We deposit your de-identified survey responses with the UK Data Service, based at the University of Essex, and the UK Longitudinal Linkage Collaboration, based at the University of Bristol (with data securely hosted by Swansea University). Making the study data available through these central data stores makes it easier for scientists from different sectors, working in a wide variety of fields, to access and use the information in their research.
Researchers based within UCL, where the study is run from, may also be given access to the data via the highly secure UCL Data Safe Haven (DSH).
The UK Data Service is funded by the Economic and Social Research Council (ESRC) to meet the data needs of researchers, students and teachers from all sectors. The UK Data Service collection includes major UK government-sponsored surveys, cross-national surveys, longitudinal studies, UK census data, international aggregate data, business data, and qualitative data. We deposit de-identified data from all the studies that we run, including Next Steps.
Across the UK, thousands of people are taking part in longitudinal studies like Next Steps, which follow participants over time. At the Centre for Longitudinal Studies (CLS), we run four studies – the National Child Development Study, the 1970 British Cohort Study, Next Steps, and Child of the New Century (also known as the Millennium Cohort Study). There are many other studies in the UK, similar to these. Among others, these include, Avon Longitudinal Study of Parents and Children, Generation Scotland, National Survey of Health and Development, Southall and Brent Revisited, Twins UK, UK Biobank and Understanding Society.
Each study collects vital information which allows researchers to answer key questions about the factors which affect people’s experiences and circumstances throughout their lives.
The UK LLC brings together de-identified data from many of these studies including the four studies we run at CLS, together with linked administrative data, into a single database available to approved researchers for approved research projects. Combining the data from these studies together makes the data even more valuable, creating a resource which will significantly increase the potential for research. UK LLC was initially created as a research resource to support researchers doing priority research to help understand the impacts of the COVID-19 pandemic and develop new treatments. UK LLC has now received further funding from the Economic and Social Research Council and the Medical Research Council, to make linked study data available for any ethically approved research which is in the public benefit – not just research into COVID-19.
If you have given permission for your health records to be linked, then UK LLC has now linked your study data with NHS health data. Plans are also underway to link study data with education, employment, tax and benefits records for those of you who provided permission.
In order to securely link your administrative data to your survey responses, your personal details are provided to the UK LLC’s Trusted Third Parties – Digital Health and Care Wales (DHCW) and the Office for National Statistics (ONS). DHCW and ONS are not provided with the answers to your surveys. For more details see Adding other information and refer to the UK LLC privacy policy.
Access to your survey responses by staff at the data stores is limited to those who manage and prepare the data for access and to those who keep the system safe.
The data are de-identified at all times, and steps are taken to ensure confidentiality and data security. The data services have leading Information Security accreditation (ISO27001) and are regularly audited by IT professionals, the NHS and UK statistics agencies.
Legitimate researchers are able to apply to access the data under a strict licence agreement and required to use the data for legitimate purposes. Where your routine administrative records have been linked to your survey responses, additional measures are in place, including limiting access to researchers based in the UK and to researchers who need to demonstrate that they will be competent and safe users, that their project is in the public interest, is not run for profit making purposes, and will meet the requirements of CLS and the owners of the administrative data.
