This privacy notice was last updated on 17 April 2025.
Who are we?
GlobalMinds is a research programme run by Akrivia Health, which is the trading name of Cristal Health Ltd (Company Number 11892096). Akrivia Health is the data controller, which means we decide what data is used and how for the purposes of the GlobalMinds study. We are registered with the Information Commissioner’s Office (ICO), ZA522852.
This Privacy Notice tells you about how we use your personal data for the purpose of the study. Personal data is data that relates to you, and which can be used to identify you, either by itself or by combining it with other data. When we talk about ‘we’ or ‘us’ we’re talking about Akrivia Health.
If you have any questions at all, please contact DPO@akriviahealth.com.
Study Participants
A research study like GlobalMinds uses lots of personal data, to try and explain how we use what data for what purpose we have put this into a table. Article 6 of the UK GDPR requires organisations to have a lawful basis for processing personal data, and an additional lawful basis from article 9 when processing special category data (like health). We have included this information in the table to explain when we rely on a lawful basis, including the legal references in case you would like to explore the legislation yourself.
If you want to know more about lawful bases for processing you can find information on the ICO’s website.
Device information
Throughout the recruitment, onboarding, and participation in GlobalMinds, we use information about your electronic devices used to access websites and the GlobalMinds Hub.
Our lawful bases for processing this information are;
- UK GDPR Article 6(1)(a) – Consent
- UK GDPR Article 9(2)(a) – Explicit consent
What personal data is used? | What is the data used for? | How long do we keep data for? |
Cookies, device information | We use this to monitor recruitment pathways, recruitment numbers, and to make it easier for users to access the GlobalMinds Hub. | 5 years after the study has been completed. |
The study - recruitment
The information below explains how we use personal data as part of the recruitment process. This includes determining if you are eligible for taking part in the study.
Our lawful bases for processing this data are;
- UK GDPR Article 6(1)(f) – Legitimate Interest
- UK GDPR Article 9(2)(j) – Research
- Data Protection Act 2018, schedule 1, paragraph 4
Our legitimate interest is that processing of this data will be used to fund research that will hopefully allow scientists to understand the links between genetics and psychiatry to be able to create precision psychiatry treatments that benefit both individuals’ health, but also the health of the population as a whole. This has a knock on benefit to reducing the disease burden cost while increasing national productivity. A copy of our full legitimate interests assessment (LIA) is available on request, please email DPO@akriviahealth.com.
What personal data is used? | What is the data used for? | How long do we keep data for? |
Full name | We use this data to identify you and communicate with you. | 6 months. |
Date of birth | We use this data to identify you and to work out if you are eligible for the study. | 6 months. |
Email address | We use this data to communicate with you. | 6 months. |
Healthcare provider | We use this data to work out if you are eligible for the study. | 6 months. |
NHS number | We use this data to work out if you are eligible for the study. | 6 months. |
GM Hub user | We use this data to identify user on the GlobalMinds Hub. | 6 months. |
The study - participation
The information below explains how personal data is used for the study.
Our lawful bases for processing this data are;
- UK GDPR Article 6(1)(f) – Legitimate Interest
- UK GDPR Article 9(2)(j) – Research
- Data Protection Act 2018, schedule 1, paragraph 4
Our legitimate interest is that processing of this data will be used to fund research that will hopefully allow scientists to understand the links between genetics and psychiatry to be able to create precision psychiatry treatments that benefit both individuals’ health, but also the health of the population as a whole. This has a knock on benefit to reducing the disease burden cost while increasing national productivity. A copy of our full legitimate interests assessment (LIA) is available on request, please email DPO@akriviahealth.com.
