Data privacy and protection

Following the transition to “Living with COVID-19" and after careful consideration, the COVID-19 and Respiratory Infections Survey formally ended on 28 June 2023.

Any information participants provided in response to this study will be legally protected and treated as confidential in line with the Code of Practice for Statistics. It will only be held for as long as it is being used for producing statistics.

Our lawful bases for processing information about participants are "a task in the public interest" and for "statistical purposes". The Office for National Statistics (ONS) is the controller of all the data collected, which will only be used to produce statistics and undertake public good research. The ONS is responsible for looking after participants' information and using it properly. If you want to know more about how the ONS is responsible for participants' data, please contact the Data Protection Officer by emailing DPO@statistics.gov.uk.

Study data may be shared with third party service providers. De-identified data may be provided to approved researchers.

Participants' data will be used to produce anonymous statistics that serve the public good. We will link information from participants in this study to other administrative or survey data sources, including but not limited to data collected as part of the COVID-19 Infection Survey (CIS). This includes linking participants' responses in the COVID-19 and Respiratory Infections Survey (CRIS) to their demographic information that was collected as part of the COVID-19 Infection Survey (CIS). The ONS will also link any other data participants have already agreed to us linking to their CIS data, such as data relating to previous vaccinations or previous COVID-19 tests. To do this, we will use their participant identification (ID). The reason for this is to be able to understand information from participants in the CRIS, in the context of their past responses, infections, or antibodies, to produce better statistics.

We will link data to health data acquired from the NHS, the UK Health Security Agency and equivalent national bodies in Wales, Northern Ireland, and Scotland, to check participants' health status, whether they have visited a hospital or a GP, or had a test for COVID-19. The reason for this is because it is not clear whether having self-reported COVID-19 or other respiratory infections, with or without symptoms, could make people more likely to get other long-term conditions like diabetes, heart disease, or dementia in the future. This will be done for data from January 2016 onwards.

Because the ONS asked people to complete the questionnaire every month in the CRIS, this made the study one of the best studies to understand more about respiratory infections. The reason for linking data back to January 2016 (four calendar years before the start of the COVID-19 pandemic) is to make sure the ONS accounts properly for conditions that people had before they joined the study, which was not asked as part of the study. This linkage would be done both during the study – for example, to find out the impact of self-reported COVID-19 or being vaccinated on how often people have had to go into hospital or visit their GP – and after people stop taking part in the study.

The ONS may give access to information to accredited processors and researchers for accredited research purposes, where data do not identify participants directly and where it is lawful and ethical to do so. When making this de-identified data available, the ONS may link the data obtained through this study with other survey and administrative data that we hold. Access will only be given to support valuable new research insights about UK society and the economy that are in the public good. 

The ONS has the statutory objective to promote and safeguard the production of official statistics that serve the public good. All our uses of data will comply with the UK Statistics Authority's ethical framework. The ONS will continue to hold the data collected through this study and link to other admin or survey data sources for as long as it remains useful for statistical research and production.

The Office for National Statistics (ONS) sometimes share selected information with our service providers to help us run our studies. We only share the personal details that are needed for the study, and they are not used by service providers for any other purpose.

In this study, we worked with another organisation that helps us get in touch. Our service provider for this was GOV.UK Notify. For GOV.UK Notify's Privacy notice, please visit their website.

Data protection regulation gives participants control over their personal data and how the data are used. Participants have the right to request access from any controller that holds their personal data, or to request they amend any wrong or inaccurate information they hold about them. Participants have the right to object to their personal data being processed.

Participants have the right, in some circumstances, to request any controller to:

• erase any personal data they may hold about them

• stop processing their personal data

• pass any information they hold about them to another controller

For more information on the rights participants hold and how to exercise them, please see our Data protection page.

If a participant wishes to exercise these rights, then please contact our Data Protection Officer via email at DPO@Statistics.gov.uk or via telephone on 0345 601 3034. Please provide details of your request and email or written address details. They will then be able to pass this over to the Data Protection team to action and respond.

The ONS takes our responsibility to keep our participants' personal information secure very seriously. As such, the ONS takes every reasonable precaution to ensure their information is protected from loss, theft, or misuse. These precautions include appropriate physical security of our offices, controlled access to computer systems, and use of secure, encrypted internet connections when collecting personal information.

Further information on what we use data for is available on our Data Strategy page.

Further information on the ethical framework and a full list of accredited processors are available on the UK Statistics Authority website.

Further information on how we provide access to data for research purposes is also available on the UK Statistics Authority website.

If you have a question about how the Office for National Statistics (ONS) processes participants' personal data or want to find out more about their rights under data protection legislation, please see our Data protection page.