Privacy Notice
The Yorkshire Lung Screening Trial (YLST) is a randomised controlled trial to evaluate invitation to community-based low dose computed tomography (LDCT) screening for lung cancer versus usual care in a targeted population at risk.
The primary objectives of the study are:
- To measure participation rates of a community-based lung cancer screening programme.
- Comparing the performance of different criteria to identify individuals at high risk of lung cancer for LDCT screening.
- To assess the clinical outcomes of invitation to targeted community-based LDCT screening for lung cancer versus usual care (no invitation).
The information within the YLST is stored securely and used in a lawful and ethical way. This notice covers the data held by the YLST at the University of Leeds and the Leeds Teaching Hospital NHS Trust (LTHT). It explains how we protect the privacy of individuals and comply with the principles of the UK General Data Protection Regulation (GDPR) and the UK Data Protection Act (DPA) 2018.
This notice answers these questions:
- What data do we hold as part of the YLST?
- What is our legal basis for holding/processing patient data (under GDPR)?
- Who has access to patient data within the YLST?
- How long will the data be retained?
- Who should I contact if I have any questions?
- Where can I learn more about my rights under the DPA 2018 and GDPR?
What data do we hold as part of the YLST?
Participant details were obtained from GPs in Leeds for people who had ever smoked. These people were then split into two groups for the research study – an intervention group who were invited for a risk assessment for lung cancer and CT scan for those at high risk of the disease, and a control group who were not contacted.
Completed questionnaires and CT scan results for people in the intervention group are held on the LTHT Electronic Patients Record system along with the participants’ other medical records.
Data about all participants (in the intervention and control groups) collected by the YLST is held in a secure Virtual Research Environment (VRE) at the University of Leeds that complies with NHS Digital’s Data Security and Protection Toolkit.
In addition, we also receive lung cancer and mortality data from NHS England and the National Cancer Registration and Analysis Service. This is stored in the same secure University of Leeds VRE. This is required so that we can evaluate how effective the YLST has been at detecting lung cancer.
The University of Leeds is the sponsor for this study and the University of Leeds and the Leeds Teaching Hospital NHS Trust are joint data controllers for the YLST and will be using information from you and your medical records in order to undertake this trial.
Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you consented to take part in YLST, you can withdraw from the study at any time by contacting the YLST team (leedslunghealthcheck@nhs.net, 0113 392 6688).
When YLST first identified participants from GP records, the study team widely publicised the study to let people in Leeds know that their data might be used without their consent. Dissent information (which explained what was being planned for data analysis, and mechanisms to opt out of data being used) was published in the Yorkshire Evening Post and displayed on posters in 86 GP surgeries in Leeds and all nearby pharmacies. People wishing for their data not to be used in this way were and are advised to contact the YLST team (leedslunghealthcheck@nhs.net, 0113 392 6688).
For anyone who asks for their data to be deleted, we will follow that instruction, but we will not be able to delete your data from aggregated data already published in papers. To safeguard your rights, we will use the minimum personally-identifiable information possible.
What is our legal basis for holding/processing patient data (under GDPR)?
Our legal basis for using your information, under GDPR and the Data Protection Act 2018, is:
1) performance of a task carried out in the public interest (Article 6(1)(e) in the GDPR); and, where sensitive personal information is involved:
2) scientific or historical research purposes or statistical purposes (Article 9(2)(j) in accordance with Article 89(1)).
Our funding from Yorkshire Cancer Research involved peer review and we have received a positive ethical opinion from Greater Manchester West research ethics committee (18-NW-0012) both of which provide reassurance that the research is in the public interest.
As part of YLST, we are holding/processing data for people who have not provided consent for this. This is a vital part of the study design as the overall aim was to see what happens to people who undergo lung cancer screening and those who do not (either because they didn’t wish to do this, or because they were not invited in the first place). We have permission for this under Section 251 of the NHS Act 2006. This enables the common law duty of confidentiality to be lifted to enable disclosure of confidential patient information for medical purposes where seeking consent was not practical.
Approval to use Section 251 is given by the Confidentiality Advisory Group (CAG). For further information about CAG and Section 251 please visit the Health Research Authority website.
https://www.hra.nhs.uk/about-us/committees-and-services/confidentiality-advisory-group/
Who has access to data within the YLST?
Information collected and stored on the LTHT Electronic Patients Record System will be stored alongside your medical records and access will be the same as your existing records. Information relating to the day-to-day operation of YLST will only be accessible by the YLST team.
Data in the University of Leeds VRE will be accessible by a subset of the YLST team involved in the analysis of the results, for example Statisticians and Health Economists, who will not be able to identify you and will not be able to find out your name, address or contact details.
In addition, people who consented to be part of YLST provided consent to us sharing anonymous data with other research groups. These organisations may be universities, NHS organisations or companies involved in health and care research in this country or abroad. However, we will only share anonymous data with these groups which means that no one will be able to reidentify you from this data.
How long will the data be retained?
The University of Leeds and Leeds Teaching Hospitals will keep identifiable information about you until Oct 2034. All data stored as part of YLST will be deleted from the University of Leeds and Leeds Teaching Hospitals at that time apart from data held within the Leeds Teaching Hospitals Electronic Patient Record about clinical care. Being able to keep data for this period will maximise the research value of the data, for example to allow follow-up cancer outcomes for several years.
Who should I contact if I have any questions?
You can find out more about how we use you data by contacting our Project Co-ordinator, Harriet Beal (h.e.beal@leeds.ac.uk) Yorkshire Lung Screening Trial, LIHS, 10th Floor Worsley Building, University of Leeds, LS2 9NL.
Day to day operational questions (for example opting out) can be directed to the YLST team: leedslunghealthcheck@nhs.net
Where can I learn more about my rights under the DPA 2018 and GDPR?
The Information Commissioner’s Office website provides information on your rights.
If you are concerned about the way your personal data may have been processed, you can contact:
University of Leeds Data Protection Officer:
Rebecca Messenger-Clark
University of Leeds, Secretariat, Leeds LS2 9JT
Leeds Teaching Hospitals NHS Trust Data Protection Officer:
Johnny Chagger
Trust Headquarters, Beckett Street, Leeds, LS9 7TF
You can also complain to the ICO if you are unhappy with how we have used your data.
The ICO’s address:
Information Commissioner’s Office, Wycliffe House, Water Lane, Wilmslow, Cheshire,
SK9 5AF
Helpline number: 0303 123 1113
Changes to this notice
Last updated 15/07/2024