What personal data is used? | What is the data used for? | How long do we keep data for? |
Full name | We use this data to identify you. | 5 years after the end of the study. |
Date of birth | We use this data to identify you. | 5 years after the end of the study. |
Email address | We use this data to communicate with you. | 5 years after the end of the study. |
Home address | We use this data to communicate with you, and to send you sample kits. | 5 years after the end of the study. |
NHS number | We use this data to identify you and to enable data linkage with electronic health records. | 5 years after the end of the study. |
Diagnosis | We also use this data for the achieving the objectives of the study. | 5 years after the end of the study. |
Ethnicity | We use this data for the achieving the objectives of the study. | 5 years after the end of the study. |
Study questionnaire | We use this data for the achieving the objectives of the study. | 5 years after the end of the study. |
Cognitive assessment | We use this data for the achieving the objectives of the study. | 5 years after the end of the study. |
Follow-up assessment | We use this data for the achieving the objectives of the study. | 5 years after the end of the study. |
Bio-sample (blood/saliva) identifiers | We use this data to identify which bio-sample relates to which participant. | 5 years after the end of the study. |
Study ID | We use this data to identify individual study participants. | 5 years after the end of the study. |
Research Hub ID | We use this data to identify individual users of the Akrivia Health Research Hub. | 5 years after the end of the study. |
Genomic files | We use this data for the achieving the objectives of the study. | 5 years after the end of the study. |
Biomarker analysis results | We use this data for the achieving the objectives of the study. | 5 years after the end of the study. |
BRC ID | We use this data to identify you and to enable data linkage with electronic health records. | 5 years after the end of the study. |
Contact preferences
We would like to keep in touch with you about opportunities in addition to GlobalMinds. This includes;
- Updates about Akrivia Health,
- Opportunities to participate in trials and studies,
- Opportunities to participate in our patient and public participation network.
Our lawful bases for processing this information are;
- UK GDPR Article 6(1)(a) – Consent
- UK GDPR Article 9(2)(a) – Explicit consent
What personal data is used? | What is the data used for? | How long do we keep data for? |
Name | We use this data to contact you. | We will keep this data until you withdraw consent. |
Email address | We use this data to contact you. | We will keep this data until you withdraw consent. |
Postal address | We use this data to contact you. | We will keep this data until you withdraw consent. |
Contact preferences | We use this data to record whether you have agreed to updates, and which ones. | We will keep this data indefinitely. |
Enquiries, complaints, and investigations
If you contact us with a question about the study or a complaint about the study, we will use this data to respond. It will not be used as part of the study data.
Our lawful bases for processing this data are;
- UK GDPR Article 6(1)(f) – Legitimate Interest
- UK GDPR Article 9(2)(j) – Research
- Data Protection Act 2018, schedule 1, paragraph 4
Our legitimate interest is that processing of this data will be used to fund research that will hopefully allow scientists to understand the links between genetics and psychiatry to be able to create precision psychiatry treatments that benefit both individuals’ health, but also the health of the population as a whole. This has a knock on benefit to reducing the disease burden cost while increasing national productivity. A copy of our full legitimate interests assessment (LIA) is available on request, please email DPO@akriviahealth.com.
What personal data is used? | What is the data used for? | How long do we keep data for? |
Enquiry data | If you make an enquiry we will use the data you provide to respond to it. | 6 months from our last contact with you. |
Complaint data | If you make a complaint we will use this data to investigate and respond. | 5 years after the end of the study. |
Safeguarding & investigations | We use this data to investigate and respond to safeguarding concerns. | 5 years after the end of the study. |
Do you share my data?
We share your personal data with organisations who work on our behalf, known as data processors. We tell those organisations what to do with the data, and have contracts in place to govern this relationship.
Organisation | What is the role of the organisation? |
Amazon Web Service (AWS) | Akrivia use AWS for hosting infrastructure, such as processing genomic samples, and for linking anonymised data. |
Kaizen Bioservces | Kaizen Bioservices process data for the purpose of co-ordinating the bio-sample collection process. |
Global Initiative | Global Initiative hosts the GlobalMinds Hub. |
Heim Health | Heim Health provide remote phlebotomy services. |
UK Biostores | UK Biostores store bio-samples before DNA are extracted and sequenced. |
Eurofins | Eurofins provide DNA sequencing services. |
Mythic Beast | Mythic Beast provide data storage services for Global Initiative. |
MaxAPEX | MaxAPEX provide data storage services for Kaizen. |
NHS Trusts | NHS Trusts will work on our behalf to identify and recruit individuals to GlobalMinds. |
Do you use automated decision-making?
We use automated decision-making during recruitment to determine whether you meet the eligibility criteria for GlobalMinds [link to the GlobalMinds website]. This process uses data you have provided (NHS number, data of birth, and diagnosis). The decision-making replicates what a human would do. We do not think that this processing has a legal or similarly significant effect on you.
What are my rights?
Under data protection law you have a number of rights which are detailed below. Some of these only apply in specific circumstances and are qualified in several respects by exemptions in data protection legislation. We will advise you in our response to your request if we are relying on any such exemptions. All requests should be directed to DPO@akriviahealth.com
Access to personal data
You have a right to request a copy of the personal data that we hold about you. You should include adequate data to identify yourself and such other relevant data that will reasonably assist us in fulfilling your request. Your request will be dealt with as soon as possible.
