PPPIEP

PPIE  

The Neonatal Medicine Research Group considers Patient, and Public Involvement and Engagement  (PPIE) at the heart of their work. We ensure patients, parents and the public are involved in all stages of our research. These range from identifying and prioritising research questions, designing and undertaking interventions, and disseminating and implementing results. We also invite public collaborators to be co-applicants on grant applications, and to co-author peer-reviewed journal papers with us. 

We collaborate with Bliss, the charity for babies born preterm or sick, the Adult Preemie Advocacy Network, Tommy’s Baby Charity, SANDS (Stillbirth and Neonatal Death Society), The Miracle Babies Foundation in Australia and NEC UK, which supports families who have experienced a serious gut condition called necrotising enterocolitis. We also consult with around 600 parent and patient members of the neoWONDER (Neonatal Whole Population Data Linkage) study that aims to improve the lifelong health and wellbeing of very preterm babies using linked routine data.   

National Institute for Health and Care Research Imperial Biomedical Research Centre Pregnancy and Prematurity theme: Pregnancy and Prematurity is one of 14 themes that receives funding from the National Institute of Health and Care Research Imperial Biomedical Research Centre. The theme includes studies targeting miscarriage, stillbirth, and preterm birth. The role of our community partners is to introduce our research to members of their wider communities, especially those who are less likely to be involved in research,  and provide oversight of our work by acting as a critical friend. Community partners are also members of the Theme Management Group. 

Examples of some other research to which our PPIE partners contribute are:   

National Neonatal Research Database (NNRD): This database contains routine information obtained from Electronic Patient Records for all babies admitted to a NHS neonatal unit in England, Wales, Scotland and the Isle of Man, unless their parents opted out. The information includes geographical details, records of treatments and care, and the results of their developmental check up at the age of two years. There is also a suite of electronic tools to examine NNRD data in depth. We have a number of PPIE groups contributing to the continuing development and use of the NNRD. These include a Core Group who are able to contribute more time and, , an Ancillary Group whom we are able to consult on an ad-hoc basis, and a Preterm Adult group who bring their own unique perspectives of growing up as a preterm person. Two PPIE members are part of the NNRD Steering Board as parent representatives.  

The WHEAT study-within-a-trial: WHEAT (WithHolding Enteral feeds Around Transfusion) is an international trial to find out whether feeding a baby during a blood transfusion affects the risk of developing necrotising enterocolitis. We have embedded an additional research question in the trial, to find out if providing parents with access to online resources improves the information obtained during the trial and reduces dropout rates. 

BASE (Bicarbonate for AcidosiS in very preterm babies):  This is a trial testing ways of treating metabolic acidosis, a build-up of acid in the bloodstream. At present, some neonatal units routinely give preterm babies sodium bicarbonate when they develop this condition while others do not, and which option is better is unclear. We have an established PPIE group who provides their comments and guidance on the study materials and recruitment strategies.  

eParental Insights is a pilot project that looks to include parent rated NICU experiences into the NNRD. PPIE members (parents of children who spent time in NICU) support this study by providing their feedback on the study procedures, data collection methods, and the way to recruit parent. This project also has a parent as co-applicant.