Connecting the European cancer community with data in new and powerful ways (Guest blog)

A guest blog by Julia Levy, CODE External Engagement Lead 

The pace of innovation in cancer treatment offers tremendous potential for patients.  2018 saw the highest number of oncology therapeutics launched per year - 15 new therapies - with many drugs being approved for multiple indications.[1]  However, these advances are generating significant complexity for the oncology community.  Up to date real-world data is critical to help address this complexity.

Population registries provide significant insight into important areas such as prevalence and incidence of disease which provide insights into the impact of health policy over time.  We believe that not only do we need to understand the epidemiological view we also need up to date data that describes today’s clinical practice.  The EFPIA Oncology Data Landscape report identified over 1,100 oncology data sources across Europe. However, whilst they contain a lot of valuable information, these data sources do not provide insights into how patients with cancer are being treated today.

This information is vital to underpin a Learning Healthcare System which can drive improvements in care.  For example, access to real-world data can help identify variations in today’s care which can then be addressed by healthcare systems.  Up-to-date real world data can also help expand and accelerate access to clinical trials - if the rates of patient recruitment to phase III and IV trials achieved in France were extrapolated, then 50% more patients would be enrolled in the UK.[2]  In addition, through the provision of actionable analytics, a path for non-commercial innovation uptake can be created, which offer patients both a better experience and improved outcomes at a lower cost.

The Oncology Data Network (ODN) was established by the Collaboration for Oncology Data in Europe (CODE), led by IQVIA, to help address these needs. It is a collaborative European data-sharing platform designed to provide high quality, relevant information analytically ready within 24 hours whilst minimising the administrative burden on the clinical team.  This infrastructure enables us to understand how patients are actually being treated in clinical practice today.

The purpose of the ODN is to help inform effective and efficient cancer care, identify new areas for research and expedite patient recruitment for clinical trials and studies, and enable novel payment agreements that can help address the challenge of financial sustainability.

Such an initiative would not be possible without broad collaboration with the oncology community and rigorous oversight.  The ODN has worked closely with the community including patient organisations, clinicians, professional bodies and national data protection authorities to understand their needs and develop a tailored approach to addressing them.  It has also put in place rigorous oversight through initiative wide and national governance and established a technology platform and processes which are fully aligned with GDPR.  115 hospitals in 6 countries have already joined the ODN, representing approximately 80,000 patients receiving anti-cancer therapy.  28,000 distinct anti-cancer regimens have been mapped into a common format to enable comparability within hospitals, regions and across countries.  

To find out more about the Oncology Data Network and the Collaboration for Oncology Data in Europe visit: or contact Julia Levy, CODE External Engagement Lead at

[1] IQVIA Global Oncology Trends 2019 Report.
[2] Source: US National Library of Medicine (