What can data do to improve quality cancer care in Europe?
Member organisations of ECCO, including the European Society of Breast Cancer Specialists (EUSOMA), the European Society of Surgical Oncology (ESSO), the European Organisation for Research and Treatment of Cancer (EORTC), the Organisation of European Cancer Institutes (OECI), and others, such as Digestive Cancers Europe, European Registration of Cancer Care (EURECCA) and the European Commission, joined the ECCO meeting in the European Parliament on 5 November to discuss answers to this question.
The practice changing and quality of life enhancing benefits of strong collection and analysis of data in respect to cancer care and treatment were outlined, with real life practice examples. These included reference to how surgical procedures have been further optimised and quality control improved by better access and use of data.
New openings for improved economic analysis in respect to cancer care and its sustainability are also coming forward thanks to registry initiatives. This has special relevance in areas such as demonstrating long term cost effectiveness from screening policies.
Patient organisations such as Digestive Cancers Europe are now able to access fields of information to enable powerful comparison between countries on system performance, helping to heighten political pressure for improvement in target countries. However, serious gaps in access and transparency to relevant but existing data remains. Without more open sharing of data on performance the achievement of Article 1 of the European Cancer Patient’s Bill of Rights (“The right of every European citizen to be informed and involved in his/her care”) is greatly detrimented.
The new challenges and opportunities represented by Real World Data were also explored. Denis Lacombe, Director General of EORTC, outlined how existing research paradigms could now be reimagined to enable much greater levels of treatment optimisation if only the political will is summoned and enacted. In this respect, reference was made to the widely endorsed EORTC Treatment Optimisation manifesto.
Policy recommendations made at the meeting, to assist the development of the EU Cancer Mission and European Beating Cancer Plan in fully utilising data as a tool for improving quality of cancer care in Europe, included:
- Better security of funding for cancer registry initiatives
- Further attention and commitment to harmonisation of approach, terminologies and definitions by cancer registries across Europe
- Stronger clinical involvement and leadership in cancer data initiatives
- Better access to relevant yet existing data on system performance for patient organisations and the public
- Attention to further improving the European cancer data landscape in the context of the emergent EU Cancer Mission and European Beating Cancer Plan
ECCO kindly thanks Irena Joveva MEP (Renew Europe, Slovenia) and the Renew Europe political group for their support for the meeting and the issues raised.
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