Search

Project description

European Standards of Care for Newborn Health is an interdisciplinary European collaboration to develop standards of care for key topics in newborn health. The project brings together around 220 healthcare professionals of different professions, parent representatives and selected industry specialists, from more than 30 countries. The focus of the project is the treatment and care of preterm and ill newborn babies in hospital and as they grow up. Our aim is the development of standards for 11 broad areas of neonatal health. The development project runs from 01/2013 to 12/2018. Standards developed in the project are available here free of charge. The development and publication of standards is an important step towards harmonising treatment and care for preterm and ill newborn babies across Europe. Initiated by the European Foundation for the Care of Newborn Infants (EFCNI), the European Standards of Care for Newborn Health project will serve as a reference for the development and implementation of binding standards and guidelines on a national level. If you want to learn more about this milestone project, watch our image video.

Please download the factsheet to read more about the European Standards of Care for Newborn Health project.

Background information

Worldwide, preterm birth is the leading cause of death during infancy and major cause of morbidity in both, developed and developing countries. Although significant advances have been made in recent years and survival after preterm birth in Europe is high, preterm birth remains a major health issue for infants in Europe. A significant proportion of children, as well as their families, must cope with long-term physical, psychological, emotional and financial challenges. The treatment for preterm and ill newborn babies is very complex and requires specially trained healthcare professionals. The organisation of care, the education of healthcare professionals, and the structure and provision of neonatal care varies widely across Europe. Currently, there are no cross-European guidelines for newborn health. The reasons for this are manifold. One reason is that within the European Union (EU), the national governments have the responsibility to organise and provide healthcare for their citizens[1]. How each country chooses to organise its healthcare system differs between individual EU member states and other European countries.

Differences in health care systems range from access to, funding of and organisation of health care, from education of healthcare professionals to organisation of treatment. Variation is not limited to national borders: Differences are also observed at regional and hospital level. These differences can also been seen in existing guidance, e.g., national guidelines, hospital policy, or the lack thereof. For many areas in newborn health, national – not to mention European – guidelines do not exist. Subjects covered by national guidelines vary from country to country. On a national level, guidelines tend to be developed by either national committees, specialised guidelines-issuing bodies, or national professional associations. On a cross border level, efforts have been made by European professional societies or dedicated consortia to develop European guidelines, but there are still many areas in which a European reference is lacking. The European Standards of Care for Newborn Health project addresses these disparities by developing standards for a wide range of topics in newborn health. For this project we use a geographical definition of Europe. [1] http://europa.eu/pol/health/index_en.htm

Origin and history of the project

The origin of the European Standards of Care for Newborn Health projects goes back beyond the original conception of the project in 2013. As early as 2008, with the Declaration of Rome, demands for improving the treatment and care for preterm babies were formulated by EFCNI and partnering organisations. These demands were substantiated by the publications of the EU benchmarking report “Too little, Too late” in 2010 and the EFCNI White Paper on Maternal and Newborn Health and Aftercare Service “Caring for Tomorrow” in 2011/2012.

The project itself was symbolically kicked off in the European Parliament in 2014, where the Vice President of the Parliament, together with 80 parent and healthcare organisations, signed a large poster to show their support for the development of the European Standards of Care for Newborn Health.

In the following years, while the standards were being developed, the projects itself garnered more and more attention: starting with a workshop in the EU Parliament, being mentioned in an editorial in the Lancet and being selected as a Landmark by Germany – Land of Ideas in 2017.

In order to pave the way for the implementation, two awareness campaigns, Socks for Life and 11 months – 11 topics, accompanied the project. In parallel, parent representatives were trained in how they can support the future implementation of the standards all over Europe. Another step in the implementation will be the EFCNI academy, in which healthcare professionals will be trained in specific topics. The pilot (a training on the establishment of human milk banks) started in October and November 2018 in Germany.

Click on the graphic below to learn more about the origin and history of the European Standards of Care for Newborn Health project.

Coordination

The European Standards of Care for Newborn Health project was initiated and is led by EFCNI. This is the first pan-European organisation and network to represent the interests of preterm and newborn infants and their families. It gathers together parents, healthcare experts from different disciplines, and scientists with the common goal of improving long-term health of preterm and newborn children by ensuring the best possible prevention, treatment, care, and support. As initiator EFCNI developed the idea for the project and won industry partners as well as supporting organisations to support the project. In its role as coordinator, EFCNI supports the work of the Topic Expert Groups and the Chair Committee. EFCNI organises and hosts the meetings of the Chair Committee. Further, EFCNI is responsible for the project administration and communication.