New Era for Health Data: Secondary Use of Data in the EHDS and DGA
Mar 1, 2025
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Patrick Rastowicz, a legal expert on data protection, joins Herwig Ostermann, a digital health specialist, Katharina Powell, a public health policy academic, and patient advocate Anita Kinesberger. They dive into the complexities of the European Health Data Space, discussing the balance between individual rights and public health needs. They highlight the crucial role of trust and transparency in data sharing, the challenges faced by emergency services, and innovative strategies in patient advocacy. A vibrant discussion on the ethics of health data and the future of personalized medicine makes for an engaging listen.
The podcast highlights the imminent implementation of the European Health Data Space (EHDS) and its impact on national healthcare systems.
Public trust in healthcare data sharing is essential, requiring transparency and effective communication by healthcare professionals to encourage participation.
The need for interoperability and standardized processes in health data management is emphasized to foster seamless collaboration and improve outcomes.
Deep dives
Organizational Overview
The session begins with housekeeping details highlighting the format of the panel debate, which will be streamed live but will focus on the voice contributions rather than filming the audience. There will be a split into three workshops after the debate, each relating to research projects at the department, emphasizing the importance of interaction and participation throughout the event. Presenters are encouraged to introduce their specific workshop topics briefly, which include themes such as secondary use of health data and biobanking under the European Health Data Space (EHDS) from both an Austrian and interdisciplinary perspective. This setup emphasizes the collaborative nature of the event, where attendees are encouraged to engage and share insights actively.
Current Status of Health Data Regulation
An update is shared on the current state of the EHDS, with clarifications that the regulation is progressing with expectations for its official entry into force. There are implications for a two to ten-year rollout period across different aspects of health data usage, indicating a structured timeline for implementation. Preparatory work is already underway to ensure that Austria aligns its healthcare system with the EHDS, aiming to create a robust framework for data access and usage. This involves developing specific platforms for data evaluation within the healthcare sector, which reflects a proactive approach to meet upcoming regulatory commitments.
Stakeholder Perspectives on Data Usage
The discussion highlights varying perspectives on the opt-out mechanism versus opt-in for secondary health data usage, with arguments presented about the importance of public trust in the healthcare system. The experience of other European nations is noted, particularly regarding the hesitancy surrounding data privacy and usage, which could affect public cooperation. Stakeholders emphasize that building trust requires transparency and proactive communication around data usage, especially addressing patient concerns about data sharing for research. Emphasis is placed on the role of healthcare professionals in communicating the benefits and ethical considerations of data sharing to encourage public engagement.
Challenges of Interoperability and Data Integration
The challenges surrounding interoperability and the fragmented nature of health data across Austria are critically evaluated, highlighting the need for standardized processes to enhance data access. The conversation reflects on the existing siloed data systems that inhibit seamless data sharing and collaboration, which could improve healthcare outcomes. The importance of establishing a secure data processing environment that meets EHDS standards is discussed, along with the responsibilities of public institutions in ensuring this security. Innovative solutions are sought to integrate existing data systems while adhering to the highest security standards demanded by both national interests and EU regulations.
The Future of Health Data Research
The implications of the EHDS for future health research are debated, particularly regarding how industry involvement is viewed within this framework. A recognition is made of the need to balance public health interests with private sector research goals while ensuring ethical considerations are upheld in data usage. Perspectives shared indicate that there is still a lack of clarity on the definition of research within the EHDS context, leading to potential conflicts over data ownership and access rights. A collaborative approach involving various stakeholders is suggested to navigate these complexities and ensure the successful implementation of health data initiatives.
Live-recording of an Event that took place at University of Vienna on February 27th 2025.
The processing and sharing of health data is necessary to advance research of various diseases and health conditions as well as an inseparable part of personalized medicine and the concept of digital health. The European Data Strategy is taking shape with the imminent entry into force of new legal acts, such as the Data Act, Data Governance Act and European Health Data Space. These legislations bring changes to the national healthcare systems and data sharing infrastructures.The aim of this event is to bring together stakeholders in Austria, including researchers, hospitals, clinical practitioners, biobanks, data repositories, Austrian health ministry representatives and policymakers, to discuss the legal landscape, opportunities and challenges surrounding secondary use of health data.Link: https://id.univie.ac.at/news-und-events/detailansicht-news-und-events/news/new-era-for-health-data-secondary-use-of-data-in-the-ehds-and-dga-and-its-implementation-in-europe/
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