NHS administrative data linked to Next Steps now available to researchers via UK Data Service

Researchers tracking the experiences of the millennial generation can now explore a wider range of health-related questions, thanks to a pioneering new agreement which enables secure onward sharing of NHS Digital data linked to Next Steps via the UK Data Service.

This is the first time that data from NHS Digital linked to a survey have been made available to the research community through the UK Data Service. Bespoke access arrangements, including enhanced data minimisation, have been put in place to allow secure onward sharing via the UK Data Service Secure Lab and to enable the data to be widely used by accredited researchers.

The health data, which have been linked to individual cohort members’ survey records, include information about hospital admissions, outpatient appointments, and A&E attendance, collectively known as Hospital Episode Statistics (HES). The datasets, which cover the period 1998-2017, include information about diagnosis, maternity care, mental health, types of therapies and treatment length and other clinical details.

Next Steps is a longitudinal cohort study which follows around 16,000 people in England born in 1989-90, collecting information about different aspects of their lives.

The UCL Centre for Longitudinal Studies (CLS), which manages Next Steps, and NHS Digital adhered to strict data security protocols to protect cohort members’ identities when linking the two sources of data. NHS data were successfully matched to the records of over 4,500 Next Steps participants, who gave their consent for this linkage at the age 25 survey.

Dr Lisa Calderwood, Director of Next Steps, said: “I’m delighted that researchers are able to access these linked health datasets for Next Steps via the UK Data Service. This is a really exciting new development for the longitudinal research community. I’m pleased that by working closely with NHS Digital we have been able to share this important and valuable linked data.

“Researchers will be able to analyse information about when, why and how people have accessed hospital care alongside the wealth of information we’ve captured about their lives through the years. This will help us answer many important research questions about the way health varies among different people and how health interacts with different facets of our lives.”

Cohort members’ survey data and the new linked health datasets are de-identified and can be accessed by registered researchers under a secure access licence through the UK Data Service website.

This latest development is part of a wider programme of data linkage work underway at CLS, home to three other cohort studies as well as Next Steps: the 1958 National Child Development Study (NCDS), the 1970 British Cohort Study (BCS70), and the Millennium Cohort Study. Linked health datasets for NCDS and BCS70 are expected to be released later in the autumn. For all three studies, CLS is also intending to refresh the linkage to include post-2017 health data soon.

The Next Steps study data have previously been enhanced with linked data from cohort members’ education records, including GCSE and A-level exam results.

How to access the data

The linked data are available via the UK Data Service’s secure access system, the Secure Lab. Information about how users can apply for access to these data can be found on the UK Data Service website.

The datasets are included in the UK Data Service catalogue as: Next Steps: Linked Health Administrative Datasets (Hospital Episode Statistics), England, 1998-2017: Secure Access (SN 8681)

Find out more

More information on the linked data datasets is available in the user guide, available from the CLS website and the UK Data Service website.

Notes

1. CLS securely transferred personal details (such as the cohort member’s name, sex, date of birth and address) when working with NHS Digital to link the health data to the survey data. No other information about the person was sent, or any of their answers to the surveys. NHS Digital only used these details to identify the person in their systems and to send CLS their health records. Once the correct information was identified, these personal data were destroyed. All linked data are made available to researchers under a secure access licence. Names, addresses, National Insurance and/or NHS numbers, are never disclosed.
2. Highly confidential datasets managed by the UK Data Service are classified as controlled data, which are not available under standard UK Data Service access arrangements. Users applying for controlled data have additional conditions of access, including the completion of special forms and attending a training course. Once approval is granted, datasets are available to view on the UK Data Service’s secure system, the Secure Lab. Data accessed in this way cannot be downloaded. Once researchers and their projects are approved, they can analyse the data remotely from their organisational desktop, or by using the UK Data Service’s Safe Room. They provide access to statistical and office software to make remote analysis and collaboration secure and convenient.