1 in 8 babies born in the UK will need to be admitted for neonatal care. Having a baby in intensive care is something no parent is prepared for. Parents are scared and worried, they don’t always understand the medical details of what is happening and feel unable to help their vulnerable babies.

One way of empowering parents in this unfamiliar environment, and improving their experience of neonatal care is to regularly provide them with clinical information about their baby and involve them in their baby’s care. Doctors and nurses in all UK neonatal units already routinely record a summary of clinical information in a neonatal electronic patient record (EPR) on every baby, every night. We hypothesise that sharing these EPR data with parents leads to higher reported satisfaction and greater data completeness.

Better Use of Data to improve parent Satisfaction (BUDS): a neonatal improvement project aims to:

  1. Understand the information needs of parents of babies that require neonatal care.
  2. Co-design an intervention with parents that will deliver individualised clinical information to them daily and in a way they can understand.
  3. Pilot this intervention in a NHS neonatal unit and measure the impact on parent satisfaction and data completeness.

 In order to achieve this we will be talking with parents to understand:

  1. How they are given clinical information on neonatal units at the moment (process mapping).
  2. What they would like to know and how they would like that communicated to them (focus group work, one-to-one interviews).
  3. What is feasible to deliver and how (PDSA cycles).

We will explore the option of developing an app that automatically extracts information from EPR and delivers it to the parents’ phones. We will pilot this intervention on the neonatal unit at Chelsea and Westminster hospital and measure the impact on parent satisfaction and data completeness, with the aim of later rolling it out to more neonatal units.

The BUDS project is a collaboration between Imperial College London, Chelsea and Westminster Hospital NHS Foundation Trust, NIHR CLAHRC Northwest London under the Early Years theme, the national neonatal charity Bliss and a commercial partner Clevermed Ltd. The project was launched October 2016 and will be looking to recruit parents in early 2017.

For more information please go to www.neoepoch.com or contact Dr Susanna Sakonidou at s.sakonidou@doctors.org.uk