Help and Support

The study aims to further our understanding of what differences exist between those who have had COVID-19 and those that haven’t, by exploring what symptoms these groups have experienced since the start of the pandemic. By identifying the differences we will also be able to see who is most at risk of developing ongoing ill health and how best to treat it and care for those affected.

The survey will contain a mix of multiple-choice and free text questions that will cover: 1.Your current health status 2.Any recent symptoms, illness and COVID-19 tests 3.Impacts of your health and wellbeing on your day to day life 4.Underlying health conditions 5.You and your sociodemographic background (e.g. age, gender, ethnic group) 6.Plus, further questions for people who have had COVID-19 and/or Long COVID exploring any symptoms related to COVID-19 and experiences of any care or support received. At the end of the survey, you will be invited to do an online assessment to better understand how your cognitive function has been affected by the pandemic. The assessment will take 25-30 minutes to complete. This online test will assess your cognitive ability, including reasoning, working memory, attention, and emotion processing abilities. On completing the assessment, you can choose to view a summary report of your test scores relative to all other people who have undertaken the test. You may be invited to complete a follow-up survey(s) 12/18 months later, but you can choose to say no.

Yes, you can withdraw from the study at any time without giving reasons. You will have to inform the study team of your wish by phone, email or letter (details in this leaflet). We will then send you a Withdrawal from Study Form which you have to sign and send back to the research team at Imperial College. You can stop being part of the study at any time, without giving a reason, but we will keep information about you that we already have. We need to manage your records in specific ways for the research to be reliable. This means that we won’t be able to let you see or change the data we hold about you.

REACT Health and Wellbeing survey is part of an extension study to the REal-time Assessment of Community Transmission (REACT) Programme. The main aim of this extension study is to better understand what causes some people to experience ongoing symptoms and ill health after having COVID-19 (commonly described as Long COVID), regardless of how severe the original infection was, whilst others recover quickly. Through a variety of approaches, this study will explore the role that people’s health, social setting, demographics and environmental exposures (e.g. air pollution) plays in the development and duration of Long COVID. Such insight could improve patient care and support the development of better treatments. This aspect of the study is focused on exploring the health and wellbeing experiences of the public since the start of the COVID-19 pandemic.

To protect your interests, all research at Imperial College London is reviewed by an independent group of people called a Research Ethics Committee. This study has been reviewed and granted approval by the South Central Berkshire B Research Ethics Committee.

The results of this study may be shared in many different ways, such as being published in medical journals, presented at meetings of scientists and reported to both Imperial College, London and the Health Research Authority who oversee and review how research takes place in England. No personally identifiable information about you will be made available outside of the study team.

Your survey data (and cognitive assessment data if you take part in this aspect) will be held on secure servers at Imperial College London, linked to your earlier data collected during the REACT study, and given a unique study code so that your identity remains confidential. If you have consented to health data linkage, Imperial College London will also use information from your medical records held by NHS England and other UK public health bodies for this research project. This information will be linked by your NHS number. Investigators will use this information to monitor the long term health status of participants from this study. Unless they really need to know who you are, they will not be able to see your name or contact details. Your data will have a code number instead. The number of people who access this information will be kept to a minimum. We will keep all information about you safe and secure. Once we have finished the study, we will keep some of the data so we can check the results. We will write our reports in a way that no-one can work out that you took part in the study. Imperial College and other research institutions both academic and commercial may continue to carry out research using the de-identified data collected during the study. The results of any research that is published, whether by Imperial College or anyone else, will never identify you. See ‘Do you share my information with others’ to learn more. From time to time we may invite you to other research studies that you might be interested in participating in. Even if you receive invitations to future studies, there is no obligation to take part and you can drop out at any time. The information you share with us as part of this study will only be used for the purpose of health and care research or to contact you about future opportunities to participate in research. It will not be used to make decisions about your healthcare or future services available to you, such as insurance.

Your name, address, email will be kept separate from your study data and only linkable by your unique study code. This is in case the Imperial College study team need to contact you about research that your data has been used in. Your contact details will never be passed to another organisation without your permission and will not be visible to the investigators performing the analysis. The results of any research that is published, whether by Imperial College or anyone else, will never identify you. See p6 ‘Do you share my information with others’ to learn more.

