Patients are at the heart of the Oncology Data Network (ODN)
The ODN, a pioneering collaborative network for European cancer treatment centres, has involved patient associations from the start of the initiative to understand and address their needs and wishes. Patient representatives have helped inform the design and content of this website. Patient involvement within individual countries is also key. Patients are included in the Country Advisory Groups, being established in every country that participates in the ODN.
The ODN team also work closely with patient organisations at European and country level on a range of collaborative projects and have actively involved them in the development of the initiative.
Patient privacy and data security
Patient privacy and data security are key priorities for the design and implementation of the ODN. We use anonymisation methods to automatically render patient data non-identified before it leaves a cancer treatment centre. Non-identified patient data is aggregated (i.e. combined with data from other patients and other treatment centres) to further safeguard privacy. Individual patients also have the right to opt-out of the ODN at any time. Further information on patient rights can be found in our FAQs.
‘CODE has clearly understood the value of involving the patient voice in the right way – and from the very start.’
‘Access to data 24/7 and in real time means that if patients are asking questions, we can quickly respond.’