In the last 12 years (2007-2018) in the UK, around 90,000 babies were born very premature (before 32 weeks). These children have an increased chance of requiring later life health, educational and social support.
As neonatologists, parents and patients, we want to make sure that babies born premature lead healthy and fulfilling lives as they grow up into children and adults. To do this, we need to track the progress of these children over a long time and find out what neonatal care and interventions (like feeding or breathing support) or factors after hospital discharge (like social or environmental) make a difference. However, the lack of joined up data has meant that we have no information on the progress of very preterm babies born in the last decade.
We will link a national resource, the National Neonatal Research Database (NNRD) to other population-level health, education, and environmental data. (Figure 1). This neonatal database holds detailed information about all babies admitted to neonatal units across England and Wales. Bringing together the data may help us identify neonatal care and interventions that result in better outcomes.
At the end of neoWONDER, we should be able to answer:
Working together with parents, patients and health professionals
Through focus groups, national survey, and interviews, we will find out what information from routine data are important to describe long-term health and wellbeing. We will also explore views on data linkage without consent and develop information resources to communicate these findings widely.
We are inviting parents and adults born preterm to get involved. We want to find out what you think about data linkage, and what information about the future you want to know about your child/yourself.
1. SMALL FOCUS GROUPS TO HELP CO-DESIGN THE RESEARCH
What will I do? Help design a survey to find out what information (available from existing datasets) are important to patients and parents. This survey will be disseminated widely.
When? October or November 2020.
How long? 1-2 hours virtually. You will be remunerated for your time.
2. SURVEYS TO TELL US WHAT YOU THINK
What will I do? Complete a paper/on-line survey to tell us your thoughts about data linkage and information you would like to find out about long-term outcomes.
When? November or December 2020.
How long? This short survey should take around 15 minutes to complete. There will be a chance to let us know if you wish to take part in one-to-one interviews.
3. INTERVIEWS TO TELL US WHAT YOU THINK
What will I do? You will have taken part in the survey, and be invited for a one-to-one virtual interview.
When? November or December 2020
How long? 1 hour. You will be remunerated for your time.