As a member of the Dementia Research Group’s volunteer database (College of Human and Health Science, Swansea University), the following document outlines how we process your data.
Swansea University is the Data Controller and is committed to protecting the rights of individuals in line with the Data Protection Act 1998 (DPA) and the new General Data Protection Regulation (GDPR).
What information do we collect about you?
Upon registration, you provide us with personal data relating to your name, date of birth, and contact details. When participating in our research, we collect various test scores. For example, we form general ratings on cognitive function in relation to specific questionnaires and determine how quickly and/or accurately you are able to respond to various stimuli. Your data is stored in password-protected files on password-protected computers.
How will your information be used?
This information enables us to allocate you to suitable studies that you may wish to participate in. It also allows us to contact you with information regarding related events that you may wish to attend (e.g. research coffee mornings).
What is our legal basis for processing your personal data?
By registering and providing these details, you opt-in to the database for the purpose of hearing about research opportunities and events, thereby providing consent for us to process your data in this manner. Explicit consent will also be obtained as part of each research study you choose to partake in. This study-specific consent is required to enable the researcher to store test-related data and for your data to be disseminated between the database members and related-researchers.
You are of course free to withdraw your consent at any time, meaning your data will be removed from the database. To do so, please contact us by email (takepart@swansea.ac.uk) or by telephone (01792 518 530).
Who receives your information?
It is only the database managers (currently Dr Claire Hanley and Dr Amy Jenkins) that have direct access to the personal information you provide at registration, and are responsible for processing it as outlined above. The database managers contact you on behalf of individual researchers and it is at your discretion as to whether you contact the researcher to take part in their study. The researchers are not given your personal data. Data relating to test scores may be stored within the database, and transferred between the database managers and individual researchers, where explicit consent has been obtained, as outlined above. Your data is not transferred outside of the EU.
How long will your information be held?
The purpose of data processing is on-going, such is the nature of our research. Your data will, therefore, be held indefinitely, or until which time you wish to withdraw your consent.
What are your rights?
You have a right to access your personal information, to object to the processing of your personal information, to rectify, to erase, to restrict and to port your personal information. Please visit the University Data Protection webpages for further information in relation to your rights.
In the first instance, any requests or objections should be made to the database managers by email (takepart@swansea.ac.uk) or by telephone (01792 518 530).
Requests or objections can also be made in writing to the University Data Protection Officer, by email (dataprotection@swansea.ac.uk) or post:
University Compliance Officer (FOI/DP)
Vice-Chancellor’s Office
Swansea University
Singleton Park
Swansea
SA2 8PP
How to make a complaint
If you are unhappy with the way in which your personal data has been processed you may in the first instance contact the database managers or the University Data Protection Officer, using the contact details above.
If you remain dissatisfied then you have the right to apply directly to the Information Commissioner for a decision. The Information Commissioner can be contacted at:
Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF