Towards a Paediatric Oncology Reference Network

There is currently at least a 10 to 20% difference in children’s survival between Western and Eastern European countries, and access to quality care and expertise can save children’s lives no matter where in Europe they live. Less inequalities in healthcare capabilities and children’s survival rates is one of the seven key objectives that our Society is currently addressing through the SIOPE Strategic Plan, in line with the ‘European Standards of Care for Children with Cancer’.

To improve young patients’ outcomes, there is a need to improve access to high quality, timely and accurate diagnosis, care and treatment. To reach this goal, the European Union is currently testing in different disease areas the concept of European Reference Networks (ERN), highly specialised healthcare networks aiming to meet the needs of rare, complex diseases or conditions. ERNs involve multidisciplinary clinical communities, providing expertise and knowledge to inform the decision making of treating physicians from different European Member States.

In 2014 the paediatric oncology community – working closely with parents, patients and survivors – launched the European Expert Paediatric Oncology Reference Network for Diagnostics and Treatment (ExPO-r-Net), a pilot project testing the ERN concept in the field of paediatric haematology-oncology.

ExPO-r-Net aims to prepare the establishment of a ERN to support the provision of cross-border high quality healthcare to children and young people with cancer in a Member State other than the Member State of affiliation, when the expertise with certain cancer conditions is rare and case volume low. By linking pre-existing reference centres inherent to the European Clinical Trial Groups in paediatric haemato-oncology (ECTGs), this network of reference centres will provide access to high-quality diagnostic and medical expertise.

ExPO-r-Net partners have been making progress in pursuing the project’s activities and deliverables, and a roadmap identifying paediatric oncology networks is under preparation – initially including networks on very rare tumours, retinoblastoma, haepatoblastoma and Wilms tumour. Activities are performed within eight project Work Packages: three horizontal ones – to ensure the coordination, dissemination and evaluation of the project – and five Core Work Packages. In particular, partners are both addressing the current needs and challenges of cross-border healthcare co-operations – including the lack of a roadmap to approved expert reference centres for healthcare providers – but they are also investigating the possibility to establish a virtual interoperability architecture for multidisciplinary tumour boards, facilitating children’s access to expert advice  without travelling across Europe. Questionnaires help to define the standard of care profile of centres particularly in countries with low health care expenditures. Site visits in these countries will help to identify coordinating sites that may interact on a professional level with the future PO ERN on behalf of patients with special conditions,  where the case numbers and experience at local sites is low. Coordinating national sites will pave the way for patients& families  to experts sites able to support the  treatment intervention in question either through tumour board advise and/or recommended patient cross boarder referral.  Building on the experience and results from the ENCCA and PanCareSurFup projects, ExPO-r-Net will also explore the cross-border dimension of long-term follow-up – including the further development and dissemination of the ‘Survivorship Passport’ tool. Very specific attention is given to the needs of children with very rare tumours within the scope of this project.

During the past project meetings, partners and representatives from the European institutions joined forces in order to address several aspects related to establishing a Europe-wide reference network for quality treatment and care. Groups focusing on specific disease areas are well advancing in their work plan, there are ongoing discussions as concerns the most suitable IT/e-Health tools for paediatric virtual tumour boards, and there is an ongoing assessment of the state of paediatric haematology-oncology units in Eastern European countries. Legal and administrative issues of virtual tumour boards are being addressed, including liability, informed consent, communication flow and financial compensation. Specific aspects of fully established ERNs are also being clarified, such as the sustainability of the networks, the need for a national designation for each centre intending to participate, the availability of National Contact Points providing information on patient rights when seeking cross-border healthcare, and the future EU tender for the most suitable IT solution for all future ERNs. Other aspects, like the cooperation with EU Member States in the concrete implementation of the different ERNs, still need some more clarification. The first call to establish the future ERNs is expected in spring 2016.

Project Coordinator Professor Ruth Ladenstein actively profiled the project results by taking part in several international events last year, including the European Cancer Congress (25-29 September 2015, Vienna, Austria), the 2nd ERN Conference (8-9 October 2015, Lisbon, Portugal), and the ‘SIOPE-MAC launch of the European Cancer Strategy for Children and Adolescents’ (17 November 2015, European Parliament, Brussels, Belgium). The next ExPO-r-Net Biannual Meeting of project partners will take place on 3-4 March 2016 in Lund, Sweden.

After the submission of the first interim report, the European Commission Agency in charge of ERNs gave a very positive feedback and even congratulated project partners on the results achieved, increasing thereby the visibility of their work at the European level.

In all these achievements, the paediatric haematology-oncology community proved to be well interconnected and to jointly work to reach the ExPO-r-Net overall objective: to reduce the current inequalities in the accessibility and quality of the healthcare provided to children with cancer in different European countries.