The Oncology Data Network (ODN) delivers exacting standards of privacy and data protection, information governance and security.
The Oncology Data Network (ODN) is fundamentally committed to protecting the privacy of individuals. The Network does not include information that could be used to identify an individual patient or healthcare professional such as name, address or contact details. Data from contributing centres is rendered non-identified through several stages of automated processing, involving different secure computer algorithms. Furthermore, patient data is always aggregated before the resulting analyses are generated.
Non-identified data is processed and stored in secure data centres which are certified by relevant government agencies as required in each country, or otherwise comply with industry security standards. There are robust contracts in place to ensure the treatment centres maintain visibility and control of their own data. These secure data centres are experienced in handling sensitive health data.
The ODN platform is designed to safeguard privacy. In addition, individual patients can choose to opt-out of the ODN if they don’t want their non-identified data included. The exact mechanism for opting out varies by country, but in all countries, patients can opt-out by contacting the centre where they received their treatment. Healthcare professionals also have the right to control how their individual data is used. If you are a healthcare professional and would like more information, please speak to your Head of Department or Head of Unit or contact the Data Protection Officer for the ODN.
The ODN platform has undergone extensive security checks to safeguard data from unauthorised access. The robustness of the ODN platform has been tested and certified by an independent industry-accredited security company.
The data privacy and security features of the ODN platform and processes are fully aligned with the EU General Data Protection Regulation (GDPR) and national regulatory requirements on data usage. We have consulted closely with National Data Protection Authorities and bodies in all countries in which the ODN is operating. Furthermore, the Commission Nationale de l’Informatique et des Libertés (CNIL) has granted formal authorisation for the ODN in France and has recognised the public benefit in the initiative.
In addition to IT governance, we have established a robust governance structure which involves patient organisations, healthcare professionals, industry and governments. This governance framework ensures the ODN reflects and meets the needs of the broader oncology community and that it works in a complementary way to existing initiatives.
‘We built the ODN platform following the principles of ‘data protection by design’ which ensured data protection was at the forefront of our minds from the outset.’
‘Data security is critical – we are dealing with non-identified patient data in near-real time and this has to be safeguarded.’