One of the most important events taking place at EU level on paediatric oncology is the yearly International Childhood Cancer Awareness Day (ICCD) organized by the European Society for Paediatric Oncology (SIOPE). This year’s meeting which took place on the 3rd of February was entitled ‘Balancing Personal Data Protection and Research Progress: The Case of Childhood Cancer’.  It sought to raise awareness of the challenges faced by children and adolescents with cancer and those who take care of them.  It also sought to advocate for better health and research legislation from European policy-makers in light of the most recent regulatory developments such as the Data Protection Regulation.

The meeting was hosted by MEP Glenis Willmott, who has been supporting paediatric oncology activities in EP from many years and chaired by Prof. Gilles Vassal, SIOPE President.

Rafal Swierzewski, ECPC Board Member and coordinator of ECPC’s Paediatric Oncology Working Group attended the meeting. In his opinion, stated during the meeting, one of the most important issues in creating new or improving current legislation is to use examples of best practises that have already been implemented in many areas.  Regarding childhood oncology, the ECPC Board member highlighted how crucial it is to listen to young cancer survivors, who are real experts of their diseases, and have an unique experience.

It is therefore encouraging to see that the European Medicines Agency (EMA) is to create a special group of young experts (children, teenagers and young adults) as part of ENPR-EMA project.  This will help guide, consult and help the Paediatric Committee on issues such as creating children-friendly guidelines on clinical trials, new medicines and the shape and contents of leaflets in medicines for children. The voice of young experts, cancer survivors, could also play a role in shaping new regulations, including Data Protection Regulation which directly considers children and their parents consent on using data and biological materials for research. Similarly, ECPC is seeking to introduce young experts in decision-making processes related to quality of life after disease, access to education, jobs and insurances of cancer survivors.

ECPC’s cooperation with EMA grasped the interest of the conference participants, particularly ECPC’s efforts on paediatric oncology and data protection regulation. Mr Swierzewski also referred to the plan to constitute a young experts working group within ECPC. According to Mr Swierzewski: “It’s such a privilege for me to see how children with cancer become young cancer experts. These young experts have a huge potential and will be protagonists in the process of changing our health care systems in the future. It is our duty, as adults and experienced patients advocates, to sustain and guide young cancer survivors to find their place in modern society. The aging European society cannot afford not to listen to the voice of young people”.