The University of Exeter, Kings College London (KCL) and South London and the Maudsley NHS Foundation Trust (SLaM) are committed to safeguarding your personal information.
For the purposes of the data protection laws, the Data Controller in relation to any personal data you supply is both the University of Exeter of Northcote House, The Queen’s Drive, Exeter, Devon, EX4 4QJ, United Kingdom and Kings College London King’s College London, Institute of Psychiatry, Psychology and Neuroscience, De Crespigny Park, Denmark Hill, London, SE5 8AF.
What data do we hold?
For the purposes of the study we collect certain personal and sensitive personal information from you as follows:
- Full demographic details, including your name, date of birth, email address, home address (including post code), gender, ethnic origin, GP details, NHS number, marital status, employment status and highest level of education completed. Submitting these demographic details is a requirement for participating in this study because they are basic data that are used in statistical analysis alongside the information you provide in questionnaires and cognitive tests. This gives context and meaning to your information in relation to the information provided by other participants.
- Lifestyle information including physical exercise, smoking status, diet and cognitive activities
- Medical history including major conditions such as stroke, heart disease, Parkinson’s disease, and diabetes
- Major aspects of your brain health such as memory or reasoning that influence how well you perform everyday activities which we gather using validated cognitive tests
- Responses to a detailed mental health questionnaire including validated scales for depression, stress, anxiety, trauma, social cognition and mood
- Detailed information on everyday behaviour and ability to complete instrumental activities
All personal information will be treated as confidential.
In order to ensure that we can improve our site where required and to provide you with a good user experience, we collect information about your use, such as browser type and version, operating system and platform, information about your visit, including the full Uniform Resource Locators (URL), clickstream to, through and from our site (including date and time), tests you viewed or searched for, page response times, any download errors, length of visits to certain pages and page interaction information (such as scrolling, clicks, and mouse-overs).
How do we use your data?
Here are some of the ways we will use your personal data; this is not exhaustive, but is intended to provide you with an idea of the things that we may do throughout your relationship with the University of Exeter, Kings College London (KCL) and South London and the Maudsley NHS Foundation Trust (SLaM). All personal and sensitive personal information is stored in an encrypted format in the Participant Database located in the UK West region Microsoft Azure cloud servers. Pseudonymised data (where your name is replaced by an ID number) is statistically analysed as part of a cohort of approximately 23,000 participants by the University of Exeter and Kings College London for the study of ageing and dementia. This pseudonymised data does not contain any information that may directly identify you. The key will be held separately and will not be accessible by anyone who is analysing the data. The data gathered online through questionnaires and cognitive tests will be completely anonymised. The data will be used for the publication of results of the study in academic/scientific publications or in resources for research, education and public engagement. We will maintain the data for use in future research projects or research archives.
We may use your email address to send reminders, updates and to enable communication regarding any emerging safety issues and to maintain participant dignity and wellbeing. Neither the University of Exeter nor Kings College London will use your personal data to contact you about anything not directly related to this study. The South London and the Maudsley NHS Foundation Trust will store a copy of the pseudonymised data and will not have access to your personally identifying data or contact details.
What is our legal basis for processing your data?
You will be asked to consent to providing this information as part of the registration process.
However, your personal data is collected and processed by the University of Exeter and Kings College London to enable the Universities to carry out research in the public interest.
How will we share your data?
Neither the University of Exeter nor Kings College London will use or share with third parties your personal data for a purpose other than set out in this policy.
How long do we keep your data?
Your personal information will be held securely so long as you are part of the study. When the study is completed we will securely store your personal information for as long as is required for the purposes of the study but no more than 10 years. It will then be securely destroyed. We will store all anonymised data indefinitely on an archive such as the University of Exeter’s open access archive, Open Research Exeter (ORE).
