ExPO-r-Net partners have been particularly busy in the past months, both in making progress in the achievement of the project’s deliverables and milestones, and in raising awareness on our overall objective to prepare the creation of a European Reference Network (ERN) for paediatric oncology.
The last ExPO-r-Net Executive Committee (ExeCom) Meeting in 2015 took place last 29-30 September 2015 at the Childhood Cancer Research Institute (CCRI) in Vienna, Austria. The aim of this biannual meeting was both to enhance internal communication among partners as concerns the results achieved so far and the next steps forward in the achievement of the project’s objectives, but also to show how the future system could work to the European Commission.
Before and after the ExeCom Meeting, two smaller ExPO-r-Net Working Meetings took place on 7th August in Vienna, Austria, and on 10th October in Cape Town, South Africa.
During all these project meetings, updates have been given from the groups on very rare tumours, Wilms tumour, retinoblastoma and haepatoblastoma, on the feedback from Chafea about the first Interim Report of the project, on the developments as concerns IT/e-Health tools for paediatric virtual tumour boards (VTBs), on the questionnaire circulated in Eastern European countries, on the Survivorship Passport initiative and on all aspects related to the creation of VTBs in Europe.
Importantly, the European Commission informed partners about different aspects:
- all EU Member States now have at least one National Contact Point (NCP) in place where people can find out more about their patient rights and options, and can look for answers to questions on seeking healthcare abroad, e.g. is referral needed, will patients be reimbursed, are preventive measures covered, etc. Each NCP has its own dedicated, multilingual website, and support is provided by the Commission (more information here);
- a tender calling for an institution to evaluate IT solutions to be used within VTBs as communication tools, which will be made available free of charge for all future ERNs. As ExPO-r-Net partners are currently testing an e-Health interoperability architecture, they have been thus involved in this process, and Ruth Ladenstein offered close cooperation with the European institutions to make sure that newly established IT-solutions are suitable for paediatric oncology.
In this framework, Günter Schreier from AIT recently presented this e-Health integrated system – which also includes the case consultation forum developed by CINECA – on 10th December 2015, during the Lisbon e-Health week, within the session “Towards a European interoperability roadmap for sharing data in the framework of the operation of ERNs”.
Finally, we are glad to inform ExPO-r-Net partners that the next biannual Executive Committee meeting will take place on 3-4 March 2016 in Lund, Sweden.