UK Longitudinal Linkage Collaboration
The TRACK-COVID study is participating in to further COVID-19 research. This initiative is the UK Longitudinal Linkage Collaboration (UK LLC) and is being led by the University of Bristol. We are asking to:
- share de- identified copies (without personal identifiers e.g. name or NHS ID) of your study data with the UK LLC.
- enable linkage to your health and administrative records (e.g. COVID-19 test results, education, furlough/employment status). To do this your identifiers (including NHS ID, date of birth, address and name where available) will be shared with the NHS Wales Informatics Service.
More information about the UK LLC is described below, including details of how to opt-out of your data being used in this research. If you opt-out of the UK LLC, you will still remain part of the TRACK-COVID study.
The UK LLC initiative is creating a research database containing data on millions of people from many UK studies including the TRACK-COVID study. The initiative has been set-up in response to the coronavirus pandemic to enable investigation into high priority COVID-19 research questions and to inform public health policy. The research database will be a safe place in which the data from these studies can be stored, organised and analysed by approved UK-based researchers. 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), education and families.
The TRACK-COVID study team 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 (e.g. as part of the [INTERVAL/COMPARE/STRIDES] Study), so that researchers can look at how health and health-related factors have changed.
It will be necessary to link participants to health and administrative records to follow changes in status (e.g. who has had COVID-19, who has been vaccinated, employment status). To achieve this link to health and wellbeing and administrative records, we will provide a list of your personal identifiers to the NHS Wales Informatics Service (they will never see your study data). This NHS organisation will send identifiers to the organisations who own and manage the data (such as NHS Digital for health data and the Office for National Statistics for administrative data) where they will match the identifiers to the data for people who are participating in the UK LLC study and provide the requested information to the UK LLC. The data provided will be de-identified. This means the UK LLC only contains data that has had participant identifier information removed (such as name, NHS ID and address).
Every collaborating study can see and control how its data are being used. The TRACK-COVID study remains the owner of the study data and has ultimate control of how your data is used.