Developing a consumer- and clinician-led evidence-informed research agenda for public neonatal services

Research is a pillar of neonatal care, with millions of dollars invested towards improving outcomes for critically ill newborns. Traditionally, research programs have focused on primary research, rather than region-specific or family-focused needs, which adds to challenges for practice improvement or local translation. In contrast, research codesigned with families continues to emerge as a framework for individual and future programs, prioritising the voices of families and ex-neonates.

The objective of this study was to develop a collaborative, region-specific, consumer-centred research agenda for public Southeast Queensland neonatology services.

A modified James Lind Alliance research priority setting process was applied between June 2023 and August 2024 over six stages. Partnering with consumers, healthcare professionals and clinician researchers worked collaboratively to conduct online surveys, evidence-checks, and in-person workshops. The analysis was completed in Excel with results described descriptively.

A steering committee was formed (n = 11) including two previous parents, researchers, and healthcare professionals. The harvesting survey resulted in 215 priorities provided by 94 respondents. The 215 questions/statements were checked against study scope and evidence (n = 16 removed), aggregated into 20 themes, before being summarised for interim ranking (n = 47; of which 41 were primary research and six were translational or health service research). On the basis of ranking provided by 212 respondants, 29 questions/itmes were shortlisted for the consensus workshop. The final workshop was attended by 34 stakeholder representatives (11 consumers, nine nurses/midwives, seven allied health professionals, and seven medical officers). The top seven priority themes were as follows: (i) reduction of family stress and disconnection; (ii) optimisation of initial 72-h care; (iii) technology and innovation; (iv) feeding and growth strategies; (v) implementing and sustaining neurodevelopment/neuroprotective care; (vi) optimising respiratory therapy; and (vii) models for family-centred and culturally safe communication.

An innovative and compassionate consumer-led research agenda, specific to the health service region, was developed, strengthening partnerships between local families and professionals to improve care.