Quit Sense – Privacy notice

Privacy notice owner: The University of East Anglia, School of Public Health, Quit Sense study. Version 1.0, dated 30/01/2020.

Who this notice applies to

This notice is most directly relevant to participants in the Quit Sense study.

What the study is about and who is doing the research

The Quit Sense study aims to estimate the effectiveness of two forms of digital support (website and app) designed to help smokers to quit and to continue resisting cravings. The study also aims to assess the feasibility of providing this support, of evaluating it online and of running a full-scale randomised control trial in future. We are looking for 160 cigarette smokers who are willing to quit within 14 days of volunteering to take part.

The study is being conducted by researchers from the University of East Anglia (UEA), the University of Cambridge, the University of Nottingham and Imperial College London.

The information we collect about you and how we will use it

We collect the following types of information: personal contact details (e.g., cell phone number, home address) so that we can keep in touch with you about the study; some demographic details (e.g., age range, sex, job type) to tailor messages and also to provide information about our participant sample; surveys (e.g. questions about smoking habits and how you rate your health); GPS location data (if you are offered and choose to use the Quit Sense app), telephone interviews collecting your views on the study and app if you have it (if you are invited and choose to participate); audio recordings of your feedback on the app and study (if you have the app and choose to provide feedback), a saliva sample (if you report having quit and choose to provide a sample).

Personal information about you will be kept confidential (i.e., private) and stored safely and securely. Data from the Quit Sense app will be temporarily stored by the University of Cambridge before being securely transferred to the University of East Anglia for processing, analysis and storage. All other data will also be securely managed and stored by the University of East Anglia.

Our purpose and legal basis for processing your data

Our purpose for using your personal data is so we can enrol you onto the Quit Sense study, enabling you to take part and quit smoking as described above. We will not use your data for any other purpose.

The legal basis we rely on to process your personal data is article 6(1)(e) of the GDPR. This allows us to process personal data when this is necessary to perform our public tasks as a University.

Where we process information about you that is classed as sensitive, or special category data we also need to identify a further lawful basis in order to handle this type of information which is article 9(j) of the GDPR, “the processing is necessary for…scientific or historical research purposes or statistical purposes…”

Where our information comes from

The information we hold is provided by you.

Sharing information and research findings

1. The mobile telephone number you provide will be used by the specialist team at the University of East Anglia as part of study administration. In order to send you study-related text messages, we need to pass your number to our text message provider (Twilio). Your telephone number will be kept confidential and will only be used for this study. It won’t be passed on to or used by anyone else.

2. In addition to the University of East Anglia, the following organisations who collaborate with us on this project will have access to the research data: The University of Cambridge, The University of Nottingham and Imperial College London.

3. In accordance with the University of East Anglia, the Government, and our funders’ policies we may share our research data with researchers in other Universities and organisations, including those in other countries, for research in health and social care. Sharing research data is important to allow peer scrutiny, re-use (and therefore avoiding duplication of research) and to understand the bigger picture in particular areas of research. Location data collected by the app, however, will not be made available as part of an anonymised open data set outside of Quit Sense collaborations.

4. When sharing our findings, we may use direct quotes (e.g., from your feedback or interviews) but these would not be linked to you. Your name will not be used.

How long we keep your information

We will keep your information for the lengths of time specified in the participant information sheet. Personal / contact details will be stored for 12 months in order that we can send you a copy of the study findings if you request one, after which this data will be destroyed. Research data will be kept for 20 years before being destroyed but it will be anonymised.

Your rights

UK data protection law gives people a wider range of rights in relation to their personal data. Some of these rights won't apply in all circumstances, but they do give you a good deal of control over how your information is used by organisations such as UEA. Please refer to the UEA website for further information here.

Concerns and complaints

Please refer to the UEA website here.

Website statement

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Concerns and complaints

Please refer to the UEA website here.

Further information

The University of Cambridge is a data processor. The University of East Anglia is the Data Controller. This means that UEA determines why and how personal data will be collected and used, either alone, or jointly with others. UEA’s handling of personal data is regulated by the Information Commissioner’s Office (ICO). Our registration number is Z8964916. See our ICO register entry. See UEA’s further information page here.

The Chief Investigator of this study (Dr Felix Naughton) is the Data Custodian (manages access to the data). This means we are responsible for looking after your information and using it properly. To safeguard your rights, we will use the minimum personally – identifiable information possible. Your data may be looked at by authorised people from regulatory organisations to check that the study is being carried out correctly. All these people will have the duty of confidentiality to you as a research participant and we will do our best to meet this duty.

You can see the Quit Sense app privacy page.

All research in the NHS is looked at by an independent group, called a Research Ethics Committee, to protect your interests. This study was approved on the 28th of January 2020 (Wales REC 7, reference 19/WA/0361, IRAS project ID 270432).

Changes to this privacy notice

This privacy notice last updated on 30/01/2020.

How to contact the University's data protection team

See UEA’s further information page here.