1. European Standards of Care for Newborn Health project

2. Why European Standards of Care for Newborn Health?
 Harmonised definitions or regulations for infrastructures, medical processes and care procedures, and capabilities of staff are usually lacking on a national level.

3. Differences between European countries
Infrastructure for high-risk pregnancies
Organisation of medical centres
Transport systems
Education of
healthcare
professionals
Follow-up and continuing care
Medical treatment
Health is country issue
Level of implementation
of infant- and family-centred care
Nutrition
NICU design

4. From theory… to practice
Development of European “reference“ standards
Project
Set up of the health system
Specific country situation
Level of detail in standard
National requirements for standards
Need translation before they can be implemented on the national level
„Health is a country issue in the European Union.“
Reference standards are not in a format as they could be directly adopted on the national level, difficult situation because in the EU and in Europe are so many different health systems, therefore the standards cannot be that specific that they can match all needs, this information has to be added again, regarding process, format and topic selection in your country
Implementation of standards needs to be on the national level

5. Why is this project so unique?
Initiated by patient (parent) representatives for patients
Parents are involved in every step of the development process
A true patient centred project
About 220 experts from more than 30 countries developed the standards
Supported by more than 150 professional healthcare societies and parent/patient organisations
Covers the complexity of neonatal care
Promotes the equitable and high levels of care

6. 120 51
An interdisciplinary, European collaboration involving more than about 220 people from more than 30 countries.

7. Working together All stakeholders support the development
actively participate in development process
endorse the final standards
Innovation: not only healthcare professionals but also parents and industry partners contribute to the project

8. Development process of the standards
36 members
220 authors
Approval by chairs
Peer review process
Chairs voted on every single standard separately
Now it‘s time to act!
Support by >150 organisations

9. European Standards of Care for Newborn Health Project
The European Standards of Care project for Newborn health has the aim to develop reference standards for a broad area of topics in newborn health, each icon represents a different topic and the respective Topic Expert group (working group of the project), we have a working group on Ethical decision-making & palliative care or Infant- & family-centred developmentally supportive care or NICU design, those are topics for which countries don’t necessarly have standards for; Topic Expert Group on medical care and clinical practice, here you can find the most guidance, here is a kind of tradition of writing things down and to give recommendations, even if it differs from country to country; For the Infant- & family-centred developmentally Supportive care it is very sparse;
what is also very special is that all those topics are with regard to newborn health, for example Education and training, the full name is Education & training of the multidisciplinary team working in neonatology  specific for that group, a topic where in the past were partly standards for the training of physicians or nurses but often it is not that there was an interdisciplinary approach looking at them, looking at the different competences covered, how they match and how they can complement each other, so that inter-professional training is also needed; tradition was more that specific groups works on something and produce something but without talking to each other here the whole range of topics, different professions and parent representatives are represented in all of those groups
No obligation to directly implement all 11 topics, depending if you already have standards and where are the biggest needs in each country, in some countries it might be difficult to make a standard on for example: Family accesss which prescribes the presence of the family in the unit; There can be systems or cultures where there are people who don‘t think that they would need a standard on it because the system they are in always worked very well and they don‘t see the point, views and culture is not ready to say okay we want to start with that topic, here it might be useful to start here with one of topic where you have more support and where you should have a standard but you don‘t have it yet, depends on how the system works, wether there is a committee that decides which topics will get a standard or whether you can have an influence on the topics that, whether you can put forward suggestions for a standard, if there is a committee that makes decicions and on what they issue standards then the most important point is to get connection to this committee, to get them understand your cause, to think strategically where do you have the most common ground to start, you probably want to start with a standard where they are also do have an interest in, what is the tradition in your country in setting standards and the current situation
If there are very urgent issues in the country at the moment and you come up with all the standards, people then would not take you as seriously as if you together with them identify the priorities and once you have build up the relationshio you can start work with them and bring things forward
Changing the mindset beforehand
Evidence-based standards:
Yes and no. There are references in the standards, but it is not strictly Evidence based like the EBP, Evidence based practice (professiones that work in respiartory health), use of GRADE system with a lot of literature reviews, our standards not, it would have need to much ressources, we hope that our experts use as much evidence as possible, but not a substitute for full evidence-based guidelines, for topics where there is evidence it is put in there but there are also topics where evidence is sparse
Aim
Development of reference standards for a broad area of topics in newborn health