Right to rectification (correction)
You can request us to rectify and correct any personal data that we are processing about you which is incorrect. We provide you with account settings and tools to access the data associated with your account.
Right to withdraw consent
Where we have relied upon your consent to process your personal data, you have the right to withdraw that consent. To opt out of marketing, you can use the unsubscribe link found in the email marketing communication you receive from us. For other marketing preferences you can contact us, providing details of services or marketing that you wish to opt out of.
Right of erasure (right to be forgotten)
You can request us to erase your personal data under certain circumstances, for example if you believe that we no longer need to retain your data. This is not an absolute right, and we need to carefully consider each case on its own merits as there may be good reasons why we are not able to erase your data. If we are not able to honour your request we will explain why.
Right to data portability
This right allows you to obtain your personal data in an electronic format, where you have provided data to us with your consent, or where the data was necessary for us to provide you with our services or employment. You can request that the data be given in a format which enables you to transfer that personal data to another organisation. You may have the right to have your personal data transferred by us directly to the other organisation, if this is technically feasible.
Right to restrict processing
You have the right in certain circumstances to request that we suspend our processing of any or all your personal data. Where we suspend our processing of your personal data we will still be permitted to store your personal data, but any other processing of this data will require your consent, subject to certain exemptions.
Right to object to processing
You have the right to object to our use of your personal data which is used where we feel that we have legitimate interest. However, we may continue to process your personal data, despite your objection, where there are compelling legitimate grounds to do so, or we need to process your personal data in connection with any legal claims. The grounds for continuing to do so will be communicated to you.
Getting in touch
Should you have any queries about the how your data is used, including a complaint for our data protection officer, then please email DPO@akriviahealth.com, or write to us at:
FAO Information Governance
Akrivia Health
c/o Clarendon House, Cornmarket Street,
Oxford, United Kingdom,
OX1 3HJ
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
Phone: 0303 123 1113 (local rate) or 01625 545 745 if you prefer to use a national rate number.
Contact the ICO for advice or to make a complaint on the ICO website.
Consultees
What is a Consultee?
A consultee is someone who cares for an individual who lacks mental capacity, or is interested in that person’s welfare. They cannot be paid for this. Researchers must consult with a consultee to understand whether individual without capacity should take part in the research, and about what that individual’s feelings about taking part might be if they had capacity.
How do you use data?
Where necessary we will seek and obtain the opinions of consultees where individuals lack mental capacity.
Our lawful bases for processing this data are;
- UK GDPR Article 6(1)(c) – Complying with a legal obligation (s32 of the Mental Capacity Act 2005).
- UK GDPR Article 9(2)(j) – Research
- Data Protection Act 2018, schedule 1, paragraph 4
What personal data is used? | What is the data used for? | How long do we keep data for? |
Full name | We use this data to identify you. | 5 years after the end of the study. |
Email address | We use this data to communicate with you. | 5 years after the end of the study. |
Opinions | We use this data to understand your views about whether an individual would wish to take part in research. | 5 years after the end of the study. |
NHS Researchers
How do we use data?
We process data of NHS researchers working for NHS organisations who recruit participants on our behalf.
Our lawful bases for processing this data are;
- UK GDPR Article 6(1)(f) – Legitimate Interest
Our legitimate interest is that the processing of the data enables the fulfilment of contracts with the NHS organisations working on our behalf, and the undertaking of the study.
What personal data is used? | What is the data used for? | How long do you keep data for? |
Full name | We use this data to identify you. | 5 years after the end of the study. |
Email address | We use this data to communicate with you. | 5 years after the end of the study. |
User credentials | We use this data to give you access to the GlobalMinds Hub and Trainer Central. | 5 years after the end of the study. |
Training records | We use this data to monitor training provided to researchers. | 5 years after the end of the study.
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Do you share my data?
We share your personal data with organisations who work on our behalf, known as data processors. We tell those organisations what to do with the data, and have contracts in place to govern this relationship.
Organisation | What is the role of the organisation? |
Microsoft | We use Microsoft for communication and document storage. |
NHS Trusts | NHS Trusts will work on our behalf to identify and recruit individuals to GlobalMinds. |
Trainer Central | Hosts our training courses for researchers. |
