PRIVACY NOTICE

On this page you'll find the privacy notice for the E-Cigarette Registry.

1. Introduction The E-Cigarette Registry (the Registry) respects your privacy and is committed to protecting your personal data.
 
Please read this Privacy Notice carefully – it describes why and how we collect and use personal data and provides information about your rights in accordance with Data Protection Act 2018 and other data protection legislation’.  It applies to personal data provided to us, both by individuals themselves and by third parties, and supplements the following wider KCL privacy notice(s):
 
General privacy notice
Statement on use of personal data in research
 
We keep this Privacy Notice under regular review. It was last updated in January 2022.
 

2. About us

The Registry is part of the Cancer Prevention Trials Unit (CPTU) within the School of Cancer and Pharmaceutical Sciences at Kings College London (KCL).
 
King’s College London is the entity that determines how and why your personal data is processed. This means that King’s College London is the ‘controller’ of your personal data for the purposes of data protection law.
 

3. Personal data that we collect 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).
 
Where we refer to processing, we will collect, use, store, retain and transfer following personal data about you:

• Your name
• Your email address
• Your postcode
• Your NHS number
• Your date of birth

 

4. How we use your personal data

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

• To access your health data  
• To send you communications by email e.g. information related to the study, study questionnaires, opportunities to take part in other research.

 
We do this only where you have specifically indicated that you consent to this privacy notice and to receive study communications.
 
Where the processing is based on your consent (where you have agreed to us contacting you for study purposes), you have the right to withdraw your consent at any time by contacting us using the details set out below. Please note that this will not affect the lawfulness of processing based on consent before its withdrawal.
 

5. Where we store your data

The data collected via our study questionnaires and from data registries is stored on our secure servers within the UK.
 

6. Who we share your personal data with

Your personal data will be collected and processed by King’s College London and Queen Mary University London. Access to your personal information is limited to staff who have a legitimate need to see it for the purpose of carrying out their job for the Registry.
 
 
We will have to share your personal data with the third parties set out below for the purposes outlined in section 4:
 

• Storage – AIMES Ltd, a company contracted by King’s College London to store data in robustly secure conditions.
• NHS Digital – In order to access your health data we need to send identifying data like your name, date of birth, postcode and NHS number to NHS Digital. This is so that they can locate your health data in their system. We will use the minimum data possible for this process.
• As we describe in our documentation, the onwards sharing of data is the main function of the Registry, as it is a resource for researchers. Researchers and organisations may apply to access the anonymous data. Access is not guaranteed to them and they must submit adequate documentation to prove that their research question is sound and that they have the appropriate facilities to store any data securely.

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

7. Lawful basis for processing

The Data Protection Legislation requires that we meet certain conditions before we can use your data in the manner described in this notice, including having a "lawful basis" for the processing. The basis for processing will be as follows:
 

• Public task (public health screening is part of the NHS’s public task) under the required GDPR special category conditions ‘research’. 

 

8. International transfers

 
We may transfer your personal data outside of the EEA.
 

9. Information security

We have put in place appropriate security measures to prevent your personal data from being accidentally lost, used, accessed in an unauthorised way, altered, or disclosed. We have established procedures to deal with any suspected personal data breach and will notify you and any applicable regulator of a breach where we are legally required to do so.
 

10. Data retention

We will only retain your personal data 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.
 

11. Your rights

Under certain circumstances, you may have the following rights under data protection legislation in relation to your personal data:

• Right to request access to your personal data;
• Right to request correction of your personal data;
• Right to request erasure of your personal data;
• Right to object to processing of your personal data;
• Right to request restriction of the processing your personal data;
• Right to request the transfer of your personal data; and
• Right to withdraw consent.

If you wish to exercise any of these rights, please contact us using the details set out below.
 
 

12. Contacting us
    You can contact the Registry by emailing ecregistry@kcl.ac.uk, by writing to: Cancer Research UK & King’s College London Cancer Prevention Trials Unit (CPTU), King's College London, Faculty of Life Sciences & Medicine, School of Cancer & Pharmaceutical Sciences, Cancer Prevention Group, GH0603004 Research Oncology Seminar Room, Floor 3, Bermondsey Wing, Guy’s Hospital, Great Maze Pond, London SE1 1UL.

 

13. Complaints

If you wish to complain about our use of personal data, please send an email with the details of your complaint to the Data Protection Officer so that we can look into the issue and respond to you.
 
You also have the right to lodge a complaint with the Information Commissioner's Office (ICO) (the UK data protection regulator). For further information on your rights and how to complain to the ICO, please refer to the ICO website.