Skip to main content
What types of page to search?

Popular pages: Undergraduate Postgraduate PhD Accommodation Research International students

Alternatively use our A-Z index.

Privacy notice

It is important that, as a potential participant, you understand what data we hold about you, where it comes from and why we need it.

The University of Liverpool is the Sponsor of the P4-LHC research and is responsible for data held by the study: “we” refers to the University of Liverpool.

All the data we hold about you has come from the NHS Targeted Lung Health Check at Liverpool Heart and Chest Hospital NHS Foundation Trust.

Name and address were supplied, so that we could ask you to participate (but only name is retained and where we need it to record your consent and no identifiable data is held for anyone who did not consent). This was allowed due to ‘section 251 support’ from Health Research Authority on advice from the Confidentiality Advisory Group, and on the basis that this research is in the public interest.

If you consent to take part is important you understand what additional data we will hold about you, where it comes from and why we need it.

As a participant you will give us your informed consent before taking part in our study, allowing us to be provided with further information about you from the NHS Targeted Lung Health Check at the Liverpool Heart and Chest Hospital. You will also have sent us a sample or urine.

As explained to you when you were recruited, you have the right to withdraw at any time. Whilst we hope that you will not withdraw, we will do our best to make sure that it is easy to do so. Simply contact us by telephone on +44 (0)151 600 1876, e-mail Research.LHCH@lhch.nhs.uk or write to us at 

P4-LHC c/o Liverpool University Biobank Manager
William Henry Duncan Building (3rd Floor Cancer Medicine)
6 West Derby Street
Liverpool, L7 8TX
United Kingdom.

Some of the data we collect was provided by you as part of Targeted Lung Health Check participation, including risk factors (such as age, sex, history of lung disease and cancer, history of smoking, family history of lung cancer, exposure to asbestos). These help us understand what your risk of lung disease might be.

For our research we also need to know if you received a low-dose CT scan to help identity lung disease, including cancer, and what the outcome was. We can use this to help find better ways of detecting lung disease.

We get this data from the NHS Targeted Lung Health Check and store it securely in the Liverpool University Biobank (LUB). However, this sensitive data is analysed without the researchers being able to identify you.

How do we handle (or process) your data?

  • We store the data securely and only share it anonymously with approved researchers (none of whom would be able to personally identify you from the data)
  • Only data which is important for our research and helps us address our aims will be collected
  • How we access the data is governed by strict guidance – part of which is to make sure you are aware of your right to withdraw from the research at any time
  • All our research is ethically approved
  • None of your data is used for automated decision making.

The University of Liverpool is the Data Controller for this data and have policies and procedures in place to ensure that it is kept securely and processed in keeping with your wishes and with the necessary regulation, such as the UK General Data Protection Regulation (GDPR) and Data Protection Act. Informed consent is still important to meet our common law duty of confidentiality and is still needed to access and use confidential patient information for research.

Who will own my data once I’m consented?

Data will be collected and owned by the University of Liverpool and held by the Liverpool University Biobank (LUB).

You can stop being part of the study at any time, without giving a reason, but we will keep information about you that we already have. 

We need to manage your records in specific ways for the research to be reliable. This means that we will not be able to let you see or change the data we hold about you. 

What allows you to use my data/Information?

Permission to contact you using your name and address provided by the NHS was granted by the Health Research Authority Confidentiality Advisory Group, as part of ethical approval. You will have then consented to participate in the P4-LHC research study and for your personal and healthcare data to be held by the Liverpool University Biobank, as described above. Your consent may be withdrawn at any time by contacting the Liverpool University Biobank Manager.

Who will my data be shared with?

All information that is collected will be held in accordance with data protection laws in the UK. Only a small number of biobank staff who are professionally bound to maintain your privacy, would have access to demographic data identifying you personally. This information will be stored securely and your name, address and other personal information will not be provided to researchers using your samples. You will not be able to be identified by the researcher. All your data/information is anonymised before being released to researchers. We will ensure that your personal data will not be disclosed to other organisations, institutions and authorities unless required by law.

Do I have to provide this information and what will happen if I don’t?

No one is required to provide their data to be used by the biobank, however, without the accompanying data the samples that you have donated will not be of use to researchers. All information will be treated with the strictest confidence and held securely. This information is essential to help researchers investigate new ways to diagnose disease.

What rights do I have when it comes to my data?

Under the General Data Protection Regulation, you may have the following rights with regards to your personal data:

  • The Right to subject access – you have the right to see a copy of the personal data that the University holds about you and find out what it is used for
  • The Right to rectification – you have the right to ask the University to correct or remove any inaccurate data that we hold about you
  • The Right to erasure (right to be forgotten) you have the right to ask the University to remove data that we hold about you
  • The Right to restriction – you have the right to ask for your information to be restricted (locked down) on University systems
  • The Right to data portability – you have the right to ask for your data to be transferred back to you or to a new provider at your request
  • The Right to object – you have the right to ask the University to stop using your personal data or to stop sending you marketing information, or complain about how your data is used
  • The Right to prevent automated decision making – you have the right to ask the University to stop using your data to make automated decisions about you or to stop profiling your behaviour (where applicable).

Please note that not all rights apply in all situations. To find out more about your rights under the GDPR, please visit the Information Commissioner’s website www.ico.org.uk.

The patient leaflet about the use of confidential data in research provides more technical information about:

  • The legal basis for processing
  • Who will receive the data (outside of international transfers)
  • More information about participants' rights.

To request a copy of your data or ask questions about how it is used, contact:

The University of Liverpool Data Protection Officer, Legal & Governance,
University of Liverpool, Foundation Building, 765 Brownlow Hill,
Liverpool L69 7ZX.

Email: legal@liverpool.ac.uk

Who can I complain to if I am unhappy about how my data is used?

You can complain directly to the University’s Data Protection Team by writing to The University of Liverpool Data Protection Officer (email and address as above).

You also have the right to complain to the Information Commissioner’s Office:

The Information Commissioner's Office,
Wycliffe House, Water Lane, Wilmslow, Cheshire SK9 5AF
Telephone: 0303123113
Website: www.ico.org.uk

How can I find out about the research that has been performed using my samples and data?

Because of the way we use your data anonymously and because this is purely research data, we are unable to share with you exactly what the results are relating specifically to you, or which studies your samples and data have been used in.

Our research is published in medical journals and at scientific meetings, for a scientific audience and may not be available to you, other than as a short summary (an abstract). However, you can find out about the work that the Liverpool Lung Project performs on our Liverpool Lung Project website (liverpoollungproject.org.uk), our University website  Lung Cancer Research - Institute of Systems, Molecular and Integrative Biology - University of Liverpool, and through local and national media. If you have any questions about our research, you can contact us using the contact details above.