10. TEG Birth & transfer Transfer of mothers/infants
Information and counselling about potential risk of preterm birth
Organisation of perinatal care
Please note: The following slides show in detail the different statements of the standards for every TEG.
You might want to choose one topic or one TEG, depending on the topic you are presenting. For example, if you are a speaker at a conference for NICU design, you might want to show only the standards on NICU design? Or you are talking about bonding? Then, perhaps the infant- and family-centred developmental care standards might be the right ones to present.

11. Topic Expert Group „Birth & transfer“
Chair Team
Dr Dietmar Schlembach, Germany Professor Umberto Simeoni, Switzerland
Members of the Topic Expert Group
Prof Annette Bernloehr, Germany
Dr Morten Breindahl, Sweden
Prof Irene Cetin, Italy
Dr Maurizio Gente, Italy
Dr Štefan Grosek, Slovenia
Dr Gilles Jourdain, France
Prof Franz Kainer, Germany
Dr Andrew Leslie, UK
Livia Nagy Bonnard, Switzerland
Asta Radzeviciene, Lithuania
Dr Nandiran Ratnavel, UK
Prof Rainer Rossi, Germany
Prof Matthias Roth-Kleiner, Switzerland
Prof Gerard A.H. Visser, The Netherlands

12. TEG Medical care & clinical practice
Covers every main medical condition of preterm and ill babies (BPD, ROP, NEC, asphyxia, sepsis, jaundice, vitamin K prophylaxis, brain injuries…)
You might want to choose one topic or one TEG, depending on the topic you are presenting. For example, if you are a speaker at a conference for NICU design, you might want to show only the standards on NICU design? Or you are talking about bonding? Then, perhaps the infant- and family-centred developmental care standards might be the right ones to present.

13. Topic Expert Group „Medical care & clinical practice“
Chair Team
Professor Luc Zimmermann, The Netherlands Professor Lena Hellström-Westas, Sweden Professor Giuseppe Buonocore, Italy
Members of the Topic Expert Group
Dr Kathryn Beardsall, UK
Prof Frank van Bel, The Netherlands
Dr James Boardman, UK
Dr Kajsa Bohlin, Sweden
Prof Maria Borszewska-Kornacka, Poland
Dr Jeroen Dudink, The Netherlands
Prof Mary Fewtrell, UK
Prof Andreas Flemmer, Germany
Prof Anne Greenough, UK
Prof Pierre Gressens, France
Prof Mikko Hallman, Finland
Dr Anna-Lena Hård, Sweden
Prof Ann Hellström, Sweden
Prof Egbert Herting, Germany
Prof Anton van Kaam, The Netherlands
Prof Claus Klingenberg, Norway
Prof Berthold Koletzko, Germany
Dr Rene Kornelisse, The Netherlands
Prof Boris Kramer, The Netherlands
Dr Gianluca Lista, Italy
Prof Rolf F. Maier, Germany
Dr Tuuli Metsvaht, Estonia
Prof Delphine Mitanchez, France
Dr Deirdre Murray, Ireland
Prof Eren Özek, Turkey
Dr Adelina Pellicer Martínez, Spain
Dr Serafina Perrone, Italy
Prof Christian F. Poets, Germany
Prof Heike Rabe, UK
Prof Irwin Reiss, The Netherlands
Prof Mario Rüdiger, Germany
Prof Elie Saliba, France
Prof Ola Didrik Saugstad, Norway
Prof Andreas Stahl, Germany
Dr Michael Steidl, Germany
Dr Martin Stocker, Switzerland
Dr David Sweet, UK
Prof Marianne Thoresen, UK
Prof Win Tin, UK
Dr Justyna Tołłoczko, Poland
Dr Daniele Trevisanuto, Italy
Prof Máximo Vento Torres, Spain
Prof Henkjan Verkade, The Netherlands
Dr Eduardo Villamor, The Netherlands

