO-NMD registry, EATRIS and ELIXIR. He is FAIR and Open Science ambassador in Radboud university medical center and member of the steeringboard of the Dutch regieorgaan OpenScience.NL.