Health data sharing: challenges in an interconnected society
On April 26, 2023, the Health & Ageing Law Lab (HALL) of Vrije Universiteit Brussel (VUB) hosted FACILITATE its successful inaugural Health, Law and Technology (HELT) symposium in Brussels.
The symposium aimed to explore the challenges and impacts of the European Health Data Space (EHDS), the first sectorial legislation proposal for data governance in the EU, with a central theme of health data sharing in an interconnected society. The event brought together experts from various fields, including academics, policymakers, industry, healthcare professionals, scientific researchers, data subjects and NGO representatives, resulting in insightful discussions and interactions.
In the panel centered on EHDS and interoperability of health data Sebastiaan van Sandijk, from the FACILITATE partner Odysseus Data Services, discussed with other experts how AI and other technologies not just benefit from standardization and improved interoperability of health data but also can help improve the quality and reusability of these data, which is essential both for healthcare delivery and research. Other topics presented during the day included a ‘standard health consent’ proposal for data generated in health and wellness apps, sensor technologies and wearables and an approach to introduce fairness of data usage and individual priorities and values into secondary use practices.
In the panel focused on the EHDS and the secondary use of health data for scientific research, the Deputy coordinator of the FACILITATE project, Prof. Johanna Blom, explored how FACILITATE could contribute to advancing participatory clinical research. Prof. Blom underlined how a substantial volume of health data is generated daily, which remains isolated and underutilized beyond the primary clinical trial due to existing ethical, legal, and technical challenges. Integrating data protection regulations, ethical standards, and advanced technology can lead to a harmonized approach to clinical research, benefiting patients and participants involved in CTs as well as the scientific community and public health.
The role of FACILITATE is to shuttle data to actionable information, through GDPR compliant processes embedded in ethical principles, respecting participants rights, meeting the needs of all stakeholders involved in the healthcare ecosystem. It’s a journey towards a more ethical, person-centric, and efficient data-driven future for CTs and data management.