Information for participants
Everyone in the study can receive a COVID-19 vaccination when they are eligible to do so - if your healthcare provider asks questions about the study, you can show them this letter confirming this.
People who have received a COVID-19 vaccination can stay in the study - and it is extremely important that they do so, as long as they are willing. From the trials, we know that the vaccine is not 100% effective and we need to monitor how well it works in the real-world.
Thank you for your continued participation.
Tests in the study are done for research purposes only and are not part of the NHS community testing programmes. The Department of Health and Social Care confirm that the research tests done as part of the study should not be considered in any activity that is standardly reliant on results of a test done through the NHS testing programme, providing that participants do not have symptoms. Therefore, participants should not be excluded from any activity on the basis of pending research test results if they do not have symptoms, this includes COVID-19 vaccinations, going to schools or nurseries and going to work.
Please see this letter confirming this.
Please note we will never ask for your bank details, the vouchers will only ever be issued by email or in some cases by post.
From 28th September, results are no longer being sent back to GPs - you will get your results directly by letter (as explained in the most recent adult information sheet)
Getting your test results back
The COVID-19 Infection Survey is a research study, not a testing programme. We return test results to participants, but tests from the research study are lower priority than tests from the national testing programmes and clinical service. This is because our positivity rates are lower, because we are testing people in the community as part of the surveillance research study, rather than testing people with symptoms or who have had direct contact with cases. Our tests, which are mostly on people without COVID, cannot be prioritised over testing those with symptoms in clinical service, where the percentage positive is much higher and hence from which more positive individuals will be identified overall.
It is very important that anyone in the study who develops symptoms of COVID-19 follows the guidance on self-isolation relevant to where you live. Even if you have had a recent test done in this survey and have developed symptoms, do not wait for its results before self-isolating. Please follow the guidance on getting a test for your area, do not wait for the results from any test done in the survey.
In the research study, it takes a day to get the swab to the labs, then it can take 3-4 days to do the tests because we are behind the queue of all the symptomatic testing. Results are sent back every morning from the labs to the research study. Once results come back, they are matched to participants via their barcode and letters sent out. So it typically takes at least a week before people get their test results.
What happens if your nose and throat swab is positive?
If one of your nose and throat swabs tests positive, as soon as we receive it back from the labs we pass the result onto the national tracing programme (NHS Test and Trace in England, NHS Wales Test, Trace, Protect in Wales, the Test and Contact Tracing programme in Northern Ireland and the Test and Protect system in Scotland).
- They will then call you.
- This is very likely to be BEFORE you get this positive result back from the study. If you are currently having weekly follow-up, the call may even come before you get a negative or failed result back from your previous test because of the timelines above - please check the dates that are printed on all the result letters.
- Please engage fully with the national tracing programme and follow the advice provided e.g. on self-isolation
- In England, Test and Trace will be able to give you a code to upload your positive result to the NHS app.
It is very important to know that a lot of people who test positive for COVID-19 do not have any symptoms - at least half the people in our study who are positive do not report having any symptoms (Section 3). This does not mean the test is wrong. The test we use has a false-positive rate of under 0.005% (described in this study), meaning fewer than one in 20,000 people who are really negative will get a positive test result. People without symptoms can still pass the virus on, so it is very important to follow the advice from the tracing programme.
Testing positive repeatedly in the study
NEW UPDATE TO REGULATIONS IN ENGLAND
From Wednesday 2 December the self-isolation regulations changed in England - see here - these now exempt participants of ethically approved coronavirus research (like this study) from multiple periods of self-isolation if they have repeated positive swab tests within 90 days of their initial positive test.
If you test positive repeatedly in the survey and are contacted by the contact tracing program, providing that you have already completed one period of self-isolation and providing you have not developed any further symptoms, you should tell the contract tracing programme that you have already self-isolated.
The original regulations in England were developed for testing people with symptoms, and also assuming that people would clear the infection quite quickly without being tested again. As above, we know now that lots of people test positive without symptoms and also that people can carry on being positive for much longer than was thought originally. The experience of participants in our study has directly informed the change to guidance, led by our colleagues at the Department of Health and Social Care.
REGULATIONS IN WALES, NORTHERN IRELAND AND SCOTLAND
In Scotland, individuals in surveillance studies like this survey are exempt from multiple periods of self-isolation if they have repeated positive swab tests within 90 days of a previous positive (see the guidance from Health Protection Scotland here). In Northern Ireland and Wales, please contact local public health teams.
How your information is used
Please note that if you signed up to take part in the study before 21 July 2020 there has been a small change to the way in which information from participants in the COVID-19 Infection Survey is to be used by the ONS. The ONS intends to link data from the survey to other survey and administrative data sets it holds. This will be beneficial in providing more in-depth analysis, which in turn will enable us to better understand the impact and nature of COVID-19 and answer critical questions to assist public health authorities and policy makers in better responding to the pandemic in the months ahead. This analysis is not part of the Infection Survey itself. Such linkage will continue for as long as there is value for statistical research and analysis.
The ONS may provide access to this data to accredited researchers for accredited research purposes via accredited processing environments, where it is lawful and ethical to do so, and where the research is considered to be in the public good. It will not be possible to identify individuals from this data. Data will only be used for statistical research and analysis purposes and will not be shared with anyone else (other than access by accredited researchers).
What happens if YOU move house?
The survey is based on a representative sample of addresses and so if you move house, your participation in the survey will finish. We will use the data collected up to the time you leave the survey.