Title: neoWONDER: A Whole Population Data linkage approach to improving long-term health and wellbeing of preterm babies
Funder: Department of Health and Social Care

Abstract: Research questionCan linked datasets of routine information be used to determine the long-term impact of preterm birth and care interventions? BackgroundImproving the health and well-being of very preterm infants is a national priority. This requires information to evaluate the long-term impact of neonatal interventions and other factors post-discharge. However, obtaining this information is expensive and complex, with progressive attrition over time. I will address this problem by linking together routine data sources which exist separately. I will link an established source of data on all babies admitted to NHS neonatal units, the National Neonatal Research Database (NNRD), to other routine health, educational, and environmental datasets. I will do this for all 90,000 very preterm babies (born before 32 weeks) in England and Wales over a twelve-year period (2007-2018). Aims1. Involve patients, parents and other stakeholders to determine the acceptability of data linkage, and identify information from routine datasets that best describe long-term health and wellbeing 2. Describe the long-term physical, mental health and educational outcomes 3. Determine the impact of post-discharge exposures (environmental and socio-economic factors) on modifying later health and educational outcomes 4. Evaluate the impact of an exemplar intervention, mother's own breast milk, on the later health and educational outcomes MethodsResearch ethics and Confidential Advisory Group approvals will be sought prior to linking the NNRD to other datasets: Wales: SAIL (Secure Anonymised Information Linkage) England: Health (e.g. Hospital Episode Statistics), education (National Pupil Database), environmental, socio-economicAnalyses include quantitative and qualitative methods. Workstreams and Timelines for delivery1. Patients, parents and stakeholder involvement; months 0-92. Health and educational outcomes (Wales); months 0-30 3. Mental health outcomes (South London); months 0-30 4. Health outcomes and post-discharge exposures (England); months 10-46 5. Educational outcomes and post-discharge exposures (England); months 12-48 6. Mother's milk and outcomes (England and Wales); months 48-60 Anticipated impact 1. Preterm babies and parents Information on long-term outcomes will support counselling of families, decision-making, and inform future research Determining the scale of the problem and influencing factors may help inform public health and educational policies The linked dataset and developed statistical causal inference methods can be used to resolve more clinical uncertainties more efficiently to benefit patients Demonstrating feasibility will support the case to continue tracking outcomes across the life course for this and future cohorts.2. Other patient groups Proof of concept of data linkage has wider applications to patient groups with life-long complex needs e.g. children on the cystic fibrosis register3. Public and economy Linking existing datasets is a cost-efficient approach to evaluate the investment into neonatal services 4. Academics and organisations Researchers wishing to use the linked dataset and obtain long-term outcomes (clinical trialists, health economists, epidemiologists) Organisations interested in exemplar linkage studies e.g. Health Data Research UKDisseminationFindings will be shared with:Patients and public through information leaflets and animation videos disseminated to UK neonatal units, BLISS charity (newsletters, volunteers, website, events), social mediaProfessionals and academics through peer-reviewed publications, conference presentations, study website, social media

Lay abstract: AimTo improve the lifelong health and wellbeing of preterm babies by using routine data to evaluate the long-term impact of neonatal interventions. Background Worldwide, preterm birth is the biggest cause of death among children under five. In the United Kingdom each year, around 8,000 babies (2-3% of all births) are born before 32 weeks (more than 2 months early). They require specialised care in neonatal units and are at risk of life-long disability and health problems. In England, the societal cost to age 18 is around 2.5 billion. Improving the life-long health and wellbeing of preterm babies is a national priority. To do this, we need to monitor their progress 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 major obstacle is obtaining this information, which is very complex and expensive. As a result, we have no information about the progress of very preterm babies born during the last decade. I want to make it possible to obtain long-term information by linking together data that exist separately.Design and methods I will link an established database containing routine data from babies in NHS neonatal units, the National Neonatal Research Database, to other routine health and educational data. I will do this for all 90,000 very preterm babies born in England and Wales over a twelve-year period (2007-2018). 1. I will co-design this linkage with patients and parents to determine: What information from routine data should be used to describe their long-term health and wellbeing? For example, is having a statement of educational needs important? Is it acceptable to use identifiable data for linkage purposes without consent? Or if consent is preferable, how might this be obtained practically?2. I will link the NNRD to health, education and environmental data in England and Wales to determine: What are the long-term health and educational outcomes in very preterm babies? Does air pollution or other environmental and socio-economic factors influence these outcomes? What is the impact of mother's breast milk on later health and educational outcomes? Mother's breast milk is an example of one of the many interventions during neonatal care; although considered beneficial, its long-term benefits remain uncertain. ImpactThis is a more cost-efficient approach to evaluating the long-term impact of interventions. If shown to work, we can address many other uncertainties, and also continue to track outcomes into adulthood. Other patient groups may also benefit; for example term babies with brain injury at birth or children with life-long complex needs.Patient and Public InvolvementThis proposal has been developed with adults born preterm and parents of preterm children. Patients and parents will be involved in decisions about which information should be linked and some will be members of the Study Advisory Group to co-design the research. A wider group of professionals (including nurses, doctors, teachers, community), charities and organisations interested in linking routine data for public benefit (example Health Data Research UK) will also be involved. Dissemination Animation videos and leaflets, 'What is data linkage and how can it benefit you, your baby and other families?' and written summary research findings will be co-produced with patients and parents. These will be disseminated to families through UK neonatal units and the charity BLISS using their established communication channels (newsletters, social media, and volunteers). Findings will be shared with health professionals and academics through scientific publications, conference presentations, social media, and a study website. A report will be written for public service (health, education, environmental, social) providers, and policy makers.

Research activity codes: 2.2 FACTORS RELATING TO PHYSICAL ENVIRONMENT;2.3 PSYCHOLOGICAL, SOCIAL AND ECONOMIC FACTORS
Health categories: REPRODUCTIVE HEALTH AND CHILDBIRTH