Health Data Sharing is a key issue at EU level and the European Commission has introduced a range of new initiatives like the European Health Data Space, the 1 million genomes project and the Artificial Intelligence strategy that aim to facilitate European coordination and cooperation. Member states are also contributing to this work, for example within the Joint Action Towards the European Health Data Space (TEHDAS), which focusses e.g. on governance models and frameworks for the European Health Data Space.
Due to the importance of this topic for clinical care and health research, the BioMed Alliance has contributed to the discussions to share the perspective of medical societies, healthcare professionals and researchers. We have e.g. contributed to the European Commission consultation on the European Health Data Space and are a stakeholder observer in WP 5 and WP7 of the TEHDAS Joint Action.
Survey on health data sharing
As part of this work, the BioMed Alliance conducted a survey ahead of the Spring Meeting to get an idea of your views and experiences in relation to health data sharing. In the survey, medical societies shared that:
• They consider the legislative framework including diverging GDPR implementation and interpretation to be one of the most important challenges in the collection, sharing and access to health data.
• They are concerned about issues around interoperability, ensuring data quality and safeguarding privacy and anonymisation.
• They perceive a lack of expertise, and a large majority highlighted that more guidance would be highly beneficial.
• More support for researchers, academics and medical societies and an exchange of best practices are needed.
• It is necessary to improve harmonisation and to find an appropriate balance between safeguarding privacy and promoting data availability, access and quality.
• Futures initiatives should address legal issues, develop an appropriate infrastructure for health data sharing, enhance data quality and access, ensure privacy and security without negatively impacting data sharing and building citizen trust in data sharing initiatives.