GDPR Privacy notice

CHARIOT: Cognitive Health in Ageing Register: Investigational, Observational and Trial studies in dementia research

What is the purpose of this document?

Imperial College of Science, Technology and Medicine (the “College” or “Imperial”) is committed to protecting the privacy and security of your personal information.

This privacy notice describes how we collect and use personal information about you during and after your relationship with us, in accordance with the applicable data protection legislation (the Data Protection Act 2018, the General Data Protection Regulations (the “GDPR”) and the College’s Data Protection Policy.

The College is a "data controller". This means that we are responsible for deciding how we hold and use personal information about you. We are required under data protection legislation to notify you of the information contained in this privacy notice.

This notice applies to current CHARIOT Register and research studies participants. This notice does not form part of any contract of employment or other contract to provide services. We may update this notice at any time.

It is important that you read this notice, together with any other privacy notice we may provide on specific occasions when we are collecting or processing personal information about you, so that you are aware of how and why we are using such information.

Data protection principles

We will comply with data protection law. This says that the personal information we hold about you must be:

1. Used lawfully, fairly and in a transparent way.
2. Collected only for valid purposes that we have clearly explained to you and not used in any way that is incompatible with those purposes.
3. Relevant to the purposes we have told you about and limited only to those purposes.
4. Accurate and kept up to date.
5. Kept only as long as necessary for the purposes we have told you about.
6. Kept securely.

The kind of information we hold about you

Personal data, or personal information, means any information about an individual from which that person can be identified. It does not include data where the identity has been removed (anonymous data).

There are "special categories" of more sensitive personal data which require a higher level of protection.

We may collect, store, and use the following categories of personal information about you:

• Personal contact details such as full name, title, addresses, landline telephone numbers, mobile telephone numbers and personal email addresses
• Date of birth
• Gender
• NHS Number 
• Study recruitment / activity information 
• Proof of personal identification (including copies of passports, driving licences, bus pass).

We may also collect, store and use the following "special categories" of more sensitive personal information:

• Information about your ethnicity.
• GP details
• Information about your health, including any medical condition, health and sickness records
• Genetic information and biometric data

How is your personal information collected?

We collect the personal information about you directly on the phone or in person. Where you have consented, we may sometimes collect additional information from third parties including your GP.

How we will use information about you and the legal basis for processing your data under the GDPR

We will only use your personal information when the law allows us to. Most commonly, we will use your personal information in the following circumstances:

1. Where we need to comply with a legal obligation.
2. Where it is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in us.
3. Where it is necessary for our legitimate interests (or those of a third party) and your interests and fundamental rights do not override those interests.
4. Where it is necessary in order to protect your vital interests or someone else’s vital interests.
5. Where you have consented to the processing.

Situations in which we will use your personal information

We need all the categories of information in the list above (see The kind of information we hold about you) primarily to allow us to perform our management of the CHARIOT Register and our studies through your participation [*] and to enable us to comply with legal obligations [**]. In some cases we may use your personal information to pursue legitimate interests of our own or those of third parties [***], provided your interests and fundamental rights do not override those interests. The situations in which we will process your personal information are listed below. We have indicated by [asterisks] the purpose or purposes for which we are processing or will process your personal information, as well as indicating which categories of data are involved.

• To provide you with the information and services that you request from us in relation to the CHARIOT Register and research studies for dementia prevention and/or healthy ageing.
• To contact you in relation to your potential or actual participation in the CHARIOT Register and research studies.
• To ensure we meet any and all legal obligations with regards to the service we provide to you for the duration of your participation in the CHARIOT Register and research studies.
• To administer and fulfil requirements as agreed in the Participant Information Sheets and Informed Consent Forms and any related terms and conditions.
• To notify you about changes to our service.
• Making a decision about e.g. your recruitment or appointment.
• Determining the terms on which you work for us.
• Conducting recruitment performance reviews, managing performance and determining performance requirements.
• Making decisions about your continued participation.
• Complying with health and safety obligations.
• To ensure network and information security, including preventing unauthorised access to our computer and electronic communications systems and preventing malicious software distribution.
• To conduct data analytics studies to review and better understand participant retention and attrition rates.
• To ensure the information we hold about you is up to date and accurate.
• To ensure that content from our site is presented in the most effective manner for you and your computer or mobile device.
• To provide you with relevant updates of research findings in dementia and ageing research, our own research activities and opportunites to get involved by email, phone or post where you have consented to receive this information.
• Equal opportunities monitoring.

