The secondary use of health data is gaining traction across Europe, as researchers and policymakers look to scale up cross-border data sharing to advance cancer research and deliver more personalised treatments.
Almost 500 cancer researchers gathered at Karolinska Institutet on the outskirts of Stockholm to discuss, among other topics, ways of using next-generation techniques to improve the health and outcomes of cancer patients – including patient data sharing at the European level.
“Sharing and aggregating data addresses the need among oncologists to know more about the characteristics of cancer populations in order to be able to provide more effective, personalised therapies,” Janne Lehtiö, professor of medical proteomics at Karolinska Institutet since 2015, told Euractiv.
Evolving cancer care transforms data
One of the reasons for this is that modern cancer research has led to patients being divided into increasingly specific groups.
“Patients are increasingly stratified into smaller and smaller unique sub-groups based on criteria such as specific mutations, tumour subtypes, histopathological features and therapies used. This makes it extremely important to aggregate patient data at a European level and examine larger cohorts across countries, to achieve sufficient numbers to draw conclusions and form new hypotheses,” he said.
Under the European Health Data Space (EHDS) Regulation, which came into force in March 2025, patient data can be used and categorised into two categories. The primary use of data refers to the information about a patient collected by a healthcare professional to provide direct care. Secondary use is the reuse of data for research, public health, policy making, etc. Under the EHDS, patient consent is needed for primary care use, while secondary research use can proceed with authorisation and strict data safeguards.
Repurposed data for secondary use are being aggregated, anonymised, and pseudonymised (the identity markers of individuals, such as names, are replaced with codes) before being sent to platforms conducting cancer research in Europe.
Virtual cancer data centres
One such platform is the Cancer Core Europe’s Virtual Data Centre (VDC), which aims to become Europe’s leading centre for the collection of real-life data in precision oncology. Cancer Core Europe brings together seven Comprehensive Cancer Centres (CCCs), each comprising a university hospital and a medical university, located in Paris, Stockholm, Barcelona, Cambridge, Heidelberg, Milan and Amsterdam.
Currently, four of these centres are feeding secondary data into standardised platform settings at the VDC. A fifth, the Karolinska Institute, has recently begun contributing, while the remaining two will join at a later stage.
“In total, we now have data from 22,000 patients from these four sites,” said Lehtiö, who is involved in this pillar project as a co-lead for Cancer Core Europe’s VDC. A large increase in numbers is expected, as the seven centres altogether care for 250,000 oncology patients each year.
Founded in 2020, the VDC aims to facilitate the exploration and analysis of large datasets by translational and clinical researchers. These datasets include genomics, pathology, biomedical imaging, and clinical and real treatment-outcome information on patients, among others.
According to Lehtiö, the VDC can be seen as a pilot for implementing the European Health Data Space concerning the collection and sharing of secondary data, in accordance with the EHDS regulation.
Protecting patient integrity
The researchers at the centres use proven technologies, strategies and logistics that comply with the so-called FAIR data stewardship practices and the EU’s privacy legislation, GDPR. Patient integrity is safeguarded at many levels, for example, through restricted access, pseudonymisation algorithms, and the separation of data entities such as names and identification numbers from the study.
In some cases, researchers need to access more sensitive, identifiable patient data in a restricted and controlled manner, such as linking individual genomic profiles to treatment response.
“We are carrying out legal work and operating within a structured framework to gain access to more granular, raw data on certain patient groups that we need to study in more detail,” he told Euractiv, adding:
“In the end, we all aim for the best possible patient care and speed up crucial research to save lives and improve quality of life for cancer patients; this cannot be done without actual data for research”.
[VA, BM]
Source:
www.euractiv.com