How we protect your privacy
We take data protection very seriously. The data that volunteers share with us is kept strictly secure and only shared for researchers to make new discoveries about how everyday smartphone and wearable data may relate to health.
What data is collected?
We will only ever collect data about you that is directly related to this research. With your permission, our app will collect some data from your smartphone and wearable device, if you have one.
These are;
Measures of Physical Activity: to calculate things like steps per hour or per day, minutes of exercise and other movements when carrying or using your device.
Measures of Sleep: the patterns of movement of your smartphone or wearable allow us to estimate your sleep and night-time behaviour patterns
Heart Rate: some wearables allow measurement of heart rate which changes with many health conditions
Questionnaire Data: that help understand your quality of life and any medical or health issues you experience
Environment and Mobility (optional): Your GPS location (whereabouts) allows us to calculate information such as your mobility (how far you travel), what types of travel you use (car, train, walking), and your environment (weather, air pollution, closeness to traffic, green spaces etc). This is optional, you can take part in Smart-Health without sharing your location.
To be able to understand how this data might relate to health, with your permission, we will link this to your health records. These may be held by NHS or other organisations (such as disease registers, GP practices, dentists, occupational health records, or blood donor centres) within the UK.
Protecting your identity
All data shared by participants is de-identified, which means any information that could be used to identify someone (their name, date of birth, address) is removed before it is added to the Smart-Health database.
How is your data stored?
The data is stored in a Secure Data Environment (SDE), a data storage platform which has the highest standards of safety and security. The SDE is not connected to the internet, so is safe from online attacks. Researchers can only access the SDE through a special computer terminal. The data can't be downloaded, or leave the SDE in any way. Researchers aren't even able to make notes with a pen and paper.
You can find out more about Secure Data Environments from Dr. Kate O'Sullivan in this episode of the Digital Health Hubcast.
Who can access your data?
Researchers that are given permission to use Smart-Health data will only be able to access this through the SDE. Researchers will apply with a research question and a committee will decide if this research meets our strict ethical standards and is suitable for Smart-Health. If they are given access, they will be able to access a specific portion of the database, dependent on what they are researching. Researchers will do their analysis on this data, and only this analysis will be able to leave the SDE, never raw data.
A very small number of core staff at Smart-Health will be able to see your identifiable data, this is so you can be identified if you choose to leave the study.
