Patient Advisory Board
Involving Parent Representatives in UPRISE
Ensuring that the findings of the UPRISE project are visible, impactful, and effectively shared is essential for driving real change in healthcare and society. This will be achieved by:
Engaging key stakeholders across various sectors—including parent and patient representatives, healthcare professionals, researchers, and policymakers.
Facilitating pathways that help integrate new scientific evidence into policies and clinical guidelines.
The Role of the Parent Advisory Board (PAB)
A core priority of UPRISE is the active involvement of a Parent Advisory Board (PAB) to ensure that the voices and perspectives of affected families are reflected in research dissemination and outreach efforts. Their insights will help shape communication strategies, ensuring that information is accessible, relevant, and impactful for parents, healthcare professionals, and decision-makers.
As a consortium member of UPRISE, the European Foundation for the Care of Newborn Infants (EFCNI) plays a central role in coordinating this representation.
About GFCNI
At the Global Foundation for the Care of Newborn Infants (GFCNI), we work to improve newborn health by advocating for high-quality, accessible, and equitable care, long-term follow-up, and continuing care for both mother and infant in each region of the world. Our particular focus is on infants born too soon, too small, or too sick – those who need special medical care and hospitalization after birth. We represent the patient and parent voice in the global arena, transcending country borders and continents.
GFCNI is the first global organization and network to unite patients, families, healthcare professionals, medical staff, and scientists from different disciplines, fields, and countries – all with the joint goal of advancing the health and quality of care for newborns and their families across the globe. We envision a future in which every baby born receives the right care, at the right time, in the right place!
How the PAB Contributes to UPRISE
The Parent Advisory Board (PAB) will act as an independent advisory body to ensure that the experiences and needs of parents affected by preterm birth are considered throughout the research process. As part of UPRISE’s dissemination and stakeholder engagement strategy, feedback from the PAB will inform communication activities and maximise outreach.
Key Responsibilities of the PAB
Reviewing project materials (website content, reports, information materials) to ensure clarity, accessibility, and relevance.
Providing feedback on communication strategies to improve engagement with parents, patient groups, and healthcare professionals.
Participating in discussions on how research findings can be effectively integrated into public health policies and clinical guidelines.
Structure & Operations
Chaired by GFCNI, the PAB will consist of four representatives from parent organisations with personal experience of preterm birth.
Regular virtual meetings will be held throughout the project to ensure ongoing engagement and collaboration.
Confidentiality protocols will be in place, with all members signing terms of reference, including confidentiality agreements where necessary, to ensure responsible handling of sensitive information.
By embedding the patient and parent voice at the heart of its communication strategy, UPRISE aims to bridge the gap between research and real-world impact, ensuring that scientific discoveries translate into meaningful improvements in neonatal care and public health policies.