Information on the data we receive from the app, how we safely manage access to it, and why it's so important.
Why is the app data important?
Over 2 million people from across the UK have signed up to the COVID-19 Symptom Study app, developed by King’s College London and ZOE, to voluntarily track their daily health and any potential COVID-19 symptoms.
This amounts to a huge volume of data!
When data from many people is brought together, we can start to look for patterns and trends in the wider population.
Building this bigger picture is vital to help us understand the virus and associated disease, and take steps to slow its progress, and plan clinical care.
Visit the ZOE website for more information on the app
How is BREATHE involved?
Developed by King’s College London and ZOE, the app was originally designed to be used as part of a single, specific research programme, TwinsUK.
When it was made available to the general public there was a huge, unanticipated surge of interest in people keen to share information on their symptoms to help in the fight against COVID-19.
Due to the wonderful response from so many people choosing to track their symptoms, the opportunities to use this data to inform care are huge. Researchers at King’s College London are already working hard, using the data to answer some key questions about COVID-19. See more on the ZOE website.
At BREATHE we have joined with King’s College London and ZOE to enable the ethical and safe use of the app data by other researchers and decision-making bodies to tackle the pandemic in the UK.
We are doing this by:
- Providing a place where data can be securely stored and accessed – the SAIL Databank.
- Managing the process by which people can access the data, with an accelerated process for requests from the NHS and those with anticipated direct impact to the COVID-19 response.
- Providing initial analyses of the data to decision-making bodies, keeping them up to speed on the latest information to support key decisions on the management of the virus across the UK.
What data do we receive via the app?
BREATHE only receives ‘de-identified’ app data. This means that any app data we receive has had identifiable information removed.
Each day, de-identified data is transferred into the secure SAIL Databank. This includes:
- Demographic information, such as age (within a 5-year age band), gender and location of the individual (scaled to a high-level of geography called lower-layer super output area (LSOA), which is an area bigger than a postcode typically consisting of populations of 1000-2000 people).
- Self-reported health information, such as smoking status, any pre-existing medical conditions, medication use and current treatments, and whether the individual is experiencing COVID-19 symptoms.
- If displaying symptoms, individuals can provide additional self-reported health information, such as whether they have tested positive for the virus, a description of their symptoms and whether they’re currently receiving treatment.
Please note this is not a complete list of all data collected via the app.
Who can request access to the data?
People using the app have consented to make the data available for use in health research, but not for commercial purposes.
Relevant staff from across the NHS, national governments and related agencies, academic institutions and others can all request access to the deidentified app data via the secure SAIL Databank.
We are accelerating requests from the NHS, government, and those with anticipated direct impact to the COVID-19 response.
Please see the ZOE Privacy Notice for further information.
Visit the HDR UK Innovation Gateway to request access.
What is the process for granting access? And how is the data accessed?
All applications are reviewed by the SAIL Databank Information Governance Review Panel (IGRP). This Panel reviews the proposals to ensure they comply with information governance principles and the ZOE privacy policy, and represent an appropriate use of data in the public interest. The Panel includes representatives of professional and regulatory bodies and the general public.
If an application is approved, researchers can be granted access to the de-identified data.
This is managed via a platform which uses remote access technology to enable approved researchers to use data within the SAIL Databank virtual environment from their own desktop, therefore the app data does not leave the secure SAIL Databank virtual environment.
There are protocols in place which allow user authentication and monitoring.
Visit the SAIL Databank website
Why is it important to have this process in place?
Health data should always be kept safe and secure, to protect privacy, ensure maximum public benefit of its use, and that it should be handled in a responsible way.
Through this process, we are safeguarding the data generated by the app. It is available for people to use, provided they can demonstrate that they are using it for a valid purpose.
How will this help the NHS?
The app data provides vital information about the symptoms and spread of COVID-19. In turn, this information will help to support nationally led planning and research, and the effective deployment of limited NHS resources such as healthcare personnel, testing kits or ventilators to where they are most likely to be needed.
Contact
For any queries on BREATHE's involvement in the app, or accessing the data, please email us on breathe.admin@ed.ac.uk
If you have any feedback on the app, or technical issues, please check the FAQs on the ZOE website or email the ZOE team on covidtrackingquestions@joinzoe.com
