Privacy Notice

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.

The categories of personal data we process for these purposes 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

• 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)

We keep personal data collected during recruitment for six months if you do not go on to participate in GlobalMinds. If you do participate, we keep the personal data collected for participation for five years after the research ends.

We would like to keep in touch with you about opportunities in addition to GlobalMinds. This is separate to the correspondence we need to send to you as part of your participation 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 categories of personal data we process for this purpose includes:

• 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 will keep your personal data for these purposes until you withdraw your consent. We keep your contact preferences permanently so that we do not send you communications you have not consented 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.

We have a legitimate interest into responding to enquiries and complaints, and to use these to support and improve the GlobalMinds research programme.

The categories of personal data we process for this purpose includes:

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

• Other personal data necessary to handle your enquiry or complaint, whether provided directly by you or from information we already hold

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

Throughout the recruitment, onboarding, and participation in GlobalMinds, we use cookies and information about the electronic devices used to access the GlobalMinds websites to monitor recruitment pathways and recruitment numbers. When we use your data for this purpose we rely on the lawful basis of consent.

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 lack mental capacity, and is usually a family member or someone interested in the person’s wellbeing. Researchers speak with a consultee to understand whether the person without capacity should take part in the research, and what the person’s wishes might be if they were able to decide for themselves.

When we use personal data for this purpose, we do so because we have a legal obligation to comply with section 32 of the Mental Capacity Act 2005.

The categories of personal data we process for this purpose includes:

• 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 process personal data about staff employed by organisations who recruit participants on our behalf.

When we use personal data for this purpose we rely on the lawful basis of legitimate interests. Our legitimate interest is to ensure that we can communicate with research staff, ensure staff are properly trained, fulfil contractual arrangements with these organisations and effectively conduct GlobalMinds.

The categories of personal data we process for this purpose 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.

• Access to personal data: You have the right to request a copy of the personal data we hold about you, and other information about how we use your personal data. Please include enough information to identify yourself and help us locate your data.

• Right to rectification (correction): If any personal data we hold is inaccurate or incomplete, you can ask us to correct it. You may also use the account settings in the GlobalMinds Hub to update some of your information directly, without the need to contact us.

• Right to withdraw consent: Where we rely on your consent to process your data, you can withdraw it at any time. To opt out of marketing, use the unsubscribe link in our emails or contact us with your preferences.

• Right of erasure (right to be forgotten): You may request that we delete your personal data if you believe it is no longer needed. This right is not absolute, and we will assess each request individually. If we cannot delete your data, we will explain why.

• Right to data portability: You can request your personal data in a digital format to transfer to another organisation. This applies to data you provided to us with your consent.

• Right to restrict processing: In certain cases, you can ask us to suspend the processing of your personal data. We may still store the data, but any other use will require your consent. However, we may still process your data if it is necessary for legal proceedings, to safeguard the rights of others, or for reasons of important public interest.

• Right to object to processing: You can object to our processing of your data where we rely on legitimate interests. We may continue processing if we have compelling reasons or need the data for legal claims. We will explain our justification if we proceed.

FAO Information Governance 
Akrivia Health
8 Hollybush Row 
Oxford
OX1 1JH 

You can also contact the ICO for further information or to make a complaint:
Information Commissioner’s Office 
Wycliffe House
Water Lane 
Wilmslow
Cheshire  
SK9 5AF