1st PAB meeting with the ArtPlac consortium: January 2024
Background to Patient Advisory Boards (PAB)
Patients and their well-being are often the subject of studies and projects in the health- and life sciences. However, as a child and a patient, their voices, opinions, and needs often go largely unheard. For this reason, it is important to include representatives of the youngest patients in these scientific processes, to ensure that the interests of this group are considered and their needs met.
The significance of this direct involvement of patient representatives has become more and more recognised in international research and medical practice.
The overall structure and size of a PCAB varies greatly between projects, but often a shared characteristic is previous personal experience of the subject matter.
2nd PAB meeting with the ArtPlac consortium: December 2024
PAB in the ArtPlac project
The ArtPlac project aims to develop a device specifically for the life-saving care of very preterm and critically ill born infants, with one of the major objectives being the provision of Infant- and Family-Centered Developmental Care (IFCDC). IFCDC is a holistic model, which promotes family empowerment and encourages parents to be directly involved in their baby’s care. This helps to improve both parental and infant health outcomes and well-being.
The involvement of the patients’ interests is essential throughout the ArtPlac project duration and is supported by a Patient Advisory Board consisting of five parents.
All five of these patient representatives have previously had experience of caring for a preterm or critically ill newborn in their lives, be it through their own children or very close relatives.
Representative of the EU’s diversity, the ArtPlac PAB includes individuals from all over Europe, who have widely differing professional backgrounds. Their main tasks within the project are to review the on-going progress of all consortium partners and offer feedback and comments on project materials and device testing. The parents do not only give valuable input into existing topics and considerations but can provide unique insights into real-life situations: What it is like to live through these moments and how it affects family life and future planning.
These experiences and testimonials of parents are a source that cannot be replaced by studied facts or rational considerations, but they are essential in ensuring that the end product is a device that is suitable and appropriate for everyday life in the hospital.
The members of the ArtPlac PAB have so far taken part in three meetings with the project consortium, in which they have learned about the individual project teams, their respective area of expertise in the project, and how much progress has been made so far.
Additionally, they are in close contact with the Global Foundation for the Care of Newborn Infants (GFCNI), which is responsible for the management and involvement of the PAB within ArtPlac. Through this connection, additional tasks and requests have been fulfilled by some of the parent representatives, including the sharing of important considerations and references for ethical aspects of this new device, and providing feedback on illustrations and graphics by offering specific points for improvement.
3rd PAB meeting with smaller ArtPlac group, on the topic of skin-to-skin care: June 2025
GFCNI’s role in the PCAB
GFCNI is leading the involvement of and cooperation with patients and parents. The main responsibility is the establishment and subsequent management of the Patient Advisory Board, in order to ensure the voices of patients and their caregivers are heard and considered during development. GFCNI provides ethical considerations and includes a parent and patient-focused perspective during every step of the project.
We are grateful to all members of the ArtPlac PCAB for investing their time and allowing the ArtPlac project to learn and grow from their personal experiences. Many discussions are being greatly improved by including these valuable private perspectives and we are thankful for the important benefit of having these testimonials as part of our process.
If you want to learn more about the parents involved in the ArtPlac PCAB, please see these short profiles and visit the great causes that each of them supports in their fight for better newborn care:
Patient Advisory Board
Dr Sylvia Obermann
Family doctor, Epidemiologist
Sylvia was born at 30 weeks as an unexpected twin herself. She is a mother to two children born preterm: A girl born at 29 weeks after severe IUGR and an emergency C-section. This birth was followed by a 4 months NICU stay in Malta. A boy born at 36 weeks in 2019 in The Netherlands.
Sylvia is the scientific coordinator at Care4Neo.
Vilni Verner Holst Bloch
Senior Advisor at Statistics Norway, Department for Person and Social Statistics
Vilni is father to a daughter born at 26 weeks and a son born at 43 weeks.
He has previously acted as user and parent representative for multiple projects, including the Norwegian national newborn quality registry.
Vilni is a board member of the Norwegian parents’ organisation Prematurforeningen
Estela Coutinho
MSc in Business Administration, certified digital strategy and project manager
Estela is a mother to two children, a boy born extremely preterm at 26 weeks, and a girl born preterm at 34 weeks.
She is an advocate for Maternal and Newborn Health and engages in multiple advising positions for international organisations.
Estela is board member of the Portuguese preemie association XXS, which she co-founded in 2008.
Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union. Neither the European Union nor the granting authority can be held responsible for them.