This Privacy Notice explains how the University of Southampton collects, stores and uses your personal data (information about you).
What personal data are you using?
Your personal data includes:
- information you or your nominated contact person gives directly to the Active Brains research team or online on the Active Brains website
- information about your health from your NHS GP Practice
- sound recordings and written transcripts (the words you say written down) if you do telephone or face-to-face interviews with someone from the Active Brains research team
Why are you using my data?
To help to carry out the Active Brains research study.
The Active Brains study is testing an online website to help people aged 60-85 with lifestyle changes and brain training activities which may help with memory and thinking skills. The study’s Research Ethics Committee (REC) reference number is 20/YH/0018 and its University of Southampton Ethics and Research Governance Online (ERGO) number is 53289.
How will you use my data?
Your NHS GP Practice will use your name, NHS number and contact details to contact you about the research study, and to make sure that information about your participation in the research study is recorded for your care. Your NHS GP Practice will also give study-related health information about you from your medical records to the Active Brains research team in order to carry out the research study (unless you are in the ‘Cohort study’ group, in which case study-related health information about you from your medical records is not needed).
The University of Southampton research team will use the information you or your nominated contact person gives directly to the Active Brains researchers or online on the Active Brains website, scores from brain training games you play on the Active Brains website, and information about how you use the website to carry out the research study. This includes using the email address you provide to send you emails from time to time. You can stop or change how often you receive these emails by changing your settings on the Active Brains website.
If you are in the ‘Active Brains plus support’ group and talk to or email someone from the Active Brains research team, information you give will also be used to carry out the research study.
If you do telephone or face-to-face interviews with someone from the Active Brains research team to talk about how it was for you to use the Active Brains website, the sound recording of your interview and the written transcript (the words you say written down) will also be used to carry out the research study. The sound recording may be sent to a transcription service based outside of the University of Southampton in order to have the words written down. Your name and contact details will not be shared with this service. The service will keep your sound recording and written transcript private and will delete them after returning them to the Active Brains research team.
The only people at the University of Southampton who will have access to your personal data will be people from the Active Brains research team who need to contact you to complete the steps of the research study, to check that the research study is managed properly, and to analyse the results of the research study. To safeguard your rights, only the minimum information about you necessary for these purposes will be used. Responsible members of the University of Southampton may be given access to data about you for monitoring purposes and/or to carry out an audit of the study to ensure that the research is complying with applicable regulations.
As partners for this research study, researchers from the Active Brains research team at the Universities of Exeter, Cambridge, and Newcastle, as well as regulatory organisations, may also look at your personal data and study-related sections of your medical notes to carry out the research study or to check that the research study has been conducted correctly. To safeguard your rights, only the minimum information about you necessary for these purposes will be used.
Information about you may be used for research or teaching purposes once personal details that could identify you (like names, and contact details) are removed. Once the research study is finished, the data will be available to other research teams, without any details that could identify you. This is to make sure that the research study results are used in a way that will have the most benefit to other people while ensuring your rights are safeguarded.
You can find out more about how your personal data is used by contacting the Active Brains research team at the University of Southampton by emailing email@example.com, or by contacting the University of Southampton Data Protection Officer by emailing firstname.lastname@example.org.
Who is responsible for my data?
The University of Southampton is responsible for your data (the official name for this role is ‘data controller’). This means that the University of Southampton is responsible for looking after your personal data and using it properly. You can contact the University of Southampton about the data it keeps about you by emailing the Active Brains research team on email@example.com.
Global Initiative Limited, a web software development company, is working with the University of Southampton to run this research study by collecting and securely storing your personal data from the Active Brains website on behalf of the University of Southampton (the official name for this role is ‘data processor’).
Is my data kept private and secure?
The University of Southampton has a legal duty to keep information about you confidential. There are strict codes of conduct in place to keep your information safe. The University of Southampton abides by the Data Protection Act 2018, the EU General Data Protection Regulation (GDPR), and the University Data Protection Policy. You can read the University of Southampton’s Data Protection Policy here: www.calendar.soton.ac.uk/sectionIV/data-protection.html. The University’s privacy notice for research participants provides more information on how the University of Southampton collects and uses your personal data when you take part in one of our research projects and can be found by clicking here.
The University of Southampton will keep your personal data for a minimum of 10 years after the research study has finished.
What are my rights?
You have the right to contact the University of Southampton to ask for the following: to be informed about the data held about you, to access the data held about you, to have the data held about you edited or updated where it is inaccurate or incomplete, to request that data held about you be erased, to request that the use of your data be restricted, and to object to the use of your data.
Your rights relating to erasure of your data and to objecting to the use of your data are, however, limited under the EU General Data Protection Regulation (GDPR). This is because your data is used for scientific research purposes and needs to be managed in specific ways in order for the research study’s results to be concluded in a reliable and accurate fashion.
Please contact the Active Brains research team by emailing firstname.lastname@example.org if you would like to make a rights request.
What is the lawful basis for collecting, storing, and using my data?
Data protection law requires us to have a valid legal reason (‘lawful basis’) to process and use your Personal data. The lawful basis for processing personal information in this research study is for the performance of a task carried out in the public interest. Personal data collected for research will not be used for any other purpose.
Are you using special category data about me?
Special category data regarding your health will be used as part of this research study. This use of special category data satisfies the condition for ‘scientific research purposes’, as set out by data protection laws.
How can I raise a complaint?
If you would like to raise a complaint on how your personal data is being handled, you can contact the University of Southampton’s Data Protection Officer who will investigate the matter.
The Data Protection Officer
University of Southampton, Highfield
Southampton, SO17 1BJ.
You may also contact the University’s Research Integrity and Governance Team on email@example.com. If you are not satisfied with the response, or if you believe that your personal data is handled in a way that is not lawful, you can complain to the Information Commissioner’s Office (ICO). See their website at ico.org.uk.
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