14. TEG Care procedures Taking blood samples Mouth care Nappy change
Positioning support
Feeding tubes
Support of breastfeeding
Skin protection
Weighing
Activities of daily living
Management of temperature and humidity
Respect of sleep
Comfort to minimise stress and pain
 Involvement of parents as much as possible
You might want to choose one topic or one TEG, depending on the topic you are presenting. For example, if you are a speaker at a conference for NICU design, you might want to show only the standards on NICU design? Or you are talking about bonding? Then, perhaps the infant- and family-centred developmental care standards might be the right ones to present.

15. Topic Expert Group „Care procedures“
Chair Team
Monique Oude Reimer-van Kilsdonk, The Netherlands Odile Frauenfelder, The Netherlands
Members of the Topic Expert Group
Johann Binter, Austria
Dr Fátima Camba, Spain
Monica Ceccatelli, Italy
Dorottya Gross, Hungary
Ingrid Hankes-Drielsma, The Netherlands
Eva Jørgensen, Denmark
Anna Kalbér, Germany
Thomas Kühn, Germany
Marianne van Leeuwen, The Netherlands
Dr Maria López Maestro, Spain
Elsa Silva, Portugal
Xenia Xenofontos, Cyprus

16. TEG Infant- & family-centred developmental care
Parents as primary caregiver
Continuous access throughout the 24 hours
Fostering early bonding through early contact
Skin-to-skin contact
Case management plan for each newborn infant
Parents receive care taking socioeconomic, mental health and spiritual needs into account
HCPs receive counselling in communicating with parents
Training on infant- and family-centred developmental care is ensured
Managed acoustic environment
Sensory environment
You might want to choose one topic or one TEG, depending on the topic you are presenting. For example, if you are a speaker at a conference for NICU design, you might want to show only the standards on NICU design? Or you are talking about bonding? Then, perhaps the infant- and family-centred developmental care standards might be the right ones to present.

17. Topic Expert Group „Infant- & family-centred developmental care“
Chair Team
Dr Björn Westrup, Sweden Professor Pierre Kuhn, France
Members of the Topic Expert Group
Dr Sari Ahlqvist-Björkroth, Finland
Natascia Bertoncelli, Italy
Dr Nils Bergman, Sweden
Prof Zack Boukydis, Hungary (†)
Sylvia Caballero, Spain
Dr Charlotte Casper, France
Mandy Daly, Ireland
George Damhuis, The Netherlands
Dr Manuela Filippa, Italy
Paula Guerra, Portugal
Prof Petra Hüppi, Switzerland
Dr Kai König, Switzerland
Birgitte Lenes-Ekeberg, Norway
Siri Lilliesköld, Sweden
Dr Rosario Montirosso, Italy
Dr Carmen Pallás Alonso, Spain
Dr Milica Rankovic-Janevski, Serbia
Prof Jacques Sizun, France
Dr Kari Slinning, Norway
Dr Inga Warren, UK

18. TEG NICU design
Facilitation of parental presence and optimal working environment
Facilitation of closeness and skin-to-skin care
Promotion of the family as primary care giver
You might want to choose one topic or one TEG, depending on the topic you are presenting. For example, if you are a speaker at a conference for NICU design, you might want to show only the standards on NICU design? Or you are talking about bonding? Then, perhaps the infant- and family-centred developmental care standards might be the right ones to present.

19. Topic Expert Group „NICU design“
Chair Team
Dr Atle Moen, Norway Dr Boubou Hallberg, Sweden
Members of the Topic Expert Group
Prof Sidarto Bambang Oetomo, The Netherlands
Delphine Druart, Belgium
Katarina Eglin, Germany
Prof Uwe Ewald, Sweden
Prof Fabrizio Ferrari, Italy
Prof Peter Fröst, Sweden
Teresa Garzuly-Rieser, Austria
Dr Erna Hattinger-Jürgenssen, Austria
Silke Mader, Germany
Dr Tomasz Makaruk, Poland
Dr Thilo Mohns, The Netherlands
Prof Jacques Sizun, France
Prof Robert White, USA

20. TEG Nutrition Guidelines on nutritional care Parenteral nutrition
Preterm formula
Early enteral feeding
Growth monitoring and assessment
Parental knowledge about feeding
Early nutrition with human milk
Supplements
Donor milk
Breast feeding
You might want to choose one topic or one TEG, depending on the topic you are presenting. For example, if you are a speaker at a conference for NICU design, you might want to show only the standards on NICU design? Or you are talking about bonding? Then, perhaps the infant- and family-centred developmental care standards might be the right ones to present.

