Anonymised and Open
Studybugs was started back in 2014 to provide better data on the spread of illness, and to help keep children healthy and in school. With your consent, when you report your child’s absence from school – or when you log your household’s symptoms – we share anonymised, open data with schools, local authorities and researchers within the NHS and elsewhere.
For the past 6 years this data has been supporting research into the underlying causes of childhood asthma, tackling children’s mental health and wellbeing, monitoring the effectiveness of flu vaccinations, tracing food poisoning outbreaks, warning vulnerable people (such as those with immune system disorders, pregnant women and the elderly or frail) about outbreaks of infectious disease such as chicken pox, and more.
We hope it will help in tackling the Covid-19 pandemic too, where there’s a pressing need for data on symptoms in the community, most particularly in children.
What Does “Open” Mean?
What we mean by “open” is:
- The data’s available free of charge
- Anyone can readily access it – you don’t need to ‘request’ access
- There are no legal restrictions on use – the data’s yours as much as ours, to do with as you please
What Does the Anonymised Data Include?
When you enter symptoms, we use ‘natural language processing’ (NLP) algorithms to analyze the text you enter and extract ‘codings’ – numbers that represent the symptoms you’ve described. We’re continually working to make these algorithms smarter so they can understand more of what you type. The anonymised data only includes these coded symptoms, and not your original text (which could include identifying details).
The time of your report is included in the data.
When you report for a child at a school, your anonymised report includes their school. This can be used by researchers as a rough indicator of the ‘place’ of the report.
When you report for yourself, or a child not at school, if you agree then we use browser or app-based geolocation to determine your location at that time. We then deliberately ‘blur’ this by adding a random offset, before including it in the anonymised data as the ‘place’ of your report.
If you provide your own or your child’s gender, this is included in the data.
If you provide your own or your child’s date of birth, the birth year (but not exact date) is included in the data.
With each report we include a unique, anonymous key for the person the report relates to. There’s also a key for an illness ‘episode’, so you can see when a series of symptom reports relate to the same episode.
Here are some examples of anonymised reports (paraphrased in English):
- “A 42-year-old reported having a cough in Brighton at 9.12am today”
- “A girl at St Mary’s Primary School in Hereford was reported as feeling fine at 6.30pm today”
What Doesn’t the Anonymised Data Include?
- Your name or your children’s names
- Anyone’s email address
- Anyone’s date of birth
- Anyone’s exact location
- Anyone’s location (exact or approximate) at any time other than when you report
- The original text of your symptom reports
In some cases, depending on the symptoms you enter and other factors, we’ll ask you further optional questions on behalf of Studybugs’s research partners. If you agree to answer these, your answers will be passed on anonymously to those public health partners.
Can I Opt Out?
If you just want to use Studybugs for communicating with your child’s school, and would prefer for your data not to be anonymised and shared as described above, then you can opt out. Just sign in to the Studybugs website, open “Settings”, go to “Your Account” and tick the box under “Anonymisation”.
How Do I Access the Data?
If you’re a researcher and would like to access the anonymised data we collect, you can find out how here.
What About More Detailed Data?
At present we only share anonymised data, as described above.
So far we’ve found researchers to be very happy with this model. They have access to valuable data that’s not available from any other source, in a way that’s incredibly simple and free of ethical or privacy concerns.
It’s possible that in future some of our research partners might need to access to more detailed data, where individuals could (possibly in conjunction with other data sets) be identified. Should this be the case, we won’t share any such data without first asking your permission.
You can read more about our processing of your personal data in our privacy notice.