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European Foundation for the Care of Newborn Infants

Prof. Dieter Wolke

Professor Dieter Wolke

Professor of Developmental Psychology and Individual Difference, Department of Psychology and Warwick Medical School


Preterm birth is the leading cause of infant mortality and treatment costs in the first years of life account for a third of the total child health budget. For the last 35 years I have been investigating the effect of being born very preterm (VP; before 32 weeks gestation) or extremely preterm (EP; <28 weeks gestation) in several longitudinal studies in Germany, Finland and the UK. These studies generated some of the first findings in the world of how VP/EP birth is associated with adult functioning (e.g. cognitive, mental health), life chances (employment, partnering, having offspring) and quality of life. The longitudinal data allowed identification of the childhood factors that may foreshadow or protect adverse long term outcomes.

What prompted you to engage with this policy/project?

VP/EP birth requires often months of neonatal hospitalisation and is very stressful for the infants and their parents. After initial survival, the major question of parents and health care providers is: how will these children fair in their life? Our dissemination in scientific journals, press releases and presentations to expert conferences and parenting organisations drew increasing attention. How should we follow-up VP/EP to support these children and their parents? Our research had clear pointers how this may be done.

Where did you hear about the opportunity to engage with policy, and who did you contact?

I was approached by the European Foundation for the Care of Newborn Infants (EFCNI), a network of parent and patient organisations to join their Scientific Advisory Board. This led to the idea to produce European standards of care for newborn by 11 interdisciplinary topic expert groups (220 professionals from 30 countries). I was asked to chair the Standards Committee on Follow-up & Continuing Care in 2013. The Standards were launched in 2018 in the European Parliament and have received endorsement from 120 professional and 50 parent organisations. Since then I have worked with the International Consortium for Health Outcomes Measurement (ICHOM) to devise standards of Preterm and Hospitalized Newborn Health that can be applied worldwide to assess quality of care. In 2019, I was elected to the Chair Committee of (Global Alliance for Newborn Care) to campaign for better care of newborns worldwide.

What support did you receive, and from whom?

The many hundreds of hours engaged in impact were done as voluntary work. An issue was that the time had to be found during evenings and weekends. However, recently, this impact work is properly recognised in work-load models within the university and departments which will make it easier for researchers to engage without sacrificing work-life balance. The most valuable forms of support I received have been the many comments, emails and letters from adults born preterm and parents who are grateful to have access and see improvements in care. The EFCNI and other parent organisations and their fundraising provided the networking and administrative support to make the standards development possible.

How does policy engagement impact the rest of your work?

It is highly personally rewarding and had a substantial effect on my research. Firstly, most funders require a demonstration of how the work can be impactful - we now know the routes it can take. Secondly, we need to involve those we investigate for consultation and co-creation of research and ask what really matters to them? - we now have the contacts to do this. Thirdly, the inclusion of EFCNI, a parent organisation, as partner for dissemination further helped to win a €9.8 Million grant from Horizon 2020: the RECAP-Preterm (Research on European Children and Adults born Preterm) project. Fourthly, the network of experts has led to many multi-country collaborations. This has contributed to my research output, receipt of an Honorary doctorate from the Ruhr University Bochum and me being a Highly Cited researcher cross discipline since 2017.

What advice would you give to other academics when engaging with policy and policymakers?

There is not one shoe that fits all.

In my case, difficult and well executed research and scientific publications came first. The research will be recognised if you disseminate widely and it matters to people.

It's important to communicate in terms that lay people will understand.

Go, speak to and meet those groups of people that you are researching - in my case, expert and parent organisations were hungry for scientific evidence. Talking with them opened a network that includes policy makers.

Make use of every opportunity for grants and funding.

University impact grants are now routinely available, and I would advise all researchers to consider applying for them.

Do not compromise on science – only endorse what has scientific evidence or state if is not yet known.

I learned what basic evidence could be highly relevant for translation into services or support.

Find out more about Professor Wolke's work