Keeping your data safe
The internet has changed our lives in countless positive ways, and is a vital tool in research, however there are recognised risks around collection and storage of personal data. It is Great Minds commitment to take all precautions possible to protect your data. We understand that volunteers expect the highest standards of data security and below we describe how we keep your personal and health data safe.
Great Minds members’ personal data.
We will not share or sell identifiable personal data to any external organisation without the consent of individual members.
Members’ personal details (name, address, email, telephone) will never be shared with other studies or organisations without the member’s explicit consent. We allow only staff responsible for managing membership, and requests for trials or studies volunteers, to access members’ contact details. Once a member agrees to join a trial or study, Great Minds will share their details with the researcher on that specific study or trial.
Members' health data is ‘pseudoanonymised’, which means that a member’s name is replaced by numeric codes so that the data cannot be identified as belonging to the member. When researchers search for members to invite to a study they use only pseudoanonymised data to filter their choice. If they wish to invite a volunteer to join their trial they have to put in a request through the Great Minds team to match the pseudoanonymised numeric code with an individual.
How will researchers use my data
Researchers use information from your health study and the Great Minds' online tasks to select volunteers for trials based on the perceived risk of developing dementia in later life. However, it is important to understand that factors that define risk are not the same as a cause of dementia. For example, diabetes is a risk factor for dementia, but not all people with diabetes develop dementia.
Great Minds ensures that members are not informed about their risk level. To avoid unintentional disclosure of risk we only work with high quality dementia studies that include volunteers with different risk levels in each study.
Securing your information
Great Minds securely holds all member data on DPUK’s IT infrastructure. This uses the UK Secure e-Research Platform (UKSeRP) which operates to the highest accredited Information Security Management System (ISMS). Members' names and contact details are stored in an encrypted database and all data and backups remain within UKSeRP secure infrastructure.
Cambridge Cognition and Mezurio provide online and smartphone memory and mood assessments for Great Minds. The online memory and mood data is pseudoanonymised before it is stored. Data collected by Mezurio is encrypted and sent to a secure server within the University of Oxford Big Data Institute, maintained at a standard suitable for GDPR compliant clinical trials. Cambridge Cognition are part of the secure UKSeRP secure infrastructure.
To comply with data regulations and standards, authorised representatives from the University of Oxford and hosting institutions responsible for data procedures will be given access for monitoring and/or auditing purposes.
What happens to your data if you leave Great Minds
Great Minds members are free to withdraw at any time and for any reason. If a member withdraws, all personal data will be removed from the servers. Members can also request to be completely removed from Great Minds, in which case all their health data collected by the Great Minds register is also deleted.