The Oncology Data Network (ODN): Methodology, Challenges, and Achievements
- The Oncology Data Network (ODN) aims to create a collaborative infrastructure for precision medicine, established in over seven European countries with 124 cancer centers.
- The ODN collects concise data on cancer medicine use, adhering to EU GDPR regulations, and has a central European Data Warehouse in France for nonidentified information.
- Data protection measures include nonidentification through automated processing, secure data centers, and privacy rights for individuals. The ODN is authorized by the French CNIL for its data protection robustness.
- A Core Regimen Reference Library (CRRL) ensures data aggregation and comparability, translating diverse data into a common language.
- ODN provides member centers with analytical tools for assessing practices, benchmarking, and tracking, with analyses available in near real time.
- An Information Access and Publications Policy governs analytical requests, ensuring transparency and recognition for data-contributing centers.
- Commercial organizations can access aggregated analytical outputs for a fee, but all analyses must serve a public benefit, in line with information governance and data protection measures.
The Oncology Data Network (ODN) is a cooperative collaborative European data‐sharing platform providing near real‐time information on cancer medicine usage at scale. Its rationale and vision were described in a recent Commentary. Figure 1 summarizes recent advances in oncology and the consequent emergence of significant new challenges that the ODN seeks to address.
Faced with these challenges, recognition is growing that the oncology community needs to share information on its daily decision making. By pooling routine clinical experiences, validation of specific therapeutic approaches within each cancer subtype will become achievable. Professional associations, regulatory agencies, research institutions, and health economists are increasingly focusing on real‐world data (RWD) as a powerful tool for tackling clinical and policy‐related challenges. In rare diseases, which we now know the field of oncology exemplifies, RWD is particularly important because the feasibility of conventional trials diminishes when eligible patient populations shrink. A recent publication stated that RWD enables “crucial insights into quality of care and effectiveness”. In addition, insights gained from the ODN could help quantify the value each treatment brings, paving the way for new value‐based pricing models. Importantly, the ODN could also expedite clinical research by providing an efficient means of searching for specific characteristics of non-identified patients. In turn, this would trigger a mechanism to alert relevant sites that they have potentially eligible trial candidates.
To overcome the limitations in scope, scale, manpower requirements, practicality, and speed inherent to other RWD initiatives, the human data science company IQVIA established the Collaboration for Oncology Data in Europe (CODE), which in turn supported creation of the ODN. Measures have been implemented to ensure that ODN‐derived insights are deployed in the interests of patient care and public benefit and never for direct promotional or insurance purposes. Open to all European cancer centers, all patients with cancer, and all cancer types, the ODN aims to create an extensive infrastructure of real‐world cancer care information. This article describes the ODN's methodological approaches, challenges encountered, and achievements so far.
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