Harnessing the potential of data to strengthen the resilience of health systems (Guest blog)
Data helps us to make better decisions about how to treat, predict and prevent diseases. It is critical therefore that we create a positive environment for health data to be used and EFPIA is excited to see the European Commission advance efforts to develop a European Health Data Space (EHDS). The concept of sharing and collaboration has the potential to reduce inequality in healthcare across Europe through promoting health data exchange and supporting prevention strategies and the development of new medicines, medical devices and healthcare solutions.
For data to drive better health outcomes we must strike the right balance between protection of individual privacy while encouraging data access that will benefit individuals and that can also advance research and medical practice. Using the FAIR principles (Findable, Accessible, Interoperable and Re-useable), data can be accessed where it is located (in a distributed network), but we must strive for health data to be of high quality and stored in acceptable formats (interoperable) allowing comparison. Health related decisions can be critical and therefore there is a need for oversight, governance and risk-based policy development that is flexible to future types of technology. As member states or specific disease groups pilot novel ways to share data, we should share learnings to enhance deployment of further uses in other settings.
Fundamental to the EHDS will be that citizens understand the intention of a health data space and how data will be used. This will require clear communication in this technical space and aligned coordination at both a national and regional level within Europe. EFPIA calls for both political leadership and the establishment of a body that will oversee and coordinate the network of institutions to offer support, standardisation and to champion the importance of a European Health Data a Space as part of the global use of data for better health outcomes.
EFPIA looks forward to being a trusted partner in the advancement of the European Health Data Space with bold and positive intent to improve the health of European citizens.