The increasing digitisation and interconnectivity of society are driving the transformation of the healthcare sector and individual experiences and perceptions of healthcare. The ability to share data, computing power, and to apply more complex processing to health data are changing our understanding of what health data is and how it should be used. Furthermore, technological advancements have led to increased generation and storage of health data, with demand for it in scientific research rapidly increasing.
However, health data governance remains a special case in the EU data policy and data protection legal framework, leading to fragmentation in the regulatory picture. Efforts are being made to remove the barriers to the free flow of health data, with the proposed European Health Data Space (EHDS) aiming to enhance individual control of their health data and build an effective mechanism for accessing health data for innovation, research, and policymaking.
The first Health, Law, and Technology (HELT) Symposium will be held on 26 April 2023 in Brussels. This inaugural event will center around the sharing of health data in an interconnected society, bringing together stakeholders to discuss the challenges and potential impact of initiatives such as the EHDS.
The HELT Symposium will feature four panels that address various aspects of the EHDS proposal:
- The first panel will discuss the role of EHDS in the creation of an EU single market for data, its position in the legal landscape, and relevant benefits and challenges.
- The second panel will focus on the importance of interoperability in health data sharing, with various stakeholders sharing their insights regarding the needs and challenges in developing a practical interoperability solution.
- The third panel will examine the legal framework for data sharing schemes and the clash between fundamental rights and the various interests at stake, as well as potential avenues for striking that balance.
- The fourth and final panel will address the challenges and opportunities presented by the demand for secondary use of health data for scientific research.