Frequently asked questions
Who created the ZOE Health Study?
The ZOE Health Study was created by doctors and scientists working in partnership with ZOE – a health science company.
The app was initially used to study the symptoms of COVID-19 and track the spread of this virus. We’re now additionally looking at major diseases including cancer, dementia, heart disease. This research is led by Prof. Tim Spector, professor of genetic epidemiology at King’s College London and director of TwinsUK.
TwinsUK is a scientific study of 15,000 identical and non-identical twins, which has been running for nearly three decades. As well as using the app to study symptoms in the general population – TwinsUK will use it to understand how symptoms develop with 5000 participating twins. Their research is funded by the Wellcome Trust and the National Institute for Health Research.
What is the aim of the research?
The research aims to help scientists understand COVID-19 and other major health conditions and illnesses, with the following specific aims:
- Better identify and understand symptoms of COVID-19
- Understand how vaccines affect the spread of disease and severity of symptoms
- Understand how long the protection of vaccines lasts
- Understand how fast viruses may be spreading in your area
- Identify high risk areas of disease in the country
- Identify who is most at risk by better understanding symptoms linked to health conditions
- If you opted-in to wider health studies or joined the study after 2nd September 2021, your data can be used to investigate a wide range of health conditions, including other infectious diseases, dementia, cancer, cardiovascular disease, and more, which helps ZOE in its mission to improve human health
- In the future, we hope we’ll be able to use this data to help the NHS support the sick, and individuals to live healthier lives. This app is not intended to be a diagnostic tool. For official advice about the coronavirus please visit the NHS website
Who will be using my data?
For all our studies:
- Your data is protected under GDPR, and can only be used for the purpose to which you consent.
- We always try to minimise the amount of personally identifiable information we collect (e.g. year of birth but not date of birth), while recognising that sometimes the research requires it.
If your consent is limited to COVID-19 studies:
- Your data will not be used for commercial purposes.
- The data you share will be used for research purposes by King's College London, Guys & St Thomas' Hospitals and data scientists at ZOE Global Ltd. It may also be shared with the UK National Health Service (NHS).
- All our research partners have data sharing agreements and ethics approval to use it for research purposes.
- Anonymised data may be shared with partner research institutions. To do so, an anonymous code will be generated to replace your personal details.
- Our partner institutions include: Harvard University, Stanford University, Massachusetts General Hospital, Tufts University, Berkeley University, Nottingham University, University of Trento and Lund University.
- You can share your name and mobile number if you wish, but this is optional and is intended to allow us in the future to provide this information to the NHS should you appear at risk. This option is not available today, and the app does not provide any diagnostic advice. If you have any health concerns you should go to the NHS website.
If you’ve consented to contribute to wider health studies beyond COVID-19:
- The data you share will be used for research purposes by King's College London and data scientists at ZOE Global Ltd. It may also be shared with the UK National Health Service (NHS).
- Our research partners have data sharing agreements and ethics approval to use it for research purposes.
- We will use your data to investigate a broad range of health outcomes including serious diseases and health conditions, including infectious diseases, dementia, cancer, cardiovascular disease, diabetes, non-alcoholic fatty liver disease, obesity, autoimmune diseases and more.
- We may invite you to participate in research run by third parties. This is restricted to sending you an invitation to participate, but there is no obligation to take part.
- We may develop commercial applications in the field of health, nutrition and lifestyle based on aggregated data from our contributors.
We do all of the above because ZOE strives to produce good science. We believe that making the results of our research widely available maximises its positive scientific impact.
ZOE is committed to helping people live to their fullest through understanding individual health responses in the real world and using that to personalise lifestyle recommendations. The science that we generate using the data collected via this app will better empower ZOE to fulfil this mission.
How long will my data be used for?
We are unable today to set any particular time limit on the storage of your sensitive personal data, but we will keep it under regular review and ensure that it is not kept longer than is necessary. Data about the spread of the virus is likely to be extremely valuable for researchers studying both this virus and in understanding epidemic spread for the future. We are likely, therefore, to retain this information for much longer.
How will my data be protected?
We take data security very seriously and enforce best practices to ensure your data is protected. This doesn't mean that there is no risk but we have taken every precaution to minimise that for you.
When we share data with researchers at partner institutions, such as Harvard University and Stanford University, it will be anonymised, but as the USA has different rules on data protection they may not protect your data in the same way as, or as well as, under GDPR.
We are permitted to do this as this is all part of the research you consented to. Contributors can opt out at any time by emailing; email@example.com.
Will someone make money off my data?
While ZOE Global Ltd is a commercial entity, the ZOE COVID Study app was built for free to support King's College London's vital COVID-19 research, and any data you provide will not be sold.
However, if you have opted in to our wider health studies research (not just COVID-19), ZOE is allowed to use aggregate data from our studies to develop commercial health products. In doing this, our studies help us achieve our mission to improve human health - not just conduct research on it.
For more information, visit our Opting-in to ZOE’s wider health Studies Infosheet.
How can I delete my data?
