News Release: On International Childhood Cancer Day, health data sharing takes centre stage
Brussels, 15 February – This year’s International Childhood Cancer Day (ICCD, 15 February each year) was marked through a policy webinar organised by the European organisations representing professionals, parents, patients, and survivors in partnership with Member of the European Parliament (MEP) Loucas Fourlas (EPP, Cyprus) on 2 February 2022. The event was informed by the results of a survey conducted among paediatric oncology professionals on the impact of the EU General Data Protection Regulation (GDPR) on childhood cancer research and presented 6 key recommendations to improve the health data-sharing landscape in Europe.
The event made the important point that the GDPR is a valuable regulation with respect to protecting EU citizens’ privacy. However, difficulties in health and research data sharing have been exacerbated since the legislation entered into force in 2018, not least due to its dissimilar interpretation at the Member State level. The survey findings and recommendations were discussed with the European Parliament, the European Commission, the International Agency for Research on Cancer (IARC), academia and patient representatives.
Prof. Gilles Vassal, SIOP Europe Board Member and Policy Lead said:
“The findings of the SIOP Europe survey on the impact of the GDPR on childhood cancer research show a clear need for improving the current data-sharing environment in Europe to maintain and accelerate momentum in childhood cancer research. Among others, a harmonised implementation of the EU General Data Protection Regulation is essential and can help realise the full potential of the upcoming European Health Data Space in the area of paediatric oncology.”
Prof. Carmelo Rizzari, SIOP Europe President said:
“It is essential to utilise and share health research data across Europe and globally. This concerns childhood cancer especially as a collection of life-threatening rare diseases. SIOP Europe is committed to facilitating multi-stakeholder dialogue to optimise the research environment in Europe and drive life-saving progress.”
Ms Delphine Heenen, CCI Europe Committee Member and European Affairs Lead said:
“Patients and parents know that their treatment was improved thanks to prior research. They want to help – and to do so, they are willing to sign an informed consent form to share their data or samples. Yet today, those forms often use long and complex wording. Parents are confused, children are left out. Improving the wording to help all parents and children does not require rocket science but it would increase trust and collaboration between healthcare professionals and patients.”
The rarity of individual paediatric cancer types and their leading collective health burden across Europe make coordinated EU-level approaches crucial. For that reason, Europe’s youngest citizens affected by cancer – our children, our future – must have the right to share their data in order to facilitate cross-border scientific collaboration, improve standards of care, and drive overall progress in childhood cancer.
Note: Full webinar recording and further information are available on the event website.
➨ Read our Comment in The Lancet Oncology on “The impact of the EU General Data Protection Regulation (GDPR) on childhood cancer research in Europe”.
The European Society for Paediatric Oncology (SIOP Europe or SIOPE) is the only pan-European organisation representing all professionals working in the field of childhood cancers. With more than 2,300 members across 35 countries, SIOP Europe is leading the way to ensure the best possible care and outcomes for all children and adolescents with cancer in Europe. The SIOP Europe Strategic Plan Update 2021 – 2026 consolidates the key objectives and implementation platforms to cure more, cure better and reduce inequalities in childhood cancer survival.
Childhood Cancer International – Europe (CCI Europe, or CCI-E) represents childhood cancer parents’ and survivors’ groups as well as other childhood cancer organisations in Europe: 67 organisations in 34 European countries are members of CCI. CCI Europe works together with all relevant stakeholders for the same aim, namely, to help children and adolescents with cancer to be cured, with no – or as few as possible – long-term health problems/late effects.