Some of the above grounds for processing will overlap and there may be several grounds which justify our use of your personal information.

If you fail to provide personal information

If you fail to provide certain information when requested, we will not be able to process your consent form and/or provide the services you have requested.

Change of purpose

We will only use your personal information for the purposes for which we collected it, unless we reasonably consider that we need to use it for another reason and that reason is compatible with the original purpose. If we need to use your personal information for an unrelated purpose, we will notify you and we will explain the legal basis which allows us to do so.

Please note that we may process your personal information without your knowledge or consent, in compliance with the above rules, where this is required or permitted by law.

How we use particularly sensitive personal information

"Special categories" of particularly sensitive personal information require higher levels of protection. We need to have further justification for collecting, storing and using this type of personal information. We may process special categories of personal information in the following circumstances:

1. In limited circumstances, with your explicit written consent.
2. Where the processing is necessary to protect your vital interests (or those of another person) where you are incapable of giving consent. 
3. Where the processing is carried out in the course of our legitimate activities as a charity, with respect to our own members, former members, or persons with whom we have regular contact in connection with our purposes.
4. Where the processing relates to personal data which have been manifestly made public by you.
5. Where the processing is necessary for the establishment, exercise or defence of legal claims, or for courts acting in their judicial capacity.
6. Where the processing is necessary for reasons of substantial public interest, and occurs on the basis of a law that is, inter alia, proportionate to the aim pursued and protects your rights as a data subject.
7. Where the processing is necessary for reasons of public interest in the area of public health (e.g. ensuring the safety of medicinal products).
8. Where the processing is necessary for archiving purposes in the public interest, for historical, scientific, research or statistical purposes, subject to appropriate safeguards.

Our obligations

We will use your particularly sensitive personal information in the following ways:

• We will use information relating to your health and research participation, which may include results of any assessments and study procedures, or information provided by you to us, to successfully carry out our research and ensure your safety.
• We will use information about your physical or mental health, or disability status, to ensure your health and safety in the research site and to successfully carry out our research and ensure your safety.
• We will use information about your ethnic origin, to ensure meaningful equal opportunity monitoring and reporting of the CHARIOT Register and studies, and this will be used for research purposes only.
• We will use medical, genetic information and biometric data to conduct research studies, to ensure your health and safety and also to provide data relevant to the aims of the study. Our studies may use data about ethnic origin, religious, philosophical or moral beliefs, or your sexual life or sexual orientation. All such data collection would be specified in the consent form and we would require your explicit consent for this. We will use medical information that you provide to us personally to prevent us contacting you about irrelevant research opportunities, if you are on the CHARIOT Register.

Do we need your consent?

We do not need your consent to process sensitive personal information if we use special categories of your personal information to monitor recruitment and comply with research studies’ requirements. In limited circumstances, we may approach you for your written consent to allow us to process certain particularly sensitive data. If we do so, we will provide you with full details of the information that we would like and the reason we need it, so that you can carefully consider whether you wish to consent. You should be aware that it is not a condition of your contract with us that you agree to any request for consent from us.

Data sharing

We may have to share your data with third parties, including third-party service providers and other entities in the College group.

We require third parties to respect the security of your data and to treat it in accordance with the law.

We may transfer your personal information outside the EU.

If we do, you can expect a similar degree of protection in respect of your personal information.

Why might you share my personal information with third parties?

We may share your personal information with third parties where required by law, where it is necessary to administer the relationship with you or where we have another legitimate interest in doing so. 

Which third-party service providers process my personal information?

"Third parties" includes third-party service providers (including contractors and designated agents) and other entities within the College group. The following activities are carried out by third-party service providers: Mailing and emailing services, we use Campaign Monitor and Docmail; Subject to signed informed consent explicitly detailing this: perform medical procedures as part of studies either within the NHS or private organisations; viewing study records while monitoring study data. 

How secure is my information with third-party service providers and other entities in our group?

All our third-party service providers and other entities in the College group are required to take appropriate security measures to protect your personal information in line with our policies. We do not allow our third-party service providers to use your personal data for their own purposes. We only permit them to process your personal data for specified purposes and in accordance with our instructions.

What about other third parties?

We may share your personal information with other third parties, for example in the context of the possible sale or restructuring of the business and operations of the College. We may also need to share your personal information with a regulator or to otherwise comply with the law.

