The COVID-19 pandemic has exposed to a broader audience the pre-existing deficiencies in the manner in which data concerning cancer services and treatment are collected, reported and deployed across Europe.
Too often, there has been an imbalance between ensuring the robustness of provided data, and the time-sensitivity for acquiring and making use of such data. Consequently, decision-makers are frequently relying on the insights gained from outdated information on cancer that may be months (or years) old, hindering relevant and timely decision-making. Conversely, successful examples show the power of the deployment of real-time (or near real-time) data to inform cancer policy change. A case in point involves DATA-CAN, the UK National Health Data Research for Cancer. DATA-CAN’s evaluation of the adverse impact of the COVID-19 pandemic on cancer diagnosis and treatment pathways, was informed by the deployment of real-time data from hospitals across the UK, alongside modelling analysis of the number of associated excess deaths and lost life years in patients with cancer40,41. Its publication prompted national health authorities to take faster action in restoring cancer services.
The heterogeneity of European countries’ cancer data systems is hindering meaningful comparison and attendant learning during the present pandemic. A greater coherence between cancer registries in Europe, allied to the more efficient collection and sharing of cancer data would significantly enhance how we deploy data for more effective and innovative care for Europe’s cancer patients.
In spite of its limited legal mandate, and modest budget, opinion in the health community is positive about the role that the ECDC has played in rapidly gathering, centralizing, and publishing core data about COVID-19. This rapid establishment of a core role for the Agency in the European COVID-19 response has helped professionals, policy makers, the media and the public across Europe to gain a stronger understanding of the current status of the pandemic. It has also empowered decision-makers to produce evidence-based and more timely
As the reality of living with COVID-19 into 2021 becomes increasingly accepted, every country in Europe must ensure timely access and deployment of real-time (or near real-time) cancer data to underpin improved cancer service delivery and enhanced cancer clinical research.
Energies and efforts must be redoubled to bring about greater harmonisation in the European health data domain. EU Member States should positively reinforce the mandate of the European Commission in strengthening the output and realising the value of Europe’s cancer data environment. The creation of a European Cancer Dashboard via Europe’s Beating Cancer Plan, including an urgent ‘Cancer and COVID- 19’ component, would provide an empowering platform to coordinate and better harmonize cancer data across Europe.
In the context of the forthcoming establishment of the European Health Data Space and of the European Cancer Patient Digital Centre recommended by the EU Cancer Mission, we recommend the creation of a pan-European COVID-19 patient data registry, accelerating better understanding of the impact of COVID-19 on cancer outcomes in patients.
We recommend that the European Centre for Disease Prevention and Control be empowered with an expanded mandate and budget to further fulfil its key role in helping European countries to prevent and manage disease, and to communicate important disease-related data to the general public in an easy-to-understand format.
Furthermore, we support calls for the mandate of the ECDC to be extended to cover non-communicable diseases, including cancer.