UK Longitudinal Linkage Collaboration
NSHD is one of many UK longitudinal research studies contributing to the Longitudinal Health & Wellbeing National Core Study for COVID-19 research. This has been designed by the UK’s top scientists to allow longitudinal studies – such as NSHD - to fully contribute to the national research programme and policy development. To do this, many studies need to put their COVID-19 relevant data into a single secure research environment to build scale and numbers across diverse population groups, occupations and other factors associated with COVID-19 risk, and from all over the UK. It is also necessary to link these participants to their health and wellbeing, administrative and environmental records to follow changes in status (e.g. who has had COVID-19, who has been vaccinated during the pandemic and as we return to normal. This research programme looks at the big picture which includes COVID-19 itself, but also the impact that lockdown and other restrictions have had on wider health (such as mental health, or cancer care and other ongoing health needs), education and families. For those of you who have taken part in the ZOE Symptom Study (https://covid.joinzoe.com/data) it will also be useful to link to those records to get a detailed record of symptoms and the impact of COVID-19, this may help us understand outcomes such as Long COVID.
To achieve this the Longitudinal Health & Wellbeing National Core Study is establishing the UK Longitudinal Linkage Collaboration (UK LLC). This is a secure research server, run by the University of Bristol (Data Controller) and supported by the University of Swansea (Data Processor for the University of Bristol). NSHD will provide the UK LLC with de-identified copies of your data – including data collected during the pandemic, but also relevant data collected before the pandemic so we can look at how health and other factors have changed, To establish the linkage to health and wellbeing and other records we will provide a list of your personal identifiers only (e.g. name, NHS ID, address) to the NHS Wales Informatics Service (they will never see your study data). This NHS organisation will send identifiers to the groups conducting the linkages:
- The UK NHS authorities who share records with researchers (including NHS Digital in England, Public Health Scotland/eDRIS/National Records of Scotland in Scotland, SAIL databank in Wales, NHS Northern Ireland Business Development Organisation in NI);
- The UK statistical agencies (including the Office for National Statistics in England and Wales, eDRIS/National Records of Scotland in Scotland, Nothern Ireland Statistics & Research Agency in NI);
- The University of Leicester will receive address data only in order to link this to precise location and then map information about this place (such as air pollution, noise data, services and the amount of greenspace around the property).
The data is stored on secure servers controlled by the University of Bristol (the servers are located and run by the University of Swansea). The UK LLC will make available a full list of researchers using the UK LLC data and the purpose for this, which can be obtained by emailing firstname.lastname@example.org. The UK Data Protection Act 2018 provides individuals with rights over how their data are used. The UK LLC supports these rights.
NSHD remains the Data Controller for your data. At all times, we will determine whose records should be used in the UK LLC, which linkages can be established and which research teams can use your data and for which purposes. In this way, we make sure that all the principles of NSHD are upheld.