Data collected during research study contain important information about diseases and treatments and their impacts on patients’ life and therefore must be used to their full value. The large amount of data available nowadays are often unexploited due to incompatible and inaccessible system or lack of standards. eTRIKS is a project funded by the IMI that try to address these challenges and to provide a platform where medical researchers can access and share valuable data.
On the 20th of October eTRIKS organised an event at the European Parliament in Brussels for discussing the barriers for an optimal use of research data and how to overcome it. Attendees representing patients, funders, researchers and policy makers engaged in a role game to gain a broader insight into the value of data, data sharing and data reuse. While everyone sees the potential and importance of data sharing and reuse, there are issues that must be carefully addressed, such as privacy protection and transparency about the scope of the study.
In this context there is still much to do in building trust among patients on the use of private data for medical research. To this end, providing clear information and education are certainly a solution. But who should be responsible for delivering this? And how to promote it in an effective way and ttarget the key stakeholders?
These aspects need to be elaborated further, but we do believe that a clear commitment from political institutions and a fruitful public debate could facilitate the process.