Information sheet: Opting in to ZOE's wider health studies

Ethical Clearance Reference Number: LRS/DP-20/21-25809  

Why is ZOE studying other diseases?

We, ZOE, in collaboration with King’s College London (KCL), hope to take the knowledge and understanding it has amassed in app-based community science from the COVID-19 pandemic and apply them to other common diseases that affect human health.
Which health conditions will ZOE research?

ZOE’s broader research may include, but is not limited to:

• Heart disease

• Cancer

• Joint and bone conditions

• Dementia

• Mental health

• Nutrition and gut health

• Women’s health

• Vision and hearing conditions

• Autoimmune conditions

• Skin conditions

• Lung disease

• Brain and nerve (neurological) conditions

If you choose to take part, you can select the areas of interest from the above list, which help to inform the selected research projects and may be used to tailor communications.

Data we collect from studies will be used by scientists to learn more about why and how people develop health conditions, and review methods of diagnosis and treatment going forward. 

If you give consent to take part in this new wider research, your data will contribute to all the relevant research studies, not just the conditions you’ve selected. 

How will the ZOE app change?

Over time, the ZOE COVID Study app will begin to integrate updates related to the wider health research studies. We will make anonymous data available to ZOE and King’s College London (KCL) scientists to start researching a range of health conditions.

When the app is updated, contributors who have consented may be asked to take part in additional surveys or short questionnaires, for example, every few weeks. We may also request measurements to track health measures such as blood pressure.  Should you wish to take part in these, you will be provided with additional information, and any relevant equipment will be provided, where necessary.

You will not receive health advice based on your own symptom reports and you should always inform your doctor or other healthcare provider of any new or changing symptoms.

Participation will be optional, and you can withdraw at any time. It will be up to you how much or little you wish to contribute.

Will I need to do anything differently?

At first there are no additional requirements beyond logging your normal health reports.  You will let us know the health areas you are interested in and, in time, new symptom options will be added to your daily health report questions.

If you agree to take part, you may be asked about your interactions with healthcare professionals and what the outcomes were, such as trips to the GP or the hospital.

Will the ZOE app still track COVID-19?

Yes, as long as COVID-19 is a key public health concern, we’ll track it and continue to report back our latest scientific findings.

How will ZOE share the findings of research?

ZOE will display or provide links to key research findings in the app, share them through webinars, and produce informative blogs.

ZOE and KCL will publish detailed results in preprints and peer-reviewed scientific papers, and present them at scientific conferences so others in the research community can learn from what we’ve found.

How will ZOE use my data?

ZOE will never sell data.
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The data provided through the app for COVID-19 is shared securely and anonymously with our research partners at King’s College London and other research institutes fighting the pandemic through the SAIL databank in Swansea. 

However, the data ZOE collects towards our research into other diseases will be restricted to King’s College London and ZOE only, unless you ask to be included in a research study. When we share data with anyone, information such as name, address and email address will be removed except where data is shared for the purpose of COVID-19 and being shared with the NHS. We will delete your data  at any time on request.

ZOE might also use data logged in the app to invite you to take part in research studies, run by  bonafide research organisations, including those with relevant health conditions to take part in clinical trials. This is optional and we will not share your data with these organisations unless you ask us to.

ZOE may seek payment from such organisations to help sustain its services. Read our privacy policy to find out more about how we collect and use data.

What else will ZOE do with my data?

ZOE is a commercial company that develops data science tools to help understand health. 

In the future, ZOE may develop commercial products using data from the app - for example, machine learning algorithms that have been ‘trained’ using app data, or products based on insights from our research. This is needed to sustain the tools, technology and personnel that are needed to carry out our work for the long term.
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Any commercial product will always be based on combined data or the summary results of our analyses and will not contain any individual’s data.

More details on this in our privacy notice under Research Studies.

How can I opt out or withdraw from ZOE research or delete my data?

Taking part in ZOE’s broader health research is optional. If you only want to take part in COVID-19 research, you can just say ‘no’ when asked to re-consent. You can always opt in later if you want to.

If you would like to delete all of your information, including all COVID-19 data, you should visit https://privacy.zoe.com/zoe

If you opt into more health studies but later decide you only want to contribute to COVID-19 research, you can opt out by visiting https://privacy.zoe.com/zoe. We will remove all data from the health studies within 14 days.

Who should I contact for further information?

If you have any questions about the app itself or how we collect and manage your data before sharing for the purposes of research, please contact ZOE at hello@joinzoe.com.

What if I have further questions, or if something goes wrong?

If this study has harmed you in any way or if you wish to make a complaint about the conduct of the study you can contact King's College London using the details below for further advice and information:
 
The Chair, Biomedical & Health Sciences, Dentistry, Medicine and Natural & Mathematical Sciences Research Ethics Subcommittees (BDM RESC) – rec@kcl.ac.uk.

Thank you for reading this information sheet and for considering taking part in this research.