Skip to main content

Privacy notice

The information within the Yorkshire Cancer Research Bowel Cancer Improvement Programme (YCRBCIP) is stored securely and used in a lawful and ethical way. This notice covers the data held by the YCRBCIP at the University of Leeds. It explains how we protect the privacy of individuals and comply with the principles of the EU 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 YCRBCIP?
  • What is our legal basis for holding/processing patient data (under GDPR)?
  • Who has access to patient data within the YCRBCIP?
  • 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 YCRBCIP?
The University of Leeds will collect information about you for this research study. This information will include your name, NHS number, date of birth, gender, contact details and health information, which is regarded as a special category of information. We will use this information to provide the correct questionnaires to study participants and to request tissue blocks and information from your medical records from the hospital who have treated you for your bowel cancer.

We hold the answers to the questionnaires you have completed as part of the study but this data is held separately under a study identifier.

In addition, we also receive routine healthcare data, data which cannot directly identify you, generated by the detection and treatment of bowel cancer from the National Cancer Registration and Analysis Service.  We use this information for research aimed at improving outcomes for patients with bowel cancer in the Yorkshire and Humber region.

The University of Leeds is the sponsor for this study based in the United Kingdom. We will be using information from you and your medical records in order to undertake this study and will act as the data controller for this study. This means that we are responsible for looking after your information and using it properly. The University of Leeds will keep identifiable information about you for five years after the study has finished.

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 withdraw from the study, we will keep the information about you that we have already obtained. 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)?
The University of Leeds is a reputable institution with a research function as laid down in its Charter (II.6). Our legal basis under GDPR is “…a task carried out in the public interest or in the exercise of official authority vested in the controller” (Article 6(1)(e)). For processing special categories of personal data, such as health information, Article 9(2)(j) applies, since “processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1)…”. Technical and organisational safeguards are in place to keep the data secure. Our funding from Yorkshire Cancer Research involved peer review and we have received a positive ethical opinion from the West Midlands – Solihull Research Ethics Committee (17/WM/0374) both of which provide reassurance that the research is in the public interest.

Who has access to data within YCRBCIP?
Study sites in the NHS will use your name, NHS number and contact details to contact you about the research study, and make sure that relevant information about the study is recorded for your care, and to oversee the quality of the study. Individuals from the University of Leeds and regulatory organisations may look at your medical and research records to check the accuracy of the research study. NHS sites will pass these details to the University of Leeds along with the information collected from you and/or your medical records. The only people in the University of Leeds who will have access to information that identifies you will be people who need to contact you to send out the study questionnaires, request tissue blocks, request data from your medical records, or audit the data collection process. The people who analyse the information will not be able to identify you and will not be able to find out your name, NHS number or contact details.

The University of Leeds will collect information about you for this research study from the National Cancer Registry and Analysis Service. This information will include some of your health information, which is regarded as a special category of information. We will use this information to fully analyse and interpret the results of the study.

Some personal information collected during the study is transferred to the National Cancer and Analysis Service who have approvals to work with cancer patient data.  In order to fully analyse and interpret the results of the study, the information you give will be linked to other information held about you in existing NHS databases.  Your personal information and survey responses will be stored as part of the patient cancer record by the National Cancer Registry and Analysis Service under strict data handling rules for patient identifiable information.

For information about adult cancer registration please visit www.ndrs.nhs.uk

All data is stored and analysed in a secure environment that complies with NHS Digital’s Data Security and Protection Toolkit.

How long will the data be retained?
The Leeds research team will keep your data securely for five years after the end of the study.  This will enable us to follow-up outcomes using data that that is routinely collected as part of your NHS care.  The current study end date is 30 September 2025.

When you agree to take part in a research study, the information about your health and care may be provided to researchers running other research studies in this organisation and in other organisations. These organisations may be universities, NHS organisations or companies involved in health and care research in this country or abroad. Your information will only be used by organisations and researchers to conduct research in accordance with the UK Policy Framework for Health and Social Care Research.

Your information could be used for research in any aspect of health or care, and could be combined with information about you from other sources held by researchers, the NHS or government.

Where this information could identify you, the information will be held securely with strict arrangements about who can access the information. The information will only be used for the purpose of health and care research, or to contact you about future opportunities to participate in research. It will not be used to make decisions about future services available to you, such as insurance.

Where there is a risk that you can be identified your data will only be used in research that has been independently reviewed by an ethics committee.

 Who should I contact if I have any questions?
You can find out more about how we use you data by contacting our Project Manager, Hannah Rossington H.L.Rossington@leeds.ac.uk

Yorkshire Cancer Research Bowel Cancer Improvement Programme, LIDA, 11th Floor Worsley Building, University of Leeds, LS2 9NL

0113 3430337

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 the University Data Protection Officer:

David Wardle (d.wardle@adm.leeds.ac.uk)
University of Leeds, Room 11.72, EC Stoner Building, Leeds LS2 9JT

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
Please note that we may change this notice by updating this page. If we make substantial changes we will highlight them via our website news.

Last updated 11/04/2022