Recommendation 1: Consolidation of patient data repositories

Patient data repositories are an essential source of information both for optimising patient treatment and follow-up and for improving scientific understanding of effects of medical radiation exposure. This set of recommendations is based on the experience acquired through the MEDIRAD project, and addresses two fundamental and challenging aspects related to the consolidation and use of patient data repositories across Europe: adequate storing of the data, the access to such data for research purposes in a manner that protects them according to current regulations (i.e., the General Data Protection Regulation).

Access to an organised collection of clinical image and dose data at the European level, suitably coded to effectively protect the patients’ identities, is of utmost importance to advance radiation protection research, clinical practice, and personalised medicine. Such an infrastructure enables the collection, storage, and retrieval of image and dose data, together with essential clinical / patient data, offering a means by which to efficiently conduct large-scale multinational epidemiological studies, benchmark clinical practice, and optimise patient care through precision medicine.

Furthermore, image and dose data repositories are an essential resource for developing artificial intelligence (AI) solutions that hold the potential to revolutionise medical applications of ionising radiation, including medical imaging, nuclear medicine, radiotherapy, and integrated diagnostics.

The current unavailability of a robust and efficient interconnected system of repositories represents a major barrier to the clinical translation of ionising radiation research, which must be urgently addressed, a conclusion that is supported by the findings of a recent Delphi study conducted within the EURAMED Rocc-n-Roll project. 

However, the creation and upkeep of such repositories is an expensive, resource intensive and lengthy investment, particularly given the heterogeneity of imported data and associated data sources. 

Therefore, it would be greatly beneficial to develop an interconnected image and dose repository system at the European level, guaranteeing patient data protection, featuring standardised characterisation of data sets and which could be maintained over time and remain accessible for numerous research and innovation projects. Such a system could also have subsequent impact at the European and global level.

Click here to read the full recommendation on the consolidation of patient data repositories.