The vision behind the project is that all babies receive the best possible treatment and care no matter where in Europe they are born. Currently, care standards differ between European countries and even between hospitals within the same country. Although formalised standards have been developed or are under development in some countries, this is not the case for all countries. With this project, we want to ensure that there are standards for the care of preterm and ill newborn infants everywhere in Europe.
The project aims at producing and publishing a comprehensive set of care standards for preterm and ill newborn infants in Europe.
The project, initiated and coordinated by EFCNI, brings together health experts from different professions, parents, relevant third parties, and industry partners.
The standards will cover all key topics of the care provision for preterm and ill newborn infants. This includes topics such as the medical treatment and care, hygiene and infection prevention, nutrition of preterm and ill newborns, follow-up and continuing care and training of neonatal health professionals. You find an overview over all topics here: Topics
There will be two main units in the development process. Topic Expert Groups and a Chair Committee. The Topic Expert Groups will compile topic standards. These will be forwarded to the Chair Committee. From there, standards will enter a feedback and review phase by the supporting organisations, before they are submitted for endorsement. Finally, standards will be made publicly available on the project’s website.
The project has 11 Topic Expert Groups. These are:
Full members are all chairs and vice chairs, the members of EFCNI’s Parent Advisory Board and the EFCNI Executive Board. Representatives of the project’s industry partners and of selected international organisations can join the Chair Committee as non-voting observers.
The Chair Committee meets annually. Past meetings have taken place in September 2014 and in June 2015.
Parent representatives are actively involved in all stages of the project. Representatives of parent organisations are active members in the Topic Expert Groups. They are directly involved in drafting the standards. Further input to the work of the Topic Expert Groups can come from the Parents’ Knowledge Forum. This forum can be consulted on specific questions by all Topic Expert Groups. All parent organisations – this includes parent organisations that are not based in Europe – can contribute to the forum depending on their time and expertise.
In the Chair Committee, parents are represented by the members of the EFCNI Parent Advisory Board. They are active members of the Chair Committee and have the right to vote.
When the standards are drafted and have passed the Chair Committee, parent organisations that support the project are invited to review them during the feedback process. After standard finalisation, the supporting parent organisations can endorse the standards.
Parent organisations bundle the knowledge and experience of parents and other close relatives. They know what it means if a baby is ill or born preterm. From their own experiences and the experiences of the families they work with, they have acquired a wealth of knowledge about life in the NICU and after discharge. These experiences are of great importance and add to the expertise of the different health professions. Therefore, parent organisations are involved to represent the families of preterm and ill born children.
If you are not already, please consider joining the project as a supporting organisation. In this role, you will be an official partnering organisation that can contribute to the feedback and endorsement processes.
Independent of whether you are a supporting organisation or not, we would like to ask you to join the Parents’ Knowledge Forum. Your input on specific questions will be extremely valuable to support the parent members of the Topic Expert Groups with your experiences and to get to know more about the situation in your country/area. Of course, all information will be treated confidentially.
Further, you can support the project, by sending us all relevant material from your country, e.g., published guidance, guidelines, or standards as well as research studies or articles.
Every parent organisation can join the Parents’ Knowledge Forum. Further, you can also officially become a supporting partner of the project. To become a supporting organisation, please use the contact form on this website or get in touch with the EFCNI team (contact EFCNI). Supporting organisations take part in the feedback and endorsement processes of the project.
Parents are full partners in this interdisciplinary project. That means that parents and health professionals work side by side to develop standards that will be both, evidence- and experience-based.
Parent organisations have the chance to contribute with their knowledge and experience in all phases of the project. There are different ways how you can be involved and you can decide how much you want to contribute.
The project is a European project. The more you contribute, the better the situation in your country can be taken into account. You are the advocate for your country.
Depending on where you are from, different aspects of the project will be your highest priority. With this project, we want to develop standards you can use for your work. The standards shall serve as a reference for you when you want to make improvements in your country.
Many experts from all over Europe will be working on the project. This gives the project credibility and strengthens your local work.
No, joining the project as a supporting organisation will not cause your organisation any direct costs.
Yes, as a supporting organisation you can call yourself a “supporting organisation of the EFCNI European Standards of Care for Newborn Healh project”.
If your organisation participates in the Parents’ Knowledge Forum but is not a supporting organisation, you can call yourself a “Member of EFCNI’s Parents’ Knowlegde Forum”.
A list of organisations who endorsed the need for standard development by March 2014 can be found on our website (http://www.efcni.org/index.php?id=2017). These organisations are invited to be actively involved in the development process. Additional organisations can still join the project.
In the beginning, the standards will be published in English. We will try to make the standards available in other languages, too.
Our industry partners AbbVie, Philips Avent, Shire, and Nestlé Nutrition kindly support this project.
EFCNI works with a geographical definition of Europe. This means that participation in the project is not limited to EU member countries.
The planned publishing date is November 2017.