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Early-Life Cohort Feasibility Study (ELC-FS): survey methodology phase
Safe People
Organisation name
University College London
Organisation sector
Academic Institute
Applicant name(s)
Prof Lisa Calderwood
Funders/ Sponsors
Economic and Social Research Council (ESRC) – Project Reference ES/V016814/1
DEA accredited researcher?
Yes
Safe Projects
Project ID
E101
Lay summary
Research studies of mothers and their babies are really important to help improve our understanding of how children grow and develop as they are raised the UK. The Early Life Cohort Feasibility Study (ELC-FS) is a new research study which will test whether it is possible to invite mothers who had babies in Northern Ireland during 2023 to take part in a much larger UK-wide research study, which is due to start in 2026. It is vital that mothers living here have an opportunity to take part in this new study because researchers and policymakers will use evidence generated from this study to help make decisions about how best to support families living here in Northern Ireland, now and into the future. The ELC-FS is currently underway. A group of mothers (~600 women) who have recently given birth (during June-July 2023) have been given an opportunity to take part in a survey about their family’s life and the health and development of their new baby. The ELC-FS study team were previously given permission to use basic contact information from mothers’ maternity records (i.e., name, address, and month/year of birth) to send selected women a letter to invite them to take part in the research study. Participation in the research study is entirely voluntary. This interview stage of the ELC-FS will be completed by the end of summer 2024. It is not possible to interview all women who gave birth during June-July 2023. Not all of the women who were selected to take part in the ELC-FS study will decide to do so; this is entirely their choice. In order for the findings from the ELC-FS study to be useful for understanding family life and development in childhood across all of Northern Ireland, the research team need to know some more information about all the women who gave birth during June-July 2023 as well as those who were selected to take part, regardless of whether they chose to accept or decline the invitation to get involved. This application requests access to selected data from maternity records for all women who gave birth during June-July 2023, with a flag on their record to indicate (i) whether they were invited to take part in the ELC-FS or not and (ii) whether they accepted the invitation to be involved in the study or not. This data is referred to as ‘de-identified’ which means that the study team are not requesting access to any information that will identify these women. Access to the following data is requested only: birth weight, birth type (singleton/multiple), ethnicity baby, ethnicity mother, previous births for mother, gestational age baby, country of birth of mother, month and year of birth for baby and mother, and sex of baby.
Public benefit statement
Birth cohort studies, such as the ELC-FS, are designed carefully to produce high-quality data that can be used to generate a robust scientific evidence base which can be used by clinicians and policymakers alike to help make informed decisions about how best to treat and support growing families. The ELC-FS is unique in that it is the first UK-wide birth cohort study in over 25 years; the most recent birth cohort in Northern Ireland was the Millennium Cohort Study (MCS), the participants of which are now in young adulthood. Whilst recognising the value of the MCS, the babies recruited into this study are now approximately 20 years old. In our negotiations with the Department of Health in Northern Ireland (who commissioned the study here), there was broad and clear recognition of the superiority of data produced from birth cohort studies compared to other study designs, and of the value of the MCS data for influencing government public health, education, and social policy here over recent years. The DoH acknowledged that there is no current, comprehensive, nationally-representative data resource available in NI with respect to the health and wellbeing of modern families raising young children. It was also recognised that there is a strong case for public benefit for the ELC-FS, and that there is a clear pathway from this research to policy for the promotion of public health and to promote and protect the health and well-being of Northern Ireland population. The availability of the ELC-FS data for NI would provide valid and reliable data as to how families of young children in NI are living their lives today, meaning that this longitudinal data could be used to monitor and assess the impact of any national-level policy changes introduced by the NI Executive going forwards. The recently established NI Executive have intentions for new policies to be enacted which hold specific relevance to the ELC-FS, as follows: • In 2020, The Executive’s ‘New Deal, New Approach’ document indicated an intention to publish a Childcare Strategy and to identify resources to deliver extended, affordable and high-quality provision of early education and care initiatives for families with children aged 3-4 years [1]. • The Expert Panel on Educational Underachievement in NI [2] directed that efforts are need to “redirect the focus to early years” to achieve “a seamless journey from pregnancy to pre-school, school and beyond, where every child is provided with the appropriate level of support needed in a timely and appropriate manner in order to realise their potential. Parents and families will also be supported in understanding the development stages of their child, especially in relation to the early language and motor skills required to give every child greater equality of opportunity and in so doing, facilitating their ability to start school better prepared to learn.” • The Children and Young Person’s Strategy (2020-2030) highlighted how “it is important that data and research about children and young people is shared and used to inform policy development. Furthermore, there are areas of children and young people’s lives where the availability of more relevant and robust data would facilitate more informed policy decisions. We need to promote an appropriate data development agenda that will support future decision making in relation to all relevant strategies, policies and programmes. [3](p.20).” For the ELC-FS to be of value, however, it is essential that our team demonstrates comprehensively that our sampling approaches and fieldwork procedures have secured a sample of mothers and their babies who are representative of all families living in Northern Ireland. This is the reason for this application to be able to conduct this important methodological work so that the ELC-FS study data can be available and used as will be an invaluable national-level evidence base which can be used to both inform the development of, and to monitor the medium-to-long term impact of, new government strategies. References 1. NI Executive (2020). New Decade, New Deal Approach. 2020-01-08_a_new_decade__a_new_approach.pdf (publishing.service.gov.uk). 2. Department of Education. (2021). Expert panel on educational underachievement in Northern Ireland. A fair start: Final report and action plan. A Fair Start (education-ni.gov.uk). 3. Department of Education. (2020). Children and Young People’s Strategy 2020-2030. Working together to improve the well-being of children and young people, and to achieve positive, long-lasting outcomes. final-execuitve-children-and-young-people's-strategy-2020-2030 (education-ni.gov.uk).
Other approval committees
Latest approval date
21/06/2024
Safe Data
Dataset(s) name
NIMATS (Northern Ireland Maternity System)
Safe Setting
Access type
TRE