If you choose to withdraw from the study we will retain a record of your consent to participate in the study for 10 years after the study is completed. It will then be securely destroyed. This record includes all versions of consent you gave including your name, date and time consented, the first four alpha-numeric characters of your postcode and your registration ID. We will also retain all anonymised assessment results data you have submitted as detailed above because it will not be possible to re-identify and remove your personal data once it has been anonymised. During the withdrawal process we will give you the option to remove your remaining personal information (i.e. data that directly identifies you) which includes your email, home address, telephone number, and doctor’s name and address. If you choose to remove this personal data you will no longer receive any communication from us. If you request to re-join the study at a later date, you would need to start from the beginning and wouldn’t be able to re-activate your account. If you choose for the study to retain your personal data, you would be able to re-join the study and continue adding to the results data you have already submitted. You can choose whether you receive communications about the study if you decide that we can retain your data. If you choose to withdraw from the study, you will no longer be able to log into the study website.
If you have provided information to us about another person (including their sensitive personal details), you will be asked to confirm that you have their permission to provide that information to us for the same purposes and you have told them who we are and what we will use their data for, as set out in this notice. This confirmation of their permission will be given at the time you provide that information to us.
How do we protect your data?
All personal data and sensitive personal data is collected via the website www.protectstudy.org.uk using Secure Sockets Layer (SSL) software, which encrypts the information you input. Personal and sensitive personal information will be stored securely by Microsoft Azure, UK West, and will be managed within the framework of Microsoft Azure governance procedures. Personal and sensitive personal information will be stored in separate databases in encrypted format and in a restricted area, known as a Participant Database, accessible by University of Exeter approved research teams only. All data extracted from the Participant Database for statistical analysis is pseudonymised and is stored in a separate database, known as the Results Database; this data set contains no link to any information that can personally identify you, such as name, telephone number or email address.
The pseudonymised data that we store in the Results Database will be stored securely by Microsoft Azure, UK West, and will be managed within the framework of Microsoft Azure governance procedures. A copy of the data collected through the website www.protectstudy.org.uk will be securely downloaded daily to SLaM servers where researchers at KCL can access it. Data held in the Results Database may be shared with global researcher partners of the University of Exeter and Kings College London.
Where we have given you (or where you have chosen) a password which enables you to access certain parts of our site, you are responsible for keeping this password confidential. We ask you not to share a password with anyone.
Unfortunately, the transmission of information via the internet is not completely secure. Although we will do our best to protect your personal data, we cannot guarantee the security of your data inputted to our site; any such inputting is at your own risk. Once we have received your information, we will use strict procedures and security features to try to prevent unauthorised access.
Your rights and preferences
You have a number of rights in relation to the personal data that is collected and held about you:
- The right to be informed
- The right of access
- The right to rectification
- The right to erasure
- The right to restrict processing
- The right to data portability
- The right to object
In the information above and in the participant information sheets, we have provided information on how these rights apply in the PROTECT UK study and the implications of exercising these rights.
If you have any questions about this policy, or any other aspects of your privacy with respect to the PROTECT UK Study, or if you wish to invoke one of your above rights, please write to us at the following relevant address:
College House 1.23
St Luke’s Campus
The University of Exeter
Exeter, EX1 2LU
Institute of Psychiatry, Psychology and Neuroscience
King's College London
16 De Crespigny Park
London SE5 8AF
Alternatively, you may also contact
The University of Exeter’s Data Protection Officer who is responsible for monitoring compliance with relevant legislation in relation to personal data, by emailing email@example.com or King’s College London Data Protection Officer at firstname.lastname@example.org.
You have the right to lodge a complaint with the Information Commissioner’s Office at www.ico.org.uk/concerns.
This Privacy Notice will be kept under review. Any changes will be updated on our website and communicated as appropriate.
PROTECT Cookies Policy
A cookie is a small amount of data, which often includes a unique identifier that is sent to your computer, tablet or mobile phone (referred to here as a "device") browser from a website's computer and is stored on your device's hard drive. Each website can send its own cookie to your browser if your browser's preferences allow it, but (to protect your privacy) your browser only permits a website to access the cookies it has already sent to you, not the cookies sent to you by other web sites.
You block cookies by activating the setting on your browser that allows you to refuse the setting of all or some cookies. However, if you use your browser settings to block all cookies (including essential cookies) you may not be able to access all or parts of our site.
Third Party Cookies
During your visits to this website you may notice some cookies that are not related to this study. When you visit a page containing embedded content from another site, for example, YouTube, you may be presented with cookies from these web sites. The University of Exeter and Kings College London do not control the dissemination of these cookies. You should check the third party web sites for more information about these.