ZOE to fight more health conditions
September 7, 2021
This article has not been updated recently
- Why is ZOE doing this?
- Which health conditions will ZOE research?
- Who can get involved?
- How will the ZOE app change?
- What will I need to do differently?
- Will the ZOE app still track COVID-19?
- How will ZOE share the findings of research?
- How will ZOE use my data?
- What else will you do with my data?
- How can I opt out or withdraw from ZOE research or delete my data?
- Let’s fight more than just COVID, together!
Since the start of 2020 COVID-19 has overshadowed everything, so we’re asking you to help us research the health conditions that matter most to you.
Over the past 18 months you, along with over 4.5 million other ZOE COVID Study contributors, have shown how app-based community science projects like ours, can transform the scientific world and let anyone fight COVID from the comfort and safety of their home.
Your data has changed the course of the pandemic, keeping the public, healthcare professionals and the Government informed about how COVID-19 rates are changing in near-real time.
Information from more than 423,545,268 million daily health reports has led to vital discoveries that have changed medical guidelines, including the discovery that loss of smell (anosmia) is a major symptom of COVID-19. We also showed that sudden confusion (delirium) is a key sign of COVID-19 in the elderly, helping carers and families know what to look for in their loved ones.
If together we can achieve all this for COVID, imagine what we could do beyond the pandemic.
Why is ZOE doing this?
Whilst the world has been focused on COVID-19, many other major health conditions have been neglected due to low healthcare accessibility causing what many are calling the "invisible pandemic". In the UK, cardiovascular disease is responsible for 1 in 4 deaths and every two minutes someone is diagnosed with cancer.
COVID has helped catapult community science to the forefront of groundbreaking research, showing us that anyone and everyone can further science and our understanding of human health, by simply taking a minute a day to log their health. So why stop at COVID when we all have family and friends that we’ve lost to, or are suffering from, other major diseases?
So that’s why we’re now asking you to help us fight even more health conditions.
Which health conditions will ZOE research?
We want to know what matters most to you. So we’ll start by asking you to select the health conditions that you want to help fight, including:
- Heart disease
- Joint and bone conditions
- Mental health
- Nutrition and gut health
- Women’s health
- Vision and hearing conditions
- Autoimmune conditions
- Skin conditions
- Lung disease
- Brain and nerve (neurological) conditions
- And more
By telling us this, you’ll be helping to set the agenda for our research going forward.
We’ll then ask if you (the primary profile user) are happy to consent to your primary profile data being used in future health research studies through the app. Consent can not be given for secondary profiles at this time, but we’ll give you the option to opt in on behalf of others you report for as soon as we can.
The data we get from these studies will help scientists answer important questions about why and how we get sick, and ultimately, how we can better diagnose and treat disease.
If you consent to take part in this new wider research, your primary profile data will contribute to all the relevant research studies, not just the conditions you’ve selected. But we’ll make sure to invite you to take part in specific surveys or activities based on your selection. And over time we’ll show you all the relevant insights from our research about the conditions you choose, so you can see the progress we’re making in the areas you care about.
Who can get involved?
At the moment, this is only available to our UK contributors.
How will the ZOE app change?
You won’t notice anything new at first, but from the moment you opt in, the information you provide will be available to ZOE and King’s College London scientists to start researching a range of health conditions.
Right now, we’re setting up these studies with our colleagues at King’s and when we’re ready we’ll ask those of you who have re-consented to take part in additional surveys and other activities. These will usually only take a few minutes of your time each time.
All of this is optional, and you can withdraw at any time.
What will I need to do differently?
Just as you already do, keep logging daily as this gives scientists a granular picture of your day-to-day health and how it changes over time. But keep a watch out, as soon we’ll introduce new symptoms that you can report.
We’ll continue to ask you about your interactions with healthcare professionals and what the outcomes were, such as trips to your GP or the hospital.
You’ll be invited to take part in various short questionnaires relating to the different major diseases that our scientists are investigating. These will be infrequent, for example, once every few weeks.
We might also periodically ask you to carry out simple tasks to track your health metrics such as mental agility tests or measuring your blood pressure.
It will always be up to you how much or how little you want to contribute.
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 to you.
How will ZOE share the findings of research?
It’s really important to us that everyone who participates in our research finds out what we’ve discovered with their help. We’ll be playing back key research findings through the app, sharing them through our expert webinars, and writing about them on our blog.
On the scientific side, we’ll 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?
We will never sell your data. That’s a promise.
The data you provide through the app to fight COVID-19 continues to be shared anonymously and securely with our research partners at King’s College London and other legitimate research institutes fighting the pandemic through the SAIL databank in Swansea.
However, the data that you give us towards our research into other diseases will be restricted to King’s College London and ZOE only, unless you opt in to share it more widely in the future.
Any personal identifying information will be removed before sharing so that no one can be identified, unless you specifically permit us to do otherwise. And you can delete your data at any time.
We might also use data you log in the app to invite some of you to take part in research studies run by other bonafide research organisations, such as inviting contributors with certain health conditions to take part in relevant clinical trials.
This is entirely optional and we will never share your data directly with these organisations. We’ll always offer you the chance to take part and you can decide what you want to do.
We may seek payment from such organisations to help sustain our services.
What else will you do with my data?
ZOE is a commercial company that develops data science tools to help understand health.
ZOE relies on high quality science. Making the results of our research widely available maximises its positive scientific impact. We are 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 us to fulfil our mission.
In the future, ZOE may build commercial products that have been developed 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 team that is needed to carry out our work for the long term.
These will always be based on aggregated data or the results of our analysis only.
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 our broader health research is entirely optional. If you only want to contribute to COVID-19 research, just say no when we ask you to re-consent. You can always opt in later if you change your mind.
If you’d like to delete your information including all your COVID-19 data, please email firstname.lastname@example.org. We’ll always be grateful for the contributions you’ve made to our studies so far.
If you opt in to more health studies but decide you only want to contribute to COVID, you can opt out on the app. Just click on the menu in the top right hand corner, select 'Wider Health Studies', scroll down to the button stating 'Opt out'. Click there and we’ll remove your data from the health studies within 14 days.
Let’s fight more than just COVID, together!
In a recent pilot study, the vast majority of participants said they wanted to get involved in research into other health conditions, so we’re hoping that millions of you will help us in the next stage of the journey towards understanding and improving human health.
If you want to join us in fighting other important health issues beyond COVID-19, just open the ZOE COVID Study app and follow the questions to opt in.
And if you’re not already a contributor and would like to get involved, simply download the app, register an account and start logging.
Thank you to every single one of you who have got us this far. Now, let’s see what else we can do!