Here are some answers to common questions about the COVIDENCE UK Study.
What is the COVIDENCE UK Study?
The COVIDENCE UK Study was developed in response to the outbreak of coronavirus disease (COVID-19). COVID-19 is a virus that can affect your lungs and airways and presents a major threat to human health.
Currently, the risk factors, adverse outcomes, impacts on mental and economic wellbeing and the natural history of COVID-19 in the UK population are largely unknown. The COVIDENCE UK Study will collect data from volunteers around the UK to answer scientific questions surrounding COVID-19.
By participating, you'll be taking part in innovative research aimed at improving the lives of everyone affected by COVID-19.
Am I eligible to take part?
You can take part if you are aged 16 years or older and you live in the UK.
How will my survey data be used?
The data you give us will be used to:
- advance understanding of risk factors for coronavirus disease among UK adults
- find out how quickly people recover from coronavirus disease and whether there are any long-term complications of this illness
- evaluate the impact of coronavirus disease on the physical, mental and economic wellbeing of the UK population
- establish a platform for future research on coronavirus disease in the UK.
Don’t we already know what the risk factors for coronavirus infection are?
We know that people with certain medical conditions (eg heart disease, lung disease, diabetes and high blood pressure) seem to be at increased risk. However, we don’t know why. Is it simply because people with these conditions tend to be older? Is it something to do with the underlying condition itself? Could particular medications affect the risk? Or are there any lifestyle factors such as smoking or different dietary patterns which tend to go along with some of these conditions?
By collecting very detailed information about your medical history and lifestyle, we hope to answer these, and many more questions – and this will give us a much better understanding of why some people are more susceptible to coronavirus infection than others.
Ultimately, this knowledge will help us to reduce this risk – for example by altering the way we manage these underlying conditions, or by providing specific advice on lifestyle changes that boost resistance to infection.
I have had/think I have already had COVID-19 – can I still take part?
Yes, you can still take part in the COVIDENCE UK Study even if you have had symptoms of COVID-19 or tested positive for the virus or antibodies. In fact, information from people who have already had coronavirus infection will be particularly valuable, as this will make our analysis of any risk factors more powerful.
How is my information kept confidential?
Keeping your information secure is our highest priority. The COVIDENCE UK Study complies with multiple regulations and policies to ensure that data is protected and biological samples are stored correctly.
Storage and work on personal data or biological data will always be in accordance with the current ethical guidelines, and the conditions of the consent you have provided. In the event that ethical guidelines are modified, the project will be further evaluated for ethical approval.
Personal data (eg contact details and linked medical data) will be stored on secure servers owned by Qualtrics, Queen Mary University of London and King’s College London. All data will be used in an anonymised linked format, with personal information accessible only to the recruitment team and clinical staff who have DBS (Disclosure and Barring Service) clearance and are bound to confidentiality by their University or NHS contract.
The EU General Data Protection Regulation (GDPR) is an EU Regulation which was put in place to ensure the protection of all EU citizens’ data privacy. It also gives people the right to access any information held about them.
All data use is strictly within the terms of the Data Protection Act 2018.
Will commercial companies be given access to my data?
We aim to support all types of researchers in their efforts to combat coronavirus disease. We don’t yet know whether companies will apply to do research in COVIDENCE UK, but each and every company that does will be closely examined by the study team.
Only those companies with ethical aims – and whose research the study team judges to be well justified – will be approved to use COVIDENCE UK data, with all data anonymised.
None of your personal information will be passed to external researchers, organisations or companies without your consent. If they request to recontact COVIDENCE UK participants, we will ask you first if you want to be contacted by them on each occasion. You can decide whether you want us to share your contact details.
Why do you need access to my medical records?
Combining information from your medical records and questionnaire data provides a comprehensive overview for researchers to use in a wide range of investigations.
We will only access relevant sections of your medical records that will be helpful to the goals of the COVIDENCE UK Study. For example, we will request information such as Hospital Episode Statistics (HES) data which documents hospital admissions, outcomes, and results of laboratory tests for coronavirus infection.
Unless strictly necessary, all information obtained from your medical records will be given a pseudonymised (coded) ID, kept strictly confidential, and stored separately from your personal information (eg name, date of birth).
How will you access my medical records?
NHS Digital and Public Health England/Public Health Wales/Public Health Scotland/the Public Health Agency (Northern Ireland) will use the personal information you give us (your name, date of birth and address) to identify your NHS number and extract information about your hospital attendances, health outcomes and results of coronavirus testing.
What will you do with my medical record data?
Your medical record data will be merged together with your questionnaire data so that we can understand which aspects of your lifestyle, diet or longstanding health conditions associate with increased or decreased risk of disease.
Under what circumstances will you contact the family member or friend whose details I provided at sign-up?
We will reach out to the contact you suggested if we stop hearing from you. This is so that we can find out that you are okay and if you still want to take part in the study.
What if the sign-up form won't accept my information?
If the sign-up form is not working for you (eg not accepting your email address or date of birth), we would first recommend trying to sign up on a different internet browser (eg Google Chrome).
If that still doesn’t work, please email us: COVIDENCE@qmul.ac.uk
How do I change the email address to be used for study communications?
In order to make sure that you continue to receive links to monthly questionnaires, it is essential that we hold your up-to-date email address. If your email address changes, please email COVIDENCE@qmul.ac.uk to let us know.
I am a journalist or represent an organisation who wants to learn more or get involved. Who can I contact?
Thank you. If you are a journalist, please email firstname.lastname@example.org in the first instance.
If you are an organisation, please email COVIDENCE@qmul.ac.uk with your questions or request.