Who we are
OverSight is a research study run by researchers and clinicians at University College London, looking at how conditions that affect sight, such as retinitis pigmentosa, affect people's everyday lives.
University College London is the data controller for the study. That means UCL decides what information is collected about you and is legally responsible for looking after it.
If you take part, you do so through the OverSight iPhone app. Nothing described in this notice happens before you have read the participant information, had the chance to ask questions, and given your consent.
What this notice covers
This notice covers the OverSight iPhone app and this website. It explains what we collect from participants in the study, and separately, the very small amount of information this website handles when you visit it.
It sits alongside the participant information sheet and consent form you are given when you join. Where this notice and those documents describe the same thing, they are meant to agree. Please tell us if you spot anything that does not.
What we collect
We collect what you tell us in questionnaires, health and activity measurements your iPhone already records, and summaries of how you move and use your phone. We do not collect the content of your messages, your photos, the words you type, or a map of where you have been.
Your account details
When you create an account we collect your name, your email address, and the enrolment code given to you by the study team. You also choose a password, which we store only in a scrambled form that cannot be read or recovered, even by us. You may optionally tell us your date of birth and your gender identity. We give your records a participant code so that most study work can be done without using your name.
Your answers to questionnaires
The app asks you to complete questionnaires over the course of the study, including measures of mood, anxiety, general health, wellbeing and mobility, along with short questions about how your day has gone and how you find the app itself. Every question is multiple choice or a number. There are no free text boxes, so there is nowhere for you to accidentally tell us something we did not ask for.
Health and activity data from your iPhone
If you give permission, we read the following from Apple Health. Your iPhone and Apple Watch already record these; the app reads them rather than measuring them itself.
- Step count, walking and running distance, and flights of stairs climbed
- Active energy burned, exercise minutes, and stand time
- Sleep analysis
- Heart rate, resting heart rate, and heart rate variability
You can turn any of these off in the Health app at any time, and you can see exactly what the app has read in Health under Sharing.
Sensor summaries from your iPhone
With your permission, the app also collects summaries that Apple's SensorKit system prepares on your device. These are only available on iPhone. Apple holds this data on your phone for 24 hours before any app can see it, which means that if you withdraw permission, the most recent day of data is never collected at all.
| What we receive | What it does not include |
|---|---|
| How you use your phone through the day, such as how often you unlock it and which categories of app you open | Which specific apps or websites, and anything you did inside them |
| Visits to places you spend time, described as a category such as home, work or other, with arrival and departure times and how far the place is from home | Map coordinates, addresses, or any record of the route you took |
| The light levels around your phone through the day | Anything from the camera, and any images |
| How you type, such as typing speed and how often a word is corrected | The words, passwords, or any other text you typed |
| Movement measurements from the phone's motion sensors, including step and pace information and how steadily you move | Audio, video, or anything identifying who you were with |
Security records
To keep the study data safe we keep technical records: the time and originating network address of attempts to register or sign in, including unsuccessful ones, and a log of which member of the study team looked at which participant records and which data extracts they produced. These records exist so that any misuse can be detected and investigated.
Why we collect it
We collect it to carry out the research: to understand how reduced vision changes everyday activity, mobility, sleep, mood and phone use, and to build a picture of that which clinical appointments alone cannot give. We also use a small amount of it, such as your email address, simply to run the app and to let you reset your password.
Under UK data protection law, universities carrying out research of this kind rely on the public task basis, Article 6(1)(e), rather than on consent as the legal ground. For health and other special category information, we rely on Article 9(2)(j), scientific research in the public interest, with the safeguards set out in the Data Protection Act 2018.
Your consent still matters, and we will always ask for it. It is the ethical and regulatory basis on which you take part, and it is recorded separately from the data itself. Relying on the public task basis in law is what allows us to keep research records complete and verifiable, which is a condition of research of this kind. It does not reduce your ability to stop taking part, which is described under withdrawing.
We never use your information to advertise to you, to build a commercial profile of you, or to make automated decisions about you. We do not sell it, and we do not share it with advertisers or data brokers.
Where it is stored
Your data is held on a server in Falkenstein, Germany, inside the European Economic Area. It is not stored in a public cloud storage service.
In practical terms, these are the protections in place:
- All data sent between the app and the server travels over an encrypted connection, and unencrypted connections are refused
- The database runs on the server itself and cannot be reached from the internet at all
- Members of the study team must use two-factor authentication to sign in to the administration system
- Every view of a participant record, and every data extract produced, is written to a log that can be added to but not altered or deleted
- Repeated failed sign-in attempts lock an account, and the attempts are recorded
- The server will not accept study data at all unless it holds a current consent record for you
The study database holds information that identifies you, including the link between your participant code and your name. Access to it is limited to the members of the study team who need it.
How long we keep it
We keep study data for 20 years after the study ends, in line with University College London's retention requirements for health research records. Keeping records for this long allows the findings to be checked and re-examined long after the study has finished, which is a normal condition of research of this kind.
After that period the data is either securely deleted or fully anonymised, meaning it can no longer be connected to you by anyone, including us.
If you ask us to delete your account, we remove your contact details promptly. Research data already collected is handled as described under withdrawing.
Your rights
You have the right to ask us for a copy of the information we hold about you, to have inaccurate information corrected, and to ask us to delete it, to restrict how we use it, or to object to our using it. You can also ask us to transfer it to you or to someone else in a commonly used format.
Research carries some limits on these rights. Where meeting a request in full would make it impossible to carry out the research, or would undermine the integrity of results already published, the law allows us to decline that part of the request. If that ever applies to something you have asked for, we will tell you plainly which part we cannot do and why.
You can also complain to the Information Commissioner's Office, the UK's data protection regulator, at ico.org.uk/make-a-complaint or on 0303 123 1113. We would be grateful for the chance to put something right first, but you do not have to come to us before going to them.
Withdrawing from the study
You can stop taking part at any time, without giving a reason. Doing so will not affect your medical care in any way.
You can withdraw your permissions on your phone at any time, separately from withdrawing from the study: health data in the Health app, sensor summaries in Settings under Privacy and Security, and notifications in Settings. The app stops collecting as soon as you do. Because SensorKit holds data on your device for 24 hours before any app can read it, the final day is never collected.
If you would like to withdraw altogether, please tell the study team. We will stop collecting anything further and remove your contact details. Data collected before you withdrew is normally kept and used in the analysis, because removing it would distort the results, but please talk to us if you would prefer it were not. This is explained in more detail in your consent form.
This website
This website does not track you. There are no analytics, advertising, or social media trackers on it, and we do not use cookies to profile visitors.
A single session cookie is set by the software that runs the site, which is needed for the password reset form and for study staff to sign in to the administration area. Our web server keeps standard access logs, which include network addresses, for security and troubleshooting.
Changes to this notice
If we change how we handle your information, we will update this page and change the date at the top. If a change materially affects participants, we will tell you directly rather than relying on you noticing it here, and where the change requires it, we will ask for your consent again.
Contact us
If you have a question about your information, or you would like to exercise any of the rights above, please contact University College London's Data Protection Office at data-protection@ucl.ac.uk. They look after data protection for the whole university, including this study.
If your question is about the study itself, such as taking part, withdrawing, or what a questionnaire is for, the study team would be glad to hear from you. You can reach us through the Get Involved section of this site.