This session is hosted by Marko Kauppinen.
Reuse from a personal health data space
Speaker: Andre Boorsma, TNO
In C4Yourself, a Dutch public private research project with 15 stakeholders, we aimed to realize an personal health data space that gives real control to citizens over their personal health data and that enables a centralized overview of health outcomes. The technical infrastructure has been developed in close cooperation with all stakeholders and with a broader perspective then only see data as a tradeable commodity. Three aspects were taken in account in the C4Yourself project: social innovation, the technical infrastructure and lastly legal/ethical compliance of re-use of personal health data. In the project a functional design for dynamic consent based on the ‘Gezond Akkoord’ principles was created. The technical infrastructure is based on three pillars: 1) consent flow based on IDS (International Data Spaces), 2) The personal health train PHT (https://www.health-ri.nl/initiatives/personal-health-train) and 3) the FHIR MedMij services that can be applied by the various Personal Health Vault providers. We think this project is important for several reasons: it gives a solution towards patient involvement of secondary use for the EHDS, it demonstrates the possibility of federated querying over personal health vaults and demonstrates a new way of dynamic consent. To gain feedback on this approach and learn from the audience about the way forward.
The value of personal data spaces and health
Elfi Goesaert, VITO
Nathalie Lambrechts, VITO
Raf Buyle, athumi
Esther De Loof, SolidLab
Jarmo Pääkkonen, University of Oulu
Sarah Smits, athumi
In this presentation, we will highlight a citizen-centric approach to data sharing from the concept of a personal data space, the challenges it brings to digital and health literacy, transparency and trust, and how this could work in a more extensive data spaces approach to data sharing. Valuable health, lifestyle and wellbeing data being collected by citizens can be stored in personal data spaces, giving them the opportunity to share with researchers and innovators, and receive personalised services in return. We will present some examples of personal data spaces in health, the opportunities they offer and the main challenges they face. Specifically, we look at the We Are platform for personal health data and some concrete applications in preventive health and healthcare. In Flanders, a large-scale project for the development of personal data spaces is being set up by Athumi, and will illustrate the advantages of re-use of data across domains. We will then look at the concept of data spaces in Europe, the EHDS and how these concepts fit with personal data spaces. We will look at how the concrete examples fit within the EHDS and what open questions remain.
Title: Secondary Use of Health Data
Tobias Bräutigam, Bird & Bird
Nils Löfing, Bird & Bird
In our presentation, we will look at the existing legal issues based on current laws in Finland and Germany in relation to the secondary use of health data for innovative technologies like AI, and discuss whether laws like the Finnish Act on the Secondary Use of Health and Social Data or the EU´s EHDS proposal can tackle the legal issues around such secondary use to finally boost innovation in the healthcare sector. 1. The importance of data in healthcare: We will discuss the crucial role of data in improving medical care and preventing disease, with new technologies such as AI promising even more benefits. Attendees will learn about the potential of existing health data for secondary purposes and the legal uncertainties that currently hinder its use. 2. We will explore legal issues surrounding the secondary use of health data for innovative technologies like AI in Germany and Finland, including issues around the GDPR, national level legislation, and the definition of “scientific research purposes.” Attendees will gain a deeper understanding of these legal complexities and their potential impact on innovation in the healthcare sector. 3. Potential solutions for boosting innovation: Finally, we will explore the Finnish Act on the Secondary Use of Health and Social Data and the EU’s EHDS proposal as potential solutions to boost innovation in the healthcare sector.