Researchers tracking the experiences of the millennial generation can
now explore a wider range of health-related questions through the UK Data Service, thanks to a pioneering new agreement which enables secure onward sharing of NHS Digital data linked to the Next Steps survey from UCL Centre for Longitudinal Studies (CLS).
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.
NHS Digital and the UCL
Centre for Longitudinal Studies (CLS) which manages Next Steps, 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, accredited 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)