Silke Mader and her team work towards improving newborn health and in particular towards providing high-quality treatment and care to preterm infants, ill newborns and their families, resulting in lower short- and long-term health complications and a considerable reduction in healthcare costs. She leads a novel interdisciplinary European project including health professionals, parents, and representatives from the business and government sectors as well as other non-government organizations to develop and implement unprecedented high quality standards of care for newborn infants.
The New Idea
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.
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.
Silke Mader realized the need to reduce risks surrounding preterm birth on all levels – prevention, treatment and care in the hospital, and follow-up and continuing care. To accomplish this, she needed to harness the power of information, education, and cooperation to develop and implement a shared understanding of preterm infant care standards. That is why Silke’s work has three strategic pillars: (1) Connect and empower the diverse stakeholders with a special focus on national parent organisations to take an active role in improving standards of care for newborn infants, (2) increase the visibility and awareness of newborn health and particularly preterm birth and (3) strategically work towards the development and implementation of high quality standards for prevention, treatment and care, as well as follow-up and continuing care across the European Union and beyond.
When EFCNI was launched in 2008, Silke began to research and contacted about 20 parent organizations from different European countries – all of them associations of affected parents working independently and voluntarily on the issue. She invited them to a network meeting in Rome, Italy, the first of its kind. The goal was to foster an exchange of ideas and build an effective network, comparable to networks and professional societies that exist among health expert groups. The meeting served as the Launchpad for Silke’s vision to implement a World Prematurity Day. Initially met with some skepticism, World Prematurity Day is now officially supported internationally.
These first steps led to a regular exchange and a rising professionalization among parent organisations throughout Europe. Silke pays special attention to building a strong and constructive attitude among representatives of todays 40+ partner organisations. To do so, she provides training on issues such as communication between parents and healthcare representatives, fundraising methods or advocacy work. Through annual conferences, trainings, and language-adapted template kits, volunteer organisations are empowered to advocate professionally for improved healthcare for preterm infants within their countries. The network is already achieving concrete advancements in legislation affecting families of preterm infants and working to implement new standards. An example is the success of the Portuguese parent organisation XXS. This organisation was supported by Silke and her EFCNI team from its inception and participated in all annual parent organisations meetings. With support of EFCNI, XXS developed a national action plan to improve the situation of preterm babies in financially-troubled Portugal and was granted government funding for the C.A.R.E. interdisciplinary project. The project includes prevention campaigns, information and prematurity awareness, training for skill development of healthcare workers, the improvement of Neonatal Intensive Care Units (NICU), and other reform initiatives.
Simultaneous to the empowerment of parent organisations, Silke worked to bring the issue onto the European and international agenda. EFCNI published the EU Benchmarking Report “Too Little, Too Late” in 2010, one of the first reports to document the impact of prematurity across Europe. This report draws a compelling picture of the impact of preterm birth across 14 different European countries. It reveals a troubling lack of European-wide harmonized standards of care or coordinated national and European policy initiatives to improve the quality of care across Europe. The next milestone for Silke was the publication of “Caring for Tomorrow”, the EFCNI White Paper on Maternal and Newborn Health and Aftercare in 2011. In this report, healthcare professionals and parents representatives were asked to share their perspectives on the situation, on the challenges and to provide evidence-based recommendations in the field of pre-conception, maternal, newborn, follow-up, and continuing care. The report is officially supported by many European organisations and societies. An initial set of key recommendations for each field was developed as a result of this report.
In addition to the policy initiatives, Silke worked to mobilize the public through the European campaign “ene, mene, mini. One baby in ten is born premature. Worldwide.” Starting in 2011, 15,000 signatures were collected and handed over to the leadership of the European Parliament by April 2014. Under the motto “,” EFCNI offers a well-received, internationally-adaptable campaign for boosting awareness among member organisations and other institutions.
Since 2008, Silke and EFCNI have been able to work effectively at both the national and European levels, to raise awareness, change attitudes, and standardize practices. In 2011, following Silke Maders’ policy and outreach initiatives, the first informal cross country and cross party parliamentary group in the EU Parliament was formed to advocate for maternal and neonatal health and in particular for issues involving preterm birth. Silke works to link these delegates to parent organisations and experts in the respective countries in order to create strong national alliances and national level initiatives. For example, the “Battles for Babies” awareness campaign in Serbia was created in response to the disastrous state of infrastructure, treatment and care in the country. Galvanizing a coalition involving TV channels, private companies, and the advertising conglomerate Saatchi & Saatchi, they launched a campaign that raised 3 million Euros to drastically improve hospital care for newborns.
EFCNI’s outreach also includes tailored information for specific target groups. An example is the “healthy pregnancy” initiative being conducted in Germany in collaboration with 20 interdisciplinary authors who developed a comprehensive educational brochure for pregnant women. The brochures’ 2nd edition is out with 150,000 copies in print and is distributed for free to pregnant women across Germany by gynecologist offices and midwives.EFCNI’s work to date has laid the foundation for Silke Maders’ ultimate goal: the development of harmonized European standards of care for newborn health that will incorporate and expand the existing recommendations from the Benchmark Report and the White Paper. Silke intends to fundamentally change paradigms in legislation, healthcare practice, minds and behavior across Europe. The “Standards of Care for Newborn Health” project was kicked off in April 2014 after two years of preparation. Within the project, which is set to run for five years, 11 interdisciplinary working groups on specific subtopics are led by a team of renowned health specialists in their field and will develop comprehensive standards. A total of 51 organisations are so far involved in the process, further organisations will join in throughout the project. All have committed to a Code of Conduct outlining their support for the cause, especially the commitment to support its implementation.
These standards will guide how preterm babies and their parents are treated and cared for throughout their trajectory within the healthcare system. In preparation for the implementation of these standards, representatives from all expert groups for healthcare education are a part of the implementation process, along with the umbrella organisations of Europe’s’ largest hospital associations. The development and implementation of these standards is anticipated to require at least 5 to 10 years. To assist in the implementation, Silke wants to work on a certification process and on the reshaping of education and advanced training in healthcare.
The foundation EFCNI today works with 60 plus partner organisations around the globe. Its Trustee Board, as well as Parent and Scientific Advisory Boards actively involve prominent representatives from government, research and healthcare communities.
Silke Mader gave birth to prematurely born twins. Her daughter died soon after birth and her surviving son weighed only 500 grams. Upon giving birth, Silke had to deal with both the grief of losing a child and the fear that her son might not survive. She felt a lingering guilt, wondering if the preterm birth was somehow her fault. Silke felt isolated and her many questions were left unanswered. At that time parental support of any kind did not exist, neither were parents involved in the day-to-day care for their baby.
Silke, a trained kindergarten teacher, could not believe there was no one to turn to and decided to change the situation. She started with a self-help group for parents in Munich, created and distributed information flyers, and created a community for parents to turn to. Silke soon became chairwoman of the national self-help association for the care of preterm infants, which she led from 2003 to 2009. During this time she managed to implement the first guidelines for continuing care for preterm children in Germany, which today is a role model in Europe. Bolstered by strong supporters, Silke saw that the prevention, treatment and care for preterm infants and the support for their families needed to be dealt with at a European level – and she set out to start EFCNI.
Colleagues and supporters note her authentic and straightforward approach. Silke refuses to attend events or expert congresses if patient organisations are not invited as active contributors. One renowned healthcare expert described working with her: “And along comes this involved mother who gets experts, politicians and patients to work effectively. None of us have the time or distance to do so – she oversees the system and gave herself permission to guide us towards real large changes. We all follow.”