What are your views on the balance between public and commercial sources of income?
4. The state of patient information in Poland for childhood cancers
In my opinion state of patients/parents information in Poland for childhood cancers is still insufficient as it comes mainly from informal sources, i.e. informal web-based parents discussion lists or personal internet search, or parent-to-parent communication. There are some parental organizations (NGOs) but they are still relatively week in my opinion. Probably there is only one relatively strong survivors organization which support mainly a single centre only. There are, however, some charity foundations which support children with cancer and their families, i.e. in fulfilling their dreams. Nevertheless I don’t see an organized and well-concerted action providing objective infor-mation to parents and patients taking the national picture as a whole. Of course children who participate in international/national trials are adequately informed through proper information sheets and consent forms which need to be nowadays approved by the local ethical bodies in every case.
Policy
5. What effect has European level funding (Framework Programme etc.) had on European paediatric oncology?
In my opinion there has been little effect of the European level funding (Framework Programme etc.) on European paediatric oncology until now, although the recent ENCCA network of excellence grant awarded may change this picture a bit.
6. Key areas to be addressed by the Commission in the next 5 years
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Researchers-driven (Academia sponsored) paediatric clinical trials, particularly those focused on rare tumours. However one has to keep in mind that rare tumours definition in the world of adult oncology has very little to do with paediatric cancers. All our tumours are then super-rare!•
Facilitation of the paediatric clinical trials by creating a single application (English) file which would not have to be translated to other languages which bears unnecessary costs. It would be even better, if it might be submitted to a single pan-European body in order to save the work on national level.•
Trial calls dedicated specifically for children promoting global overseas cooperation and introduction of translational research into clinics.Poland
Name Jerzy R. Kowalczyk Country Poland
Position Professor
Institution Department of Paediatric Haematology, Oncology and Transplantology, Children’s University Hospital, Lublin
1. How is paediatric care and research delivered in Poland?
Polish population aged 0–18 years: approximately 8 million, annually 1100–1200 new cases of paediatric cancer:
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13 regional centres of paediatric oncology which consist of 18 wards, all units collaborate within Polish Paediatric Leukemia/Lymphoma Study Group and Polish Paediatric Solid Tumors Study Group
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a total of 688 beds•
130 specialists in paediatric oncology/hematology, 50 additional on training•
five paediatric BMT Units, approximately 130 transplants/year Financial resources for paediatric oncology in Poland:•
National Health Fund (health insurance)—diagnostics, therapy, hospitalization, medicines•
National Program Against Cancer (granted by the parliament)—education, standardization of diagnostic procedures, nationwide prophylaxis programs, programs for modernization of medical equipmentPolicy
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Parents organizations and charity foundations (mainly social costs, and individual centre’s support to buy equipment, devices, renovations•
Ministry of Health for some highly specialized procedures•
Ministry of Science for research in medicine2. What are the key issues for paediatric oncology in delivering care and research in Poland?
The main issue is to provide resources for complete diagnosis and therapy of children with cancer. Generally, all paediatric procedures are priced by the National Health Fund below the real costs. Thus, some diagnostic cost of care related for example to molecular or immu-nological examinations we try to cover in part using funds received for research.
3. What are the sources of funding for your paediatric oncology research. What are your views on the balance between public and commercial sources of income?
Research is basically founded by Universities (internal grants)—very limited subsidy to each research unit (the amount of money depends on the research activity of the unit measured as a publications score in last year). More ambitious research project can enter a competition organized by the Ministry of Science twice a year. Occasionally, some possibilities to get a financial support come from non-governmental foundations for specific projects. The commercial sources of income for research in Poland almost do not exist.
4. The state of patient information in Poland for childhood cancers
Patient information for childhood cancer in Poland is provided on the local level (staff of a paediatric oncology ward is mainly responsible and local parent’s organizations are also involved in it). At the central level there several web pages and booklets provided by non-gov-ernmental organization or societies (ex. Polish Union of Oncology—http://www.puo.pl).
5. What effect has European level funding (Framework Programme etc.) had on European paediatric oncology?
Not specified.
6. Key areas to be addressed by the Commission in the next 5 years
In the case of the multicentre network it can give the opportunity for harmonization and standardization especially for new EU Member States. The key issue for the next 5 years in my opinion is to facilitate the implementation of academic clinical trials in each country. In the case of academic trials based on international, multicentres cooperation, the main coordinator should have an opportunity to apply for funding from European Commission (or specific Agency) to cover all expenses related to implementation and to conduct the trial in each participating country.
Policy
Portugal
Name Maria João Gil-da-Costa Country Portugal
Position Paediatric Oncologist Consultant/Responsible for Brain Tumour Patients Institution University Hospital S. João—Porto