Transferring information outside the EU

We may transfer the personal information we collect about you outside the European Economic Area as part of research activities, however, this will only ever be done if your explicit consent has been gained If your data is transferred outside the EU, to ensure that your personal information receives an adequate level of protection we will only ever share with third parties that are able to illustrate said level and agreements are in place to govern the data sharing and data processing that is consistent with and which respects the EU and UK laws on data protection.

Data security

We have put in place measures to protect the security of your information.

Third parties will only process your personal information on our instructions and where they have agreed to treat the information confidentially and to keep it secure.

We have put in place appropriate security measures to prevent your personal information from being accidentally lost, used or accessed in an unauthorised way, altered or disclosed. In addition, we limit access to your personal information to those employees, agents, contractors and other third parties who have a business need to know. They will only process your personal information on our instructions and they are subject to a duty of confidentiality.

We have put in place procedures to deal with any suspected data security breach and will notify you and any applicable regulator of a suspected breach where we are legally required to do so.

Data retention

How long will you use my information for?

We will only retain your personal information for as long as necessary to fulfil the purposes we collected it for, including for the purposes of satisfying any legal, accounting, or reporting requirements. Details of retention periods for different records the College holds are available in our retention policy which is available online . To determine the appropriate retention period for personal data, we consider the amount, nature, and sensitivity of the personal data, the potential risk of harm from unauthorised use or disclosure of your personal data, the purposes for which we process your personal data and whether we can achieve those purposes through other means, and the applicable legal requirements. In this case, we expect to store your personal information in the CHARIOT Register and study databases until (1) participant withdraws their consent, (2) the research team is notified of a participant's death, (3) we become aware that all contact details are no longer current and reasonable steps have been made to update them, or (4) the Register closes. In some circumstances we may anonymise your personal information so that it can no longer be associated with you, in which case we may use such information without further notice to you.

Rights of access, correction, erasure, and restriction

Your duty to inform us of changes

It is important that the personal information we hold about you is accurate and current. Please keep us informed if your personal information changes during your relationship with us.

Your rights in connection with personal information

Under certain circumstances, by law you have the right to:

• Request access to your personal information (commonly known as a "data subject access request"). This enables you to receive a copy of the personal information we hold about you and to check that we are lawfully processing it.
• Request correction of the personal information that we hold about you. This enables you to have any incomplete or inaccurate information we hold about you corrected.
• Request erasure of your personal information. This enables you to ask us to delete or remove personal information where there is no good reason for us continuing to process it. You also have the right to ask us to delete or remove your personal information where you have exercised your right to object to processing (see below).
• Object to processing of your personal information where we are relying on a legitimate interest (or those of a third party) and there is something about your particular situation which makes you want to object to processing on this ground. You also have the right to object where we are processing your personal information for direct marketing purposes.
• Request the restriction of processing of your personal information. This enables you to ask us to suspend the processing of personal information about you, for example if you want us to establish its accuracy or the reason for processing it.
• Request the transfer of your personal information to another party.

If you want to review, verify, correct or request erasure of your personal information, object to the processing of your personal data, or request that we transfer a copy of your personal information to another party, please contact the College’s Data Protection Officer in writing.

No fee usually required

You will not have to pay a fee to access your personal information (or to exercise any of the other rights). However, we may charge a reasonable fee if your request for access is clearly unfounded or excessive. Alternatively, we may refuse to comply with the request in such circumstances.

What we may need from you

We may need to request specific information from you to help us confirm your identity and ensure your right to access the information (or to exercise any of your other rights). This is another appropriate security measure to ensure that personal information is not disclosed to any person who has no right to receive it.

Right to withdraw consent

In the limited circumstances where you may have provided your consent to the collection, processing and transfer of your personal information for a specific purpose, you have the right to withdraw your consent for that specific processing at any time. To withdraw your consent, please contact the College’s Data Protection Officer. Once we have received notification that you have withdrawn your consent, we will no longer process your information for the purpose or purposes you originally agreed to, unless we have another legitimate basis for doing so in law.

Data Protection Officer

We have appointed a Data Protection Officer to oversee compliance with this privacy notice. If you have any questions about this privacy notice or how we handle your personal information, please contact the Data Protection Officer at:

Imperial College London
Data Protection Officer
Exhibition Road
Faculty Building Level 4
London SW7 2AZ

e-mail: dpo@imperial.ac.uk

You have the right to make a complaint at any time to the Information Commissioner's Office (ICO), the UK supervisory authority for data protection issues.

Changes to this privacy notice

We reserve the right to update this privacy notice at any time, and we will provide you with a new privacy notice when we make any substantial updates. We may also notify you in other ways from time to time about the processing of your personal information.