Young EAP blog September 2019: Cross-border research in Europe: we can and should do more.
Despite ongoing improvements in child health across Europe, it still matters where you live in Europe as a child or an adolescent. Considerable differences between European countries have been reported in areas as diverse as uptake of pediatric essential drugs lists and marketing of complementary feeding to children; access to sexual and reproductive health services or support services for mental health; and outcomes for young people with cancer. Trend data for the state of health and causes of child morbidity and mortality are crucial to inform priorities for improving child health, allocate resources to research and monitor progress.
However, data collection across Europe differs considerably, and conducting cross-border research in Europe can be challenging in most disease areas, due to regulatory, economic, and cultural differences. At the same time, cross-border research has enabled important developments and plays a central role in advancing further therapeutic innovation in rare disease areas such as paediatric cancers. The European Reference Network model also ripe with potential for improving cross-border health.
This month, Young EAP and guests had the privilege to meet with EU Commissioner for Health and Food Safety, Vytenis Andriukaitis, to discuss current health issues; challenges faced by young health professionals in Europe; and advocacy for child health. Amongst other things, the Commissioner has been responsible, over the past 5 years, for ensuring the European Commission is ready to support the EU’s capacity to deal with pandemics; build up knowledge on the performance of national health systems; help to address the challenge of increased calls on national health services; and launch European Reference Networks. He will end his term by the end of next October.
In this inspirational event (and webinar), we asked Commissioner Andriukaitis about his views on the idea of founding European Institutes of Health (like the National Institutes of Health in the United States), including entities like a European Cancer Institute, to promote cross-border monitoring of health and facilitate research in Europe.
Key suggestions based on the session with the Commissioner
Monitoring the state of health in neonates, children and adolescents in Europe
The Commissioner emphasised that according to the WHO definition, “health is the state of social, physical and mental well-being”, and thus goes beyond diseases, especially when it comes to pediatrics. He proposed to re-think the way current European institutions address these issues instead of founding new one(s). Commissioner Andriukaitis envisioned extending the current focus of the European Centre for Disease Prevention and Control (ECDC) from its infection control objectives to non-communicable diseases and prevention – much like the Centre for Disease Control and Prevention (CDC) in the United States, which focuses on both communicable and non-communicable diseases. The CDC’s statistical data on different diseases as asthma, cancer, chronic kidney disease, and obesity include data in adolescents, children and neonates. In addition, the CDC has a special focus on issues related to healthy living, like adolescent and school health, healthy weight, tobacco use and vaccines. The health of children in particular is affected by social determinants. Commissioner Andriukaitis would therefore like to see the ECDC equipped with methods to specifically monitor all determinants of health in children. Aggressive marketing towards children is a serious commercial determinant that our children should be protected against.
The axiological data is also very important. Member States should be asked to provide statistical data based on the same methodology to monitor, compare and ultimately improve child health in Europe. Identified differences could serve to support research on (new) preventive strategies. These would also be would be an opportunity to share best practices in the support of children and adolescents in Europe, and act on differences in access to care.
Cross-border research approaches
Child health could greatly benefit from more collaboration between countries, research institutes and industry players. In this light, Commissioner Andriukaitis could see a new role for European Reference Networks (ERNs).
European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to tackle complex or rare diseases and conditions that require highly specialised treatment and concentration of knowledge and resources. ERNs came into operation in early 2017; currently, there are 24 ERNs working on a wide range of thematic issues. All ERNs include children-specific diseases specific; some ERNs, like the ones for congenital anomalies, childhood cancer and transplantation in children, are dedicated solely to children. There are many other fields that could benefit from this approach, for instance in the field of neonatal and paediatric intensive care. Commissioner Andriukaitis proposed to develop a workable infrastructure around these platforms to enable more efficient and dedicated use of already existing research capacities, with an important focus on big data analysis and artificial intelligence.
We couldn’t agree more with Commissioner Andriukaitis. Europe’s future depends on the health and productivity of the next generation, and adult health is rooted in the health and experiences of previous life stages. All children and adolescents in Europe should be given the opportunities and conditions to reach their full health, development and well-being potential. In order to further improve the health of children, we need to know more about their current state of health and join forces when it comes to sharing best practices and promoting research.