If you would like us to stop processing your personal data, you may withdraw your consent at any time by selecting 'Delete my data' from the main menu in the app. This will withdraw any consents you’ve given and we’ll delete all your data.
To opt out of our COVID study, email us at firstname.lastname@example.org. When you withdraw your consent, we will delete all personal data we hold about you.
If you opt in to more health studies but later decide you only want to contribute to COVID-19 research, email us on email@example.com. We will remove all data from the health studies within 14 days.
What are ZOE’s ‘wider health studies’?
On the 2nd September 2021, ZOE launched its wider health studies initiative in the ZOE COVID Study. For those who opted-in the data will be used to study a wider range of health conditions beyond COVID-19.
The COVID-19 pandemic proved how critical our app-based data collection methods were in making new discoveries about disease. We’re now using the same methods and the help of our incredible contributors to fight all sorts of major diseases, including cancer, dementia, heart disease and more.
There are other symptom studies - are you taking steps to standardise and share data?
Yes. We are working with researchers around the world, and this app reflects input from many countries. We expect that the questions we ask will evolve as we learn more about the virus, and King's College London will be coordinating data sharing with researchers in the UK and other countries to try and learn as fast as possible.
My symptom isn't listed - can I add it?
We are constantly reviewing the latest research and advice from scientists in order to include all relevant symptoms. If you are experiencing a symptom that is not currently listed in the app, then we now have an additional question that allows you to share this with us. You can do this by reporting for yourself, selecting 'I'm not feeling quite right', and adding your symptoms to the 'Other symptoms' field at the bottom of the page.
Can I report symptoms on behalf of someone else, eg my family?
Yes. You may add multiple profiles on the app and report symptoms on behalf of someone else, provided that you have their consent to do so. Please ensure that your app is updated to the latest version in order to do this.
I may have had COVID-19 already - can I report my history of symptoms?
Yes. We have included new questions about previous exposure to COVID for new users only, including any symptoms that you experienced before you started reporting with the app, and when you experienced these symptoms. Please ensure that your app is updated to the latest version in order to do this.
I would like to share my symptoms with relatives so they know if I get sick - can I do that?
Sharing your symptoms with others is not currently possible. We may make this feature available in future, but as a small, not for profit team we appreciate your patience.
I'd like to see what symptoms are reported near me or across the country –how can I see what is going on?
Can someone under 18 use the app?
No one under 18 is able to use our app directly. However, as the parent or legal guardian of a child you may report on their behalf by adding them as an additional profile, provided that you follow the appropriate consent process as outlined in the app.
Why do I need to register with an email?
We use your email address so that if you lose your password we can send you a new one. You can use whatever email address you wish.
I've spotted a bug, or would like to suggest a feature - where should I send it?
This is a not for profit app that was produced in a very short development time, therefore we admit there may be a bug or two. We welcome any and all feedback about our app in the relevant app store, or at firstname.lastname@example.org. Please bear with us as we resolve these issues.
I'm unable to create an account
We are aware some users have experienced issues creating an account on the app. This is a not for profit app that was produced in a short development time, therefore, there may be a few bugs. The number of users scaled from zero to over half a million within 24 hours. The good news is some of our team have built software that has scaled to hundreds of millions of users, but we still need to move fast to catch up! We recommend uninstalling and reinstalling the app and try creating an account again. If this doesn't work, please contact us at email@example.com. We are working on a better solution but this is a non-profit initiative so please bear with us.
I mistyped my email when registering for the app - what should I do?
If you uninstall and reinstall the app, you will be logged out of the app and you can try to create a new account with the correct email address. We know this isn’t a long-term solution, but it is a short-term fix that we are using for now.
My password isn't working when I try to log in, what should I do?
If you are experiencing trouble logging in – please select 'Forgot your password?' at the bottom of the sign in screen, enter the email address that you used to sign up for the app, and we will send you a link to reset your password. Please ensure that you enter the same email exactly that you used when creating an account, as you will otherwise not receive a password reset link. If you have ever received one of our weekly emails, you can confirm the exact email you registered with by checking the 'to' address on that email. If this doesn't work, please contact us at firstname.lastname@example.org.
How can I set a daily reminder to log my symptoms?
Our app will send you a notification towards the end of each day if you haven't reported how you are feeling that day, provided that you have notifications enabled in your phone settings. If you are unsure if you have notifications enabled, in the app menu, there will be a button labelled "Turn on reminders" where you can ensure your device settings are correct.
Will the app be available outside the UK and USA?
We are currently available in the UK and USA. We hope to release to other regions in the near future, based on an open-source approach. If you are interested in supporting the app – through development skills, local language expertise, or other skills – please let us know by emailing email@example.com.
Will you be launching a web-based version of the app for those without smartphones?
Although this is not currently available, we intend to do so as soon as we have the resources. We realise that it is important for those who do not have smartphones or are otherwise unable to use a mobile-based app.
Will you make this app available for those with limited sight?
We are aware that our app fails to meet some accessibility standards and are working to resolve these issues.
Still have a question? Email us at firstname.lastname@example.org