Patient and public involvement and engagement in genomic preterm birth research: shaping study delivery and materials in the PRESTIGE-PTB study

Background Preterm birth (PTB) disproportionately affects women from ethnic minority backgrounds, yet these communities remain underrepresented in genomic research. The PRESTIGE-PTB study uses whole genome sequencing to investigate genetic determinants of spontaneous PTB and embeds patient and public involvement and engagement (PPIE) to promote inclusivity, acceptability, and responsiveness to lived experience. Methods Monthly online PPIE meetings were conducted with three contributors from ethnically diverse backgrounds between December 2024 and September 2025. Activities included co-development of participant materials, discussion of recruitment challenges, and refinement of communication strategies. Meeting minutes and evaluation forms from contributors and researchers were analysed descriptively. Reporting was guided by the GRIPP2 short-form checklist. Results Nine PPIE meetings were held. Contributor feedback led to revisions of posters and social media materials, improved cultural sensitivity in recruitment communication, and targeted outreach through charities and community groups, contributing to increased self-referrals. Contributors reported increased knowledge, confidence, and sense of value, while researchers described enhanced awareness of inclusivity and patient experience. Limitations included late introduction of PPIE and restricted influence on foundational study documents. Conclusions Regular, well-supported PPIE enhanced study materials, communication, and inclusivity in genomic PTB research. Early involvement, broader diversity, and sustained funding are essential to maximise the impact of PPIE in future maternal and genomic research. Trial registration Not applicable.