- Further child health indicators and aggregator tools across Europe are critical to improve child health outcomes across the continent. At the moment, surveys like the European Health Interview Survey include input from respondents who are 15+ years of age. Health data should thus be expanded to include information on all children under 15. Special attention should be paid to vulnerable populations, like adolescents and children at risk of ill health; and to areas showing considerable subregional gaps in data.
- Child health indicators should include those related to future key determinants. Due to social, economic, and political changes, the role of pediatricians, those of other medical specialties working with children, and the shape of pediatrics, are likely to change. We need to understand better what is required of future pediatric primary, secondary and tertiary care; and have a pro-active approach to future challenges. As such, we should not only use child health indicators to monitor current state of health, but also to identify future key trends that will most likely shape child health (care) in Europe.
- Investing in pediatric research from neonates to adolescents yields a high return on investment and should be exploited by targeted EU research funding.
- The sustainability of ERNs needs to be promoted, particularly when it comes to tackling inequalities in access to the best available treatment and expertise for children across Europe.
- Support for initiatives on interoperability, harmonisation and security of eHealth platforms to foster cross-border research and knowledge transfer for the benefit of pediatric diseases, as derived from the 2019 Manifesto from the European Society for Paediatric Oncology (SIOP Europe) and Childhood Cancer International – Europe (CCI-Europe), available at www.siope.eu/policy-agenda-2019. Public funding is crucial to generate, make available, and enable the analysis of big data. Not only is this needed to increase the availability of anthropometric data in children, but also for use in specialised areas like pediatric haematology oncology and neonatal and paediatric intensive care. The technological efforts to set up this kind of resource are substantial, and issues like artefactual, spurious and incomplete data need be dealt with. Data standards need to be developed, and proprietary, legal, and privacy issues need to be solved.
Commissioner Andriukaitis ended our Inspirational Session by urging young doctors to raise their voices and influence parliaments, friends, and networks; and to be more socially oriented. He emphasised that we will improve child health by coming together.
Stella Kyriakides has been appointed as the new EU Commissioner for Health. Amongst other things, she has been tasked with the creation of a European Health Data Space to promote health-data exchange and support research on new preventive strategies, as well as on treatments, medicines, medical devices and outcomes. We are looking forward to hearing her plans,and hope to collaborate with her advocating European child health and cross-border collaboration and integration of care and research.
Do you want to learn more about the Commissioners Andriukaitis’ career path, his views on the challenges we face as young health professionals, and on how to better advocate for child health in Europe? You can watch the full Inspirational Session/webinar here.
About the authors:
Lenneke Schrier is Chair of Young EAP and the European Junior Doctors’ Representative for Paediatrics to UEMS (European Union of Medical Specialists) Boards, Sections and Multidisciplinary Joint Sections. She works as a research and clinical fellow in Paediatric Oncology at the Princess Máxima Centre in Utrecht, The Netherlands.
Roelof van Ewijk is a member of Young SIOPE (European Society for Paediatric Oncology). He works as a research and clinical fellow in Paediatric Oncology at the Princess Máxima Centre in Utrecht, The Netherlands.
Teresa de Rojas is a member of Young SIOPE (European Society for Paediatric Oncology). She works as a clinical research fellow at the EORTC (European Organisation for Research and Treatment of Cancer), in Brussels, Belgium.
Anna Zanin is the trainee representative of the European Society of Paediatric and Neonatal Intensive Care. She works as a PICU consultant in Vicenza, Italy.
Francisco Ribeiro Mourão is the Chairperson of the Postgraduate Medical Training Committee (PGT) of the European Junior Doctors. He represents Portuguese paediatric trainees within Young EAP and works as a paediatric resident at the Unidade Local de Saúde do Alto Minho, Viana do Castelo in Portugal.
Sian Copley represents UK paediatric trainees within Young EAP, and is the Young EAP Representative for Advocacy. She is a 5th year resident from the UK working in the North East of England.
Ann de Guchtenaere is the Secretary General of EAP. She is a paediatric nephrologist, Guest Professor at Ghent University and works at the Zeepreventorium in Belgium.