Problem: What problem is this project trying to address?
Preterm birth (defined as birth before 37 completed weeks of gestation) can lead to severe health risks for both, mothers and children. Worldwide, approximately one baby in ten is born preterm - 15 million babies each year. Approximately 500,000 children are born preterm in Europe alone. And their number is steadily increasing. According to the World Health Organization (WHO), over 1 million babies die annually around the world from preterm birth complications. Preterm birth is the leading cause of deaths among children under five years. Studies also show that the long-term health consequences of preterm birth result in higher healthcare costs.
The underlying problems are complex. First, there is a lack of information and education for parents and healthcare professionals. Many women are unaware of the causes and consequences of preterm birth. For example, in many European countries women are having babies later in life, unaware that they are elevating their risk for preterm birth. Many women still do not know enough about the factors that can lead to preterm birth (i.e. consuming alcohol, smoking, unhealthy lifestyle) or the potential health consequences for themselves and for their children. Parents of preterm babies are often overwhelmed and unable to cope with the new situation: Their life turns into a roller coaster with many ups and downs between hope and fear for the life of their baby. They are expected to take decisions with possible long-term consequences for their baby as well as for their family life and have to handle many mixed emotions and feelings. Support structures for parents within the health systems are inconsistent, often leaving the parents with little information, support. Attempts by parents to draw attention to deficiencies in the systems are not well-received by an already established health system that is not used to engaging constructively with patients. The services, availability and acceptance of self-help groups and patient organisations vary widely.
Even though preterm infants are Europe’s largest child patient group, there is an overall lack of awareness and prioritization of the issue within the public, the health sector and in the political sphere. This lack of awareness causes a deficiency in resources and effective methodology, such as a systematical collection of data in the field. There is currently little effort to create and harmonise standards for education or treatment and care, which today continue to vary tremendously between countries, regions and even hospitals.
The diversity of the healthcare providers and stakeholders has led to issues in communication and cooperation, which cause a lack of coordination among key players in the childcare process. This has in turn led to fragmented and partial solutions for the treatment and care of preterm infants, diminishing the chances for these babies to have the best start in life, and contributing to high healthcare costs in the long term. Studies, i.e. from UK, highlight the long term costs and effects of preterm birth. At the same time, different best cases show that improved standards in the field can drastically reduce the risks associated with preterm birth.
Solution: What is the proposed solution? Please be specific!
Worldwide, approximately one baby in ten is born preterm. In Europe, about half a million babies are born too early every year. Preterm birth is the leading cause of infant mortality and morbidity and causes enormous medical, psychological and economic consequences. However, even industrialized countries suffer from a lack of infrastructure needed to effectively prevent preterm birth and to take care for preterm and ill born babies from the moment of birth till adult life. Silke Mader intends to overcome these structural failings. Together with her team, she has systematically built a collaborative network of stakeholders who work together to make newborn health a priority with the intention of implementing and improving standards of care, first in Europe and later on hopefully also beyond.
Having worked in the health field on local, national, and international levels, Silke realized that for large-scale change to occur in the health system, three things needed to be achieved. First, affected parents needed to be involved in the day-to-day care quality improvements alongside both, healthcare professionals. Second, resources and players from disparate sectors of society – patients, healthcare experts, researchers, government and health policy specialists, as well as business – needed to be mobilized in order to create overarching solutions. And third, a cross-country dialogue involving both, bottom-up and top-down engagement needed to be sparked in order to achieve the level of legitimacy necessary for systemic reforms. Through her institution, the European Foundation for the Care of Newborn Infants (“EFCNI”), Silke successfully pursues all three objectives. Through a guided process, stakeholders from all across Europe actively work together, to create a mutually understood framework of child’s progression from preconception to adulthood. Silke includes business representatives in this process to foster their understanding of the problem and to galvanize their support (both financial and non-financial). She is bringing a new transparency to the field while boosting public awareness and policy reform through international campaigns and the empowerment of parent organizations.