Neonatal sepsis remains a leading cause of newborn mortality across Africa, requiring not only effective antibiotic treatments but also research that is grounded in the needs and realities of families. For Penta, meaningful patient and caregiver engagement is central to delivering inclusive and impactful research.
The SNIP-AFRICA project offers a strong example of this approach in practice. Through a series of multi-country workshops led by teams at Makerere University – John Hopkins University (MU-JHU) Research Collaboration in Uganda and Ifakara Health Institute in Tanzania, the project has brought together about 150 people including parents, community representatives, clinicians, midwives and researchers from across Africa and Europe.
A key outcome has been the recognition of parent support groups as a critical element of effective neonatal sepsis research. These groups create spaces for shared experience and open dialogue, strengthen relationships between families and researchers, and help build trust.
Importantly, stronger engagement translates into better outcomes for newborns by improving how families participate in and navigate clinical trials. Parent support groups, acting as a bridge between families and researchers, can guide families through study procedures, helping them understand trial processes and supporting informed participation. They can also facilitate communication between researchers and families, for example sharing by educational resources or relaying parent concerns.
This work shows that embedding patient voices is not an optional addition, but a foundation of high-quality research. For Penta and SNIP-AFRICA, strengthening patient engagement is necessary for ensuring the successful implementation of complex clinical trials, and for improving health outcomes for newborns with neonatal sepsis.