Privacy Notice

We don’t have your details. NHS England sent the letter on our behalf and hasn’t shared your information with us.

Read our FAQs to find out more, including how to opt out.

We use your personal data to check your eligibility for the GlobalMinds programme and, if you take part, to carry out the research. This includes identifying you, communicating with you, and linking your questionnaire data with health records and biological samples. Our lawful basis for processing is legitimate interests, and when we use health data, we do so for scientific research in the public interest.

Our legitimate interest is to support research that helps scientists better understand the relationship between genetics and mental health, so they can develop more personalised treatments that improve wellbeing and reduce the overall impact of mental illness on society.

To protect your privacy, we remove or change details that could identify you, such as your name, contact details and date of birth, before your data is used for research. Only a small number of authorised staff can link it back to you, for example if you decide to leave the study or we have a safety concern.

The types of personal data we use include:

• Identification details to identify you and link your data with health records (such as name, date of birth, NHS number, study ID)

• Contact details to communicate with you and send sample kits (such as email address, phone number, home address)

• Health and demographic data to check eligibility and achieve the objectives of the research (such as diagnosis, ethnicity). We obtain some of this data from the NHS Trust responsible for your care and, if your GP surgery is part of its network, from Optimum Patient Care Ltd

• Questionnaire data to conduct the research and achieve its objectives (such as questionnaires, cognitive and follow-up assessments)

• Biological sample and analysis data to link samples to participants and conduct the research (such as bio sample identifiers, biomarker analysis results, genomic files)

  If you do not go on to take part, we keep the data collected during recruitment for six months. If you do take part, we keep your data for five years after the research ends.

We would like to keep in touch with you about other opportunities beyond GlobalMinds. This is separate from the messages we send you as part of taking part in GlobalMinds.

These communications include updates about Akrivia Health, opportunities to take part in trials and studies, and opportunities to join our patient and public participation network.

When we use your data for this purpose, we rely on your consent. We ask for your explicit consent to use your health information so that we only send communications that are relevant to you.

The types of personal data we use include:

• Identification and contact details to communicate with you

• Health data so that we only send relevant updates

• Contact preferences to record which types of updates you have consented to receive

  We keep your data for this purpose until you withdraw your consent. We keep a permanent record of your contact preferences so that we do not send you anything you have not agreed to.

We use your personal data if you contact us with a question about GlobalMinds, to make a complaint, or if you have a safety or safeguarding concern. Our lawful basis for processing is legitimate interests.

Our legitimate interest is to respond to enquiries and complaints, and to use them to improve GlobalMinds.

The types of personal data we use include:

• Identification and contact details to communicate with you and to handle your enquiry or complaint

• Any other data we need to handle your enquiry or complaint, whether you give it to us or we already hold it

  We keep a record of enquiries for six months after our last contact with you. Information relating to complaints and concerns is kept for five years after the research ends.

We use cookies and information about the devices you use to visit the GlobalMinds websites to understand how people find and join GlobalMinds. We rely on your consent for this.

Where someone does not have the mental capacity to decide for themselves whether or not to participate, we may need to seek the views of a consultee. A consultee is someone who knows and cares for a person who lacks mental capacity, and is usually a family member or someone interested in the person’s wellbeing. Researchers ask the consultee whether the person should take part, and what the person would want if they could decide for themselves.

We use this data because we have a legal obligation under section 32 of the Mental Capacity Act 2005.

The types of personal data we use include:

• Identification and contact details to communicate with you

• Your views about whether an individual would wish to take part in research

  We keep this personal data for five years after the research ends.

We use personal data about staff at organisations that recruit participants for us.

Our lawful basis is legitimate interests. Our legitimate interest is to communicate with research staff, make sure they are properly trained, meet our contracts with their organisations and run GlobalMinds effectively.

The types of personal data we use include:

• Identification and corporate contact details to identify and communicate with you

• Professional information such as job role and employer

• User credentials to give you access to the GlobalMinds research and training platforms

• Training records to ensure research staff are adequately trained

  We keep this personal data for five years after the research ends.

We store personal data for GlobalMinds in secure data centres in the UK.

Some of the service providers who help run those data centres are based outside the UK. This includes Microsoft, which is based in Ireland, and Amazon Web Services, which is based in Luxembourg.

Under these arrangements, your personal data stays in the UK, and our contracts require these providers to keep it there.

However, because these service providers are based outside the UK, UK data protection law treats this as an international transfer. We rely on the UK’s adequacy regulations for Ireland and Luxembourg. This means that the UK has recognised these countries as providing an adequate level of protection for personal data.

In one case, your data may leave the UK. GENEWIZ, which carries out DNA sequencing for us, normally does this in the UK. If there is an operational need, it may also use its own laboratories in Germany. Only your biological sample and its coded sample identifier would be sent there, not your name or contact details. The UK has also recognised Germany as providing an adequate level of protection for personal data.

• Right of access: You can ask for a copy of the personal data we hold about you and information about how we use it. Please tell us enough to identify you and find your data.

• Right to correction: You can ask us to correct any data that is wrong or incomplete. You can also update some details yourself in your GlobalMinds Hub account settings.

• Right to withdraw consent: Where we use your data because you gave consent, you can withdraw it at any time. To stop receiving updates from us, use the unsubscribe link in our emails or contact us.

• Right to deletion: You can ask us to delete your personal data. We will consider each request, but we cannot always delete data, for example where we need it for the research. If we cannot delete it, we will explain why.

• Right to data portability: You can ask for a digital copy of the data you gave us with your consent, so you can move it to another organisation.

• Right to restrict processing: In some cases, you can ask us to pause using your data. We can still store it, but will only use it with your consent, for legal claims, to protect other people’s rights, or for important public interest reasons.

• Right to object to processing: You can object to us using your data where we rely on legitimate interests. We may continue if we have compelling reasons or need the data for legal claims, and we will explain why.

Information Governance
Akrivia Health
8 Hollybush Row 
Oxford
OX1 1JH 

Information Commission
4th Floor, No.3 Circle Square
5 Hawkshaw Street
Manchester 
M1 7BL

Contact the ICO for advice or to make a complaint on their website.