Here are answers to some of the frequently asked questions about the Oncology Data Network (ODN) and the Collaboration for Oncology Data in Europe (CODE).
What is the Oncology Data Network (ODN)?
The ODN is connecting cancer treatment centres all over Europe. It provides a highly secure platform for hospitals and treatment centres to share non-identified patient data (to protect individual patient privacy) for all cancer types. European cancer treatment centres may join this network free of charge and with no need to adopt new hospital IT systems.
Centres that join the ODN will be able to see how other members of the Network are treating patients, what drugs they are using and how they are used. By pooling data from many thousands of patients, across Europe, researchers will be empowered to spot patterns and trends in the data that will ultimately help drive progress in cancer care. For more information, please see About the ODN.
What type of patient data are you working with?
The ODN will process information about patients’ conditions, their treatment plans and therapy administration. It will also include patient demographics (such as age range, weight range and sex) but the data will be rendered non-identified which means it is not linked to a person’s identity. The ODN follows strict rules about how data can be used – see below for more information.
How is patient privacy protected?
Data privacy and security are top priorities for the ODN, which is fully aligned with the EU General Data Protection Regulation (GDPR) and national regulatory requirements on data usage. In each country, the infrastructure and technology platform are hosted in secure data centre facilities by specialist service providers.
Individual patient data from contributing treatment centres will be rendered non-identified on-site at the treatment centre. This means it will not include information that could be used to identify an individual person such as name, address, hospital number or contact details. The patient data is also aggregated (i.e. combined with data from other patients) before it is analysed and none of the analyses focus on individual patients. For more detail, see How the ODN works.
How can patients opt-out of the ODN?
Patient data in the ODN is non-identified and kept highly secure (please see above) however you have the right to opt-out if you don’t want your data included. If you wish to opt-out, please click here for further information about what to do in your own country.
Note: your healthcare provider should explain your rights clearly to you. Please ask them for additional information if anything isn’t clear. You can also contact the Data Protection Officer for the Oncology Data Network with questions about your personal data.
What is the Collaboration for Oncology Data in Europe (CODE)?
The Collaboration for Oncology Data in Europe (CODE) is supporting the creation of the ODN. This multi-stakeholder, multi-disciplinary, pan-European collaboration was established and is led by a company called IQVIA (formerly QuintilesIMS) with support from leading biopharmaceutical companies. The CODE team is working with healthcare providers and advisory groups across Europe to support the growth and development of the network.
For more information, please see About CODE.
How is the ODN funded and who can access the Network analyses?
IQVIA (formerly QuintilesIMS) is one of the world’s leading providers of real-world evidence services and solutions and has established the CODE team and the ODN initiative. Leading biopharmaceutical companies have also provided support for the establishment of CODE.
Cancer treatment centres wishing to join the ODN can do so free of charge. All members are given access to an interactive analytics dashboard and full access rights to their own data and to all network analyses. Commercial stakeholders will NOT have access to patient data, but they will be able to access aggregated analyses. Read more about accessing information.
Importantly, information from the ODN will only ever be used in the interests of patient care.