So that the maximum information can be obtained from your participation in this study we may make the deidentified data available to other researchers. It is important that researchers understand as broadly as possible the factors concerning your health now, and in the future to identify as accurately as possible what puts people at greater risk of developing COVID-19, experiencing severe illness or suffering from ongoing ill health. We therefore require your consent for Imperial College London to link data (such as your GP health records) held by NHS England and other UK public health bodies to the REACT study data. This will provide information on the long term health status of the participants. An example of the use of this information would be to enable the monitoring of the longer term effects of COVID-19 on health. You can withdraw this consent at any point. Researchers in the UK and overseas who wish to access the data from this study and/or to contact participants about future research will have to apply to a Data Access Committee composed of at least three of the study investigators and at least one public representative.

If you are harmed by taking part in this research project, there are no special compensation arrangements. If you are harmed due to someone’s negligence, then you may have grounds for a legal action. Regardless of this, if you wish to complain, or have any concerns about any aspect of the way you have been treated during the course of this study then you should immediately inform the Principal Investigator Professor Paul Elliott at react.covid@imperial.ac.uk. The normal National Health Service complaints mechanisms are also available to you. If you are still not satisfied with the response, you may contact the Imperial College Research Governance and Integrity Team at rgitcoordinator@imperial.ac.uk.

Please make sure what you have entered the same as the web link we sent you. If it still does not work, try to open the web link in a different browser (e.g. Microsoft Edge instead of Google Chrome). Alternatively, please contact the researcher and we will be able to help you.

Previously we have found that some people who had COVID-19 struggle more with certain types of cognitive task even some years after they have recovered from their illness. A key question is whether this relationship diminishes with time, e.g., do we see some signs of recovery of cognitive abilities. We also are interested in studying whether there is a relationship to wellbeing (anxiety, depression, sleep, fatigue) and any relationship to everyday life, e.g., return to work etc.

Do not worry, you should be able to the assessment by clicking on the same web link we sent you and continue the assessment from the point you reached.

No, sessions do not time out, however please do try to complete the task as fast and accurately as you can.

The term cognition refers to the set of psychological process that enable people to perform complicated or novel tasks. When assessing cognitive function, we measure things like how long a person can focus on a task without making mistakes, how much information they hold in memory, and whether they solve logical problems.

If you are having trouble taking the cognitive function assessment, then you can write to us for help and advice.

It is your performance that we are trying to assess. If you are having trouble accessing the assessment, then you can ask for help at that point. However, you should not ask for help when undertaking the tests that comprise the assessment.

It is important that you take the cognitive function assessment yourself without help as we are trying to assess how well you perform the tests.

If you think that you performed a cognitive test incorrectly then you can email us to let us know.

The assessment might stop part way through if, for example, your internet connection is briefly interrupted. If this has happened, then you can click refresh in your browser or use the same link to navigate back into the assessment website. The software will start from where it left off, so you will not have to retake all of the tests. This will also work from a different machine to the one that you started the assessment on.

The assessment software is designed to run on most modern internet browsers and devices. If the assessment would not run, try to update your browser version, switch to a different browser or try a different machine.

When you reach the end of the assessment you will have the option of seeing how well you performed relative to other people who have undertaken the assessment. If you would like to see your results, then you should type your age when requested. A page will then be displayed showing your results relative to other people who are the same age. If you are retaking the assessment, then you will also be shown how your scores have changed across time.

You will see your results when you have completed the assessment.

If you have trouble viewing the results, then make sure that you have entered your age where requested. If you already have entered your age, then try using your link and code from a different machine or browser, this should take you directly to the results page. If this still does not work, then please email to let us know.

Our assessment is designed to be a population research tool. It cannot be used to diagnose cognitive problems or conditions in individuals. If you achieved lower scores than you hoped, then this can be for a number of reasons. For example, it may be that you were tired or fatigued at the time of assessment and therefore had trouble concentrating.

You cannot retake the cognitive function assessment straight away. However, we are intending to recontact people in the future so that we can see how their performance changes across time.

The breathlessness question is asked independently of the selected symptoms. Please choose the first option, “I only get breathless with strenuous exercise,” if you do not experience breathlessness.

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The cognitive tasks have been thoroughly tested and are safe for people with epilepsy. There are no known cases of it having triggered an epileptic fit. However, if you feel uncomfortable in using it then please do not continue with the tests.

You can switch to using a different device at any time. Your responses are recorded and when you log in from a different device they will start from where you had progressed to.

You can take a break and return later. Please use your login details or link to resume from where you left off.