Minder App Privacy and GDPR

The Minder Dementia Care app is only accessible to participants in the UK DRI Care Research & Technology Centre’s Minder study. The study is a collaboration between Imperial College London, University of Surrey, Surrey & Borders NHS Foundation Trust.

All users give informed consent according to the study’s research ethics approval. This study has been reviewed by London – Surrey Borders Research Ethics Committee. 

IRAS 257561

Contact details

For questions about accessing the app, please refer to the Minder Monitoring Team:

Tel: 0800 138 65544
Email: minder@sabp.nhs.uk

Alternatively, you can contact Surrey and Border Partnership NHS Foundation Trust’s Data Protection Officer at: dpo@sabp.nhs.uk. If you are still not satisfied with the outcome, you can write to: The Information Commissioner, Wycliffe House, Water Lane, Wilmslow, Cheshire SK9 5AF. Telephone: 0303 123 1113: Website: www.ico.gov.uk 

The UK DRI Care Research & Technology Centre at Imperial College London, and Surrey and Border Partnership NHS Foundation act as joint data controllers for this study.

Data collected through the Minder App

Well-being questionnaire – The app invites the user to complete multiple choice well-being questions on a daily / weekly basis. We ask about the mood, and quality of sleep of both the person with study participant and primary caregiver.

Diary – the app include a feature to allow the user to optionally record diary observations. These may be kept private to the user for their own reference, or shared with the Research programme’s monitoring team, and clinical staff.

Contact information – users can update their contact information (phone numbers and email addresses) through the app, which are shared with the Research programme’s monitoring team so that they can support users during the study.

Pseudo-anonymised data collected through the app will be shared with researchers within Imperial College London and University of Surrey in accordance with the ethics approval for the Minder study.

Analytics – we will use ony anonymised analytics to understand how the app is being used an how it can be improved. This will done by seeing how often features of the app are used by how many times the app requests different types of data from our database (using APIs).

Lawful basis for processing personal data

The basis for processing data is via informed consent, given when participants are enrolled in the Minder study.

Surrey and Borders Partnership NHS Foundation Trust is an official authority with a public interest to undertake research under the guidance of the department of Health and data protection law. They are based in the UK and will act as the data controller for the study. 

How we process personal data

Data collected electronically (e.g. through the devices in your home) will be stored in secure access-controlled computer databases that can only be accessed by members of the research team.  Access to the data is controlled via a process of training for researchers and a ‘Research Passport’ system that verifies suitability of researchers.

When study has finished, the information collected through the devices will be kept anonymous so that it cannot be linked back to you, and shared with other researchers (e.g., via UK bio-bank or UK Health Data Research Centre) to help them answer other research questions.  

How long we will keep personal data

Surrey and Borders Partnership NHS Foundation Trust will be responsible for retaining anonymised and non-anonymised data from this study for a minimum of 10 years after the study end and must obtain the permission of the chief investigator if they wish to delete or archive data.  

Data subject rights

Individuals have the following rights under GDPR legislation:

• Right to be informed: organisations must tell individuals what data of theirs is being collected, how it’s being used, how long it will be kept and whether it will be shared with any third parties.
• Right of access: individuals have the right to request a copy of the information that an organisation holds on them.
• Right of rectification: individuals have the right to correct data that is inaccurate or incomplete.
• Right to be forgotten: in certain circumstances, individuals can ask organisations to erase any personal data that is stored on them.
• Right of portability: individuals can request that an organisation transfers any data that it holds on them to another company.
• Right to restrict processing: individuals can request that an organisation limits the way it uses personal data.
• Right to object: individuals have the right to challenge certain types of processing, such as direct marketing.
• Rights related to automated decision making, including profiling: individuals can ask organisations to provide a copy of its automated processing activities if they believe the data is being processed unlawfully. You should also remind individuals that they are free to exercise their rights and explain how they can do this.

Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible. 

This policy was updated on 17 August 2021