Liverpool Lung Project Participants Page

Thank-you for being part of our research into the causes of lung cancer.

Without the continued support of our participants, we would not be able to perform studies that aim to:
• determine factors associated with the risk of lung cancer (to help identify ways to select people for future screening);
• identify better ways to detect lung cancer earlier, leading to earlier diagnosis;
• identify ways of selecting patients for the best current and future treatment;
• contribute to improving patients' outcome and ultimately save lives.

For any enquiries relating to participation in LLP contact:
Mrs Janet Farley:  Tel 0151 794 9107
Mrs Gaynor Hunt:  Tel 0151 794 9115

It is important that as a participant you understand:
• what data we hold about you & where it comes from;
• 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);
• the only data collected is that which is an important part of our research and helps us address our aims;
• 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.

Exactly how we handle data we keep about you as part of our research at the University of Liverpool is fully explained and outlined within our Fair Processing Statement. A copy of this statement is available for your information HERE.
The information in the statement informs you in legal language what you can expect from us when you entrust us with information about yourself. It explains to you, the participant, what our obligations are to you in order to protect your information and identity when conducting our research. We have explained some of this in simpler terms in the Frequently Asked Questions sections below.

As a participant you will have given us your informed consent before taking part in our study and provided information (e.g. completed a questionnaire) and /or samples (e.g. blood, sputum). You will have been provided with a patient information sheet specific to your consent form at the time of recruitment. Should you at any time have any questions about the study, or wish to view any of the information or documents in relation to your own recruitment/agreement to take part, please do so either by contacting one of the individuals listed above or in writing to the address below.

Frequently Asked Questions:

What data do you collect about me, where from and why do you need it?
Some of the data we collect is provided by you in the form of a questionnaire, including your name, address and contact details – these are important so that, if necessary, we can contact you.
The questionnaire also asks questions about your medical history (e.g. if you have had any lung diseases or if anyone in your family has had cancer) and environmental factors (including smoking) – these are important because they may be risk factors for lung cancer.
If you have specifically consented to us having access to your medical records, we also collect data about you that specifically relates to our research goals.
This data may come from the Health and Social Care Information Centre (HSCIC; ), which provides us with further details of diseases that you may also have suffered from, that may have an impact on our research. This may include hospital admissions data, Cancer Registry data and data from the Office for National Statistics (ONS). For example, this may include data from:
• your medical notes (e.g. if you were recruited whilst attending hospital for lung cancer diagnosis or treatment) and tell us about the results of hospital tests, the type of lung cancer you have and any treatment you receive.
• Cancer Registries, which provide us with details of any cancer you might suffer after joining our study. This is important information because it allows us to help find new ways of predicting lung cancer – using the data and samples you have provided.
• the Office of National Statistics (ONS), which provides information of dates and causes of death (mortality data) – this is important because we are very interested in what happens to you after you have been recruited into our study. Knowing when participants have died is important, as it allows us to try and determine which lung cancers are most deadly, or which treatments most effective.

Is my information kept securely?
Yes, the information and samples you provide are treated confidentially and stored securely by the University of Liverpool. Data is held on a secure data server at the University of Liverpool, is password protected and only available to approved, trained staff who are aware of all the rules (and laws) about confidentiality and data protection. By keeping it safe in this way, we not only protect our participants, but also ensure our research is of the highest scientific and ethical standards.

Do you share it with anyone?
Sharing results and data is an important part of scientific research, ensuring that the best minds have access to the best resources to tackle the important questions and that our research can be judged fairly and used confidently to change the way that we detect and treat cancer. However, in sharing data we never identify individuals. All data used in research by us and our international collaborators, or published in scientific journals, is anonymous. Before releasing data for sharing, we remove any identifier that might be used to identify our participants. We never release data to third parties who might try to contact you and those researchers who we do release anonymous data to are required to sign a legal contract that ensures they abide by the same high standards.
It may be beneficial to work with a commercial company to develop new medical tests or treatments. We may therefore wish to share some of the samples or some of the information with other researchers working for such a company. If we do so the sample will be anonymous and no personal information about you will be disclosed. If eventually this research leads to any new treatment or medical test you will not benefit financially. If you wish you can opt out of use of your data and samples by commercial companies, which will have no impact on your current treatment.

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. However, you can find out about the work that the Liverpool Lung Project performs on our News page of this website, through local and national media and through our main funding body the Roy Castle Lung Cancer Foundation.

