How do people feel about research studies using their personal data from government-held records?
How do members of the public feel about their personal data being used to invite them to take part in research?
The Early Life Cohort Feasibility Study (ELC-FS) found public support for using government-held birth records to invite families to join the study, an approach never used before in UK cohort studies, provided the process was clearly explained. This evidence, published in the International Journal of Population Data Science (IJPDS), enabled the study to successfully access these records and recruit a diverse range of families from across the UK, achieving a 49% response rate and recruiting 1,933 families. Feedback from parents participating in ELC-FS also showed the study’s approach was acceptable overall. These findings have paved the way for a larger, UK-wide birth cohort study that will recruit 30,000 families with children born in 2026.
Funded by the UKRI Economic and Social Research Council, ELC-FS invited thousands of families with a baby aged 9-10 months to take part in 2023/24. As the last UK-wide birth cohort study started over 20 years ago, the study team needed to understand how public attitudes to data use had changed, particularly regarding how families were selected and contacted.
ELC-FS used contact details from birth records to invite families to take part. This is because some groups are much more likely to voluntarily sign up to research than others, which could lead to a skewed picture of UK family life. This approach had never been done before, so it required careful planning and approval from data holders and ethics committees across the UK. Transparent communication with participants about how personal data would be used was also essential.
To inform this, the study team ran two public engagement projects. The first involved interviews with 59 parents of young children, and with administrative data experts. Both groups were largely supportive of contacting parents using birth records if the process was clearly explained. They were also asked for their views on linking participants’ survey answers with other records, such as participants’ health or education data. Two consent options were explored:
- 'add-on’ - (giving permission during the interview) and
- ‘embedded’ - (being informed and given the chance to withdraw permissions).
Both were found to be acceptable if clearly communicated, so both were tested in ELC-FS. Linkage consent rates were high for both approaches, but the embedded model had higher and more equal consent rates across participant groups.
The second project tested the letters and materials that would be sent to families about the study with 32 parents. Feedback helped the team improve clarity and reassurances about data use in the materials, some examples of which can be found in this published article.
Lead author, Alyce Raybould, summarised that “The research shows how public engagement helped build trust, improve transparency, and supported innovative use of administrative data in a new UK-wide study of children and families. The next stage is to recruit a new cohort of 30,000 families with a child born in 2026 and will continue in its commitment to improving transparency around data use through further dialogue with the public.”
Click here to read the full article
Alyce Raybould, Senior Research Fellow, Centre for Longitudinal Studies, University College London, UK