Become a parent representative on the NDAU steering committee

The National Neonatal Research Database

Help us use data to improve care for newborn babies 

We are looking for two parents or carers to work with neonatal doctors, nurses and researchers on a programme that supports the use of clinical data to improve neonatal care.  The programme is based at the Neonatal Data Analysis Unit (NDAU), which is a research unit at Chelsea and Westminster Hospital and Imperial College London. By taking part, you will represent the voice of parents/carers on the NDAU Steering Board.

The NDAU was set up to improve clinical care and outcomes for babies that need neonatal care.  The NDAU team developed and now oversees a large database called the National Neonatal Research Database (NNRD).  The NNRD contains medical information on all babies that are admitted to NHS neonatal units in England, Scotland, Wales and the Isle of Wight. Researchers, doctors, nurses, policy makers and government use NNRD data to improve neonatal care.  

Background

Neonatal means ‘newborn’. One in eight babies born in the UK will spend at least a few days in hospital in a neonatal unit which specialises in looking after babies who are born early, with a low weight or who have a medical condition that requires specialised treatment.

Some babies may have an infection and need antibiotics; others need breathing support or monitoring, or may be suffering from other medical conditions. The length of a baby’s stay may vary from days to weeks or months, depending on their needs.  When babies are admitted to for NHS neonatal care, doctors and nurses enter clinical information (for example whether they need any oxygen or medications) into a computerised electronic health record.  Data from these neonatal electronic health record systems are anonymised (so that no baby can be identified) and form a database called the National Neonatal Research Database (NNRD).  The NNRD is used in many different ways to improve neonatal care across the UK.  The Neonatal Data Analysis Unit (NDAU) oversees how data held in the NNRD are used. 

What is the NNRD used for?

Since its inception in 2007, NNRD data been used for many purposes including:

  • The National Neonatal Audit Programme which ensures that the standards of care that are provided in neonatal units in England and Wales are monitored and the Royal College of Paediatrics and Child Health.
  • Research, for example evaluating how neonatal services are organised and how important neonatal nursing numbers are for high quality neonatal care.
  • Government reports including the 2018 Department of Health report: Brain injury occurring during or soon after birth
  • The NHS Atlas of Variation that shows how NHS treatments and investigations vary across the country 

Who is involved on the NDAU Steering Board?

The NDAU is an academic unit based within both Imperial College London and Chelsea and Westminster NHS Foundation Trust. The NDAU is headed by Professor Neena Modi, Professor of Neonatal Medicine at Imperial College London. The NDAU Steering Board has two independent co-chairs, Professor Kate Costeloe and Professor Andrew Wilkinson. The NDAU team currently comprises about thirteen people including neonatal doctors, junior trainee doctors, nurses and representatives from the following organisations:

You will join the existing NDAU Steering Board and will work alongside neonatal doctors, nurses, researchers and representatives from Bliss (the national charity for babies born preterm and sick) and other national neonatal organisations such as the British Association of Perinatal Medicine. 

What we are looking for

Parents and carers with experience of a baby in neonatal care who:

  • Can confidently and objectively represent their views
  • Are willing to give about 4 days a year for 2 years
  • Understand the importance of maintaining confidentiality
  • Are good communicators and can work well in a team
  • Preferably do not have a health professional or research background (as we already have a number of health professionals/researchers involved) but are reasonably familiar with medical language and terminology (support will however be provided with this as needed) 

What is involved?

If selected, you will help by:

  • Helping steer the development of the NNRD
  • Reading and commenting on Steering Board documents
  • Being involved in communication activities
  • Attending Steering Board meetings and responding to correspondence by email

Four Steering Board meetings take place each year (roughly every three months) and generally last around three hours. They take place at Chelsea and Westminster Hospital. Lunch will be provided at meetings. The NDAU has no core funding so travel expenses (train, tube) are capped at £30per meeting.There is also opportunity to dial into meetings but we ask that at least 50% of attendances are in person.

At present the NDAU only includes data from neonatal services in England, Scotland, Wales and the Isle of Wight.  We anticipate that neonatal services in Northern Ireland will join in the near future, but pending this, we ask that applications are only made by people with experience of neonatal services in England, Scotland and Wales. 

Next steps

Please email ndau@imperial.ac.uk no later than 14th October 2019 to apply for this role. Please include the following information:

  • Full name
  • Email /Address/ Telephone number
  • Location of the neonatal unit(s) that your baby was admitted to (i.e. North-West, South-East, London)
  • If you have any disability related requirements
  • How you heard about this role

AND a short paragraph (of no more than 300 words) explaining:

  • Why you are interested in this role
  • Details of any relevant skills, knowledge and experience that you have which you believe would help you in the role

Thank you for your interest in this opportunity.