Launch of Preterm and Hospitalized Newborn Health Standard Set (NEO-SS)

Graphic/Flyer ©2020 ICHOM

The International Consortium for Health Outcomes Measurement (ICHOM) has just launched their Preterm and Hospitalized Newborn Health Standard Set which is now ready for implementation! We are thrilled and feel honoured that EFCNI could contribute to this great, outstanding project as Patient Advisor and NEO Working Group member. Health professionals, patient advisors, and recognised leaders from across Europe, Africa, the Americas, Asia and Australia have joined forces to establish and launch this global set of outcomes that reflect what matters most to the parents of preterm and hospitalized newborns – independent of treatment or diagnosis, from birth to 5 years of age.

Patient Advisor and NEO Working Group Member Silke Mader, European Foundation for the Care of Newborn Infants, Germany shares: “As a patient representative, but first and foremost as a mother of a son born preterm over 20 years ago, I very much appreciate that the ICHOM project took great care to engage with patients and parents from the very beginning. To develop standards of optimal care for hospitalised newborns requires the input and feedback from those who have experienced the immediate impact of preterm birth and the sometimes lifelong consequences that follow. For children born preterm and their parents, it is one thing to survive but quite another to thrive and be happy and healthy. Therefore, I am very pleased with the patient- and parent-centred perspective that has been used in this project. I really hope this will be an example to follow for future medical research projects – for the sake of both patients and professionals.”

We thank Andreas Flemmer, M.D. as the Working Group Chair with Esther Schouten, M.D. and Johanna Sterckermeier, M.D. as Research Fellows as well as their project team including Nick Sillett and Jessily P. Ramirez, Project Managers, and Christina Nielsen, Research Associate for their contribution for making this path leading project a success.

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