We are pleased to share that our 3rd webinar on 20 September 2023 titled ‘Building the European Health Data Space: Leveraging EEHRxF for Secondary Data use in the EHDS’ covered insights from health managers, researchers and policymakers on the topic of interoperability of electronic health data.
Here is a summary of the key insights and discussions from the event.
Moderator Dr Maria Manuel Salazar from the Centro Hospitalar Universitário de Santo António in Portugal guided the conversation, ensuring a comprehensive exploration of the topics at hand.
Our distinguished speakers included:
Prof André Peralta Santos, Acting Deputy Director-General of Health in the Directorate-General for Health in Portugal
Dr Niklas Blomberg, Director of Elixir, the European Infrastructure for Bioinformatics and life-science data
Dr Andrzej Ryś, Principal Scientific Advisor, Directorate-General for Health and Food Safety, European Commission
Benefits and Challenges to harmonising health data collection across borders for research purposes:
The European Health Data Space (EHDS) is reshaping healthcare policies and unlocking the potential for coordinated responses. Initiatives like the vaccination digital certificate, demonstrate how rapid coordinated European responses are possible due to access to harmonised data from European countries. The EHDS regulation promises structured data availability for researchers and industry players, to enhance research, and innovation to fuel healthcare insights and AI-driven medical device development. However, challenges exist. These include designing a digital health authority that is harmonious while EU member states health systems are heterogeneous. Additionally, variable data maturity levels, concerns about access fees, workforce capacity, and litigation concerns linked to limited data access institutions are hurdles to keep in mind. Essential for maximising the EHDS’s impact on European healthcare and competitiveness will be ensuring consistent data access, managing costs, and making essential investments in health systems.
Importance of access to primary health data for secondary research purposes. Some real-life examples:
The importance of access to primary health data for secondary research purposes is increasingly evident. Much of the valuable data for research now originates within the healthcare system, such as human genomics for personalised medicine and rare disease diagnosis. However, the challenge lies in mobilising and making this data available for collaborative research projects. This requires diverse healthcare organisations, including medical centres, hospitals, and public health laboratories, to make data accessible on-site, addressing various modes of access. Maintaining trust between patients, citizens, and local healthcare institutions is paramount, as data federations in Europe aim to bridge local regulations while preserving these trust relationships. Capacity building and training within institutions are critical to enable effective data utilisation. The European genomic data infrastructure serves as a noteworthy example of cross-border data sharing, emphasising the importance of standards and subsidiarity within countries. Furthermore, unexpected insights from sources like administrative healthcare data and the need for diverse datasets for international collaborations have significant potential. Building national capacity is essential for European participation in global research projects which need access to large, diverse datasets that uphold trust and international standards.
Key challenges to address for data collection to inform evidence-based decision-making
The proposed EHDS regulation, prompted by the challenges brought by COVID-19, underscores the critical need for accurate, timely, and high-quality data for effective decision-making. The pandemic exposed issues with data availability and collection, both at the hospital and global levels, emphasising the importance of such data. Although the regulation’s final design is still in negotiation, it carries revolutionary potential. Successful implementation hinges on factors like citizen trust, commitment to integration, change management and data standardisation using the EEHRxF. The complexity lies in aligning various pieces to ensure they function effectively. Continuous feedback and the standardisation of health data across member states are also key components of this transformative effort, highlighting the enduring importance of the lessons learned during the pandemic.
You can also find a copy of the presentation slide here.
For more information on the webinar and future developments in digital health, please contact XpanDH via the Contact Us page.