Using your records for COVID-19 research

As a Children of the 90s study participant, you have played a vital role in tackling COVID-19 by completing the COVID-19 questionnaires. These questionnaires aim to understand how many people may have had COVID-19 and explore the full impact of lockdown on your health and wellbeing. Research findings from the questionnaires are already informing the Government’s SAGE expert group who advise on UK COVID-19 strategies and Public Health England.

As well as using your questionnaire responses, Children of the 90s are connecting to routine health data from official records - known as data linkage - to help study COVID-19. This is a secure and efficient way that data collected on participants can be used to make a difference – and at the heart of how Children of the 90s can help. For example, linked health records can be used to understand how COVID-19 may have affected how people have accessed NHS services.

As a participant in Children of the 90s, we have already let you know about how health records will be linked to Children of the 90s data and used in research for a range of projects for ten years now. We wanted to tell you about some of the ways your linked records are helping our COVID-19 research and to remind you that you can opt-out of this if you do not want your records used in this way.

Linking data in this way has been really useful in previous research projects for both physical and mental health and we are now using the same approach for COVID-19 research. As with all our studies, researchers only see 'de-identified data' (with your personal information removed) and all research we do is governed by the Data Protection Act (2018). If you have previously opted out of data linkage, your data has not been used in this way.

For our COVID-19 research we are using data from the following sources: (1) a new nationwide NHS COVID-19 database, (2) local NHS data from the Better Care South-West Partnership, and (3) the COVID-19 Symptom Study App and (4) Public Health England data on COVID-19 test results and hospital admissions. More information about how we link your Children of the 90s  data with this type of information for both COVID-19 and other research projects can be found here.

Below are answers to frequently asked questions about the data linkage processes for COVID-19 research:

 

What if I change my mind about taking part in data linkage or any other aspect of Children of the 90s?

As with previous data linkage projects, you have the right to opt-out of your records being linked to Children of the 90s for the COVID-19 research project. If you want to opt-out of COVID-19 research data linkage or to check if you have opted-out of data linkage in the past then please let us know by emailing info@childrenofthe90s.ac.uk. We would be very happy to answer any questions about this.

What if I have a question about this project not discussed here?

We’re happy to answer any questions relating to the project, just contact us at info@childrenofthe90s.ac.uk

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