21. Topic Expert Group „Nutrition“
Chair Team
Professor Berthold Koletzko, Germany Professor Mary Fewtrell, UK
Members of the Topic Expert Group
Prof Magnus Domellöf, Sweden
Prof Nicholas Embleton, UK
Prof Hans van Goudoever, The Netherlands
Dr Darius Gruszfeld, Poland
Dr Susanne Herber-Jonat, Germany
Prof Alexandre Lapillonne, France
Alison McNulty, UK
Dr Peter Szitanyi, Czech Republic

22. TEG Ethical decision making & palliative care
All relevant information are shared
Rights of infants, parents and families are respected
Shared decision-making on withholding or withdrawing life support
Interdisciplinary neonatal palliative care is applied
You might want to choose one topic or one TEG, depending on the topic you are presenting. For example, if you are a speaker at a conference for NICU design, you might want to show only the standards on NICU design? Or you are talking about bonding? Then, perhaps the infant- and family-centred developmental care standards might be the right ones to present.

23. Topic Expert Group „Ethical decision making & palliative care“
Chair Team
Professor Jos Latour, UK Professor Gorm Greisen, Denmark
Members of the Topic Expert Group
Elsa Afonso, Spain/UK
Prof Hans-Ulrich Bucher, Switzerland
Dr Laurence Caeymaex, France
Dr Marina Cuttini, Italy
Prof Nicholas Embleton, UK
Dr Milivoj Novak, Croatia
Dr Daniel Nuzum, Ireland
Prof Jochen Peters, Germany
Karl Rombo, Sweden
Yannic Verhaest, Belgium
Dr Daniel Wood, UK

24. TEG Follow-up & continuing care
Neurological status, motor development
Behaviour, emotional and attention problems
Comprehensive discharge management
Communication, speech, and language development
Peer and sibling relationships
Respiratory health
Cognitive assessment
Comprehensive care after discharge
Hearing screening
School readiness
Risk of recurrence
Visual assessment
Preventive responsive parenting support
Cardiometabolic risk factors
Parental mental health
You might want to choose one topic or one TEG, depending on the topic you are presenting. For example, if you are a speaker at a conference for NICU design, you might want to show only the standards on NICU design? Or you are talking about bonding? Then, perhaps the infant- and family-centred developmental care standards might be the right ones to present.

25. Topic Expert Group „Follow-up & continuing care“
Chair Team
Professor Dieter Wolke, UK/Germany Dr Aleid van Wassenaer-Leemhuis, The Netherlands
Members of the Topic Expert Group
Prof Laura Bosch, Spain
Dr Christiaan Geldof, The Netherlands
Prof Mijna Hadders-Algra, The Netherlands
Prof Christoph Härtel, Germany
Prof Egbert Herting, Germany
Dr Bregje Houtzager, The Netherlands
Dr Britta Hüning, Germany
Dr Shelley Hymel, Canada
Dr Julia Jäkel, USA/Germany
Prof Mark Johnson, UK
Prof Samantha Johnson, UK
Prof Eero Kajantie, Finland
Dr Anne van Kempen, The Netherlands
Dr Karen Koldewijn, The Netherlands
Prof Liisa Lehtonen, Finland
Prof Els Ortibus, Belgium
Dr Anne-Marie Oudesluys-Murphy, The Netherlands
Dr Vilhelmiina Parikka, Finland
Dr Veronique Pierrat, France
Dr Federico Prefumo, Italy
Prof Alessandra Sansavini, Italy
Dr Gert van Steenbrugge, The Netherlands
Dr Irma van Straaten, The Netherlands
Dr Jacqueline UM Termote, The Netherlands
Prof Tracy Vaillancourt, Canada
Mónica Virchez Figueroa, Spain
Dr Brigitte Vollmer, UK
Dr Marie-Jeanne Wolf-Vereecken, The Netherlands

26. TEG Patient safety & hygiene practice
Hand hygiene
Personal hygiene
Environmental hygiene
Central venous catheters
Nurse staffing levels
Safe use of equipment
Care bundles for NEC
Vascular access
Patient safety and quality improvement
Ventilator associated pneumonia
Medication errors
Multidrug-resistant bacteria
Monitoring of physiological functions
You might want to choose one topic or one TEG, depending on the topic you are presenting. For example, if you are a speaker at a conference for NICU design, you might want to show only the standards on NICU design? Or you are talking about bonding? Then, perhaps the infant- and family-centred developmental care standards might be the right ones to present.

27. Topic Expert Group „Patient safety & hygiene practice“
Chair Team
Professor Pierre Tissières, France Dr Onno Helder, The Netherlands Members of the Topic Expert Group
Dr Susana Ares Segura, Spain
Dr Alessandro Borghesi, Italy
Maria Josep Cabañas Poy, Spain
Prof Daniele De Luca, France
Dr Cécile Dubois, France
Prof Christoph Fusch, Germany
Estrella Gargallo, Spain
Dr Eric Giannoni, Switzerland
Prof Christoph Härtel, Germany
Dr Jan Janota, Czech Republic
Dr Ulrik Lausten-Thomsen, France
Dr Nolwenn Le Saché, France
Silke Mader, Germany
Dr Paolo Manzoni, Italy
Dr Josep Perapoch, Spain
Prof Christian F. Poets, Germany
Roland van Rens, The Netherlands
Prof Rainer Rossi, Germany
Dr Heleen van der Sijs, The Netherlands
Dr Cynthia van der Starre, The Netherlands
Nicole Thiele, Germany
Dr Tobias Trips, Germany
Lucie Žáčková, Czech Republic

28. TEG Data collection & documentation
Quality information is available
Indicators comply with published standards
You might want to choose one topic or one TEG, depending on the topic you are presenting. For example, if you are a speaker at a conference for NICU design, you might want to show only the standards on NICU design? Or you are talking about bonding? Then, perhaps the infant- and family-centred developmental care standards might be the right ones to present.

29. Topic Expert Group „Data collection & documentation“
Chair Team
Professor Gérard Bréart, France Dr Nicholas Lack, Germany
Members of the Topic Expert Group
Prof Mika Gissler, Finland
Prof Wolfgang Göpel, Germany
Prof Dominique Haumont, Belgium
Dr Ashna Hindori-Mohangoo, The Netherlands
Vilni Verner Holst Bloch, Norway
Prof Helmut Hummler, Germany
Dr Begoña Loureiro Gonzalez, Spain
Dr Miklós Szabó, Hungary
Dr Liis Toome, Estonia
Dr Eleni Vavouraki, Greece
Dr Jennifer Zeitlin, France

30. TEG Education & training of the multidisciplinary team working in neonatology
Simulation training
Continuing professional development
Evidence-based care
Competency based training for doctors and nurses
Parents receive training programme
Resuscitation training
Interprofessional education
You might want to choose one topic or one TEG, depending on the topic you are presenting. For example, if you are a speaker at a conference for NICU design, you might want to show only the standards on NICU design? Or you are talking about bonding? Then, perhaps the infant- and family-centred developmental care standards might be the right ones to present.

31. Topic Expert Group „Education & training of the multidisciplinary team working in “
Chair Team
Professor Linda Johnston, Ireland/Canada Professor Charles C. Roehr, UK/Germany Dr Agnes van den Hoogen, The Netherlands Dr Morten Breindahl, Sweden Members of the Topic Expert Group
Charlotte Bouvard, France
Dr Marina Boykova, Russia/USA
Prof Karl Heinz Brisch, Germany
Prof Duygu Gözen, Turkey
Prof Moshe Hod, Israel
Thomas Kühn, Germany
Dr Trudi Mannix, Australia
Marni Panas, Canada
Dr Julia Petty, UK
Dr Mirjam Schuler Barazzoni, Switzerland
Natascia Simeone, Italy
Dr Dalia Stoniene, Lithuania
Dr Inge Tency, Belgium
Nicole Thiele, Germany
Dr Inga Warren, UK

32. Call to Action for Newborn Health in Europe
A central document of the European Standards of Care for Newborn Health project is the “Call to Action for Newborn Health in Europe”. It is directed at various stakeholders and consists of 11 plus 3 demands – one for each of the eleven topics plus three general demands. Policy makers, hospital administrators, insurers, professional societies, patient associations, and industry are called upon to work together to pave the way for the implementation of the standards. The demands show which overall aspects need attention in order to improve newborn healthcare across Europe.

33. Call to Action – How it can be used?

34. Call to Action – How it can be used?

35. What has been achieved so far?
Development of 96 standards together with 220 experts from more than 30 countries
Support of 120* international and national healthcare professional societies
*Status: September 2019

36. What has been achieved so far?
Support of 51* parent organisations
*Status: September 2019

37. Supporting industry partners
Thanks to Dräger for supporting the project from 2013 till 2015.
Thanks to Shire for supporting the project from 2014 till 2018.
Their role: Participants at the Chair Committee meetings as silent observers, without voting rights, and no product related information sharing.
We thank our industry partners for supporting the project.

38. What has been achieved so far?
Target group and media-effective launch of the standards in Brussels – November 2018
European Parliament
Afternoon session
Bavarian representation in Brussels
Evening event

39. What has been achieved so far?
Publications and awards
Infant journal “Combining forces for preterm infants” (2016)
Editorial in THE LANCET “The unfinished agenda of preterm birth” (2016)
Awarded “Land of ideas” (2017)
Editorial in THE LANCET Child & Adolescent Health (2019)
Several national publications
The project has been mentioned in the Infant journal where the project is described in the context of combining forces in In the same year a Lancet editorial referred to the ESCNH project, when they were referring to the unfinished agenda of preterm birth.
In parallel to the launch, THE LANCET Child & Adolescent Health published a whole editorial on the standards.

40. Outlook and implementation strategy
More publications are to come
Review and extension of existing standards (Life cycle)
Development of measurement tools for outcome measures together with ICHOM in collaboration with Ludwig-Maximilians-University Munich
Implementation research: what impact will the standards implementation have?
Development of a self assessment
Toolkit: Launch at jENS congress in Maastricht
EFCNI Academy: Education modules in cooperation with professional societies and universities (pilot: „How to build up a human milk bank?“)
EFCNI Fellowship programme: education modules for parent representatives
With the launch of the standards in Brussels in November 2018, the project is not finished but continues with the implementation process. In the upcoming years, EFCNI will support healthcare professional societies, parent organisations, individual institutions, and organisations in bringing the standards into practice in Europe and hopefully in the future even beyond.
For a sustainable change of newborn health practices and structures in line with the new standards, various steps are undertaken to support and accelerate their implementation.

43. European Standards of Care for Newborn Health project in a nutshell
Aim:
Development of standards for the key topics in neonatal health in the context of an interdisciplinary European project
Focus:
Preterm and ill newborn infants
Method:
Work in topic-specific expert groups; about 220 high-level experts of different professions, parent representatives and selected industry specialists from more than 30 countries developed 96 standards
Over 170 international supporting organisations
Standard development period:
2013 – 2018
Special feature:
Active collaboration of different stakeholders
Next steps:
National implementation of the standards
With the launch of the standards in Brussels in November 2018, the project is not finished but continues with the implementation process. In the upcoming years, EFCNI will support healthcare professional societies, parent organisations, individual institutions, and organisations in bringing the standards into practice in Europe and hopefully in the future even beyond.
For a sustainable change of newborn health practices and structures in line with the new standards, various steps are undertaken to support and accelerate their implementation.
Project website: