At Dementia UK, we value your privacy and are committed to protecting your personal data in accordance with the General Data Protection Regulation (GDPR). This notice outlines how we will collect, use, and store your data in relation to your participation in our supporter research focus groups.
Please note that as a previous supporter of Dementia UK, we process your personal information in accordance with our organisational privacy policy too: Privacy Policy – Dementia UK
Data Collection
We will collect your name, email address, and phone number based on your voluntary provision of this information.
During the focus group, we will record the session for transcription and analysis purposes, subject to your explicit consent.
Lawful Basis for Processing
We will process your personal data based on your consent, which you may withdraw at any time.
The processing is necessary for the legitimate interests of Dementia UK in conducting supporter research to improve our services and initiatives.
Data Use
Your personal data will be used to communicate with you about the research, confirm your participation, and arrange payment of the incentive.
The recorded focus group session will be transcribed and analysed by an external research partner assisting with the analysis who are bound by strict confidentiality agreements.
Anonymised findings from the research may be shared internally within Dementia UK to inform our strategies and initiatives.
Data Access
Access to your personal data will be limited to the Dementia UK research team and relevant staff members involved in organising the focus groups, all of whom are trained in data protection practices.
We may share anonymised data (without any personally identifiable information) with external research partners or agencies assisting with the analysis who are bound by strict confidentiality agreements.
Data Retention
Your personal data will be retained for the duration of the research project, after which it will be securely deleted.
Recorded focus group sessions will be retained until the completion of the research project for reference and analysis purposes, and then securely deleted.
Your Rights
As a data subject, you have the following rights under GDPR:
- The right to access your personal data
- The right to rectify inaccurate personal data
- The right to request erasure of your personal data
- The right to restrict processing of your personal data
- The right to data portability
- The right to object to processing of your personal data
- The right to withdraw consent at any time
- To exercise any of these rights, please contact [insert appropriate title] at [contact email/phone].
Informed Consent
By completing the survey and agreeing to participate in the focus group, you consent to the collection, use, and storage of your personal data as described in this privacy notice. Your participation is voluntary, and you may withdraw your consent at any time.
If you have any questions or concerns about how your data will be handled, please contact our Data Protection Officer at dataprotectionofficer@dementiauk.org or write to:
Data Protection Officer
Dementia UK
7th Floor
One Aldgate
London
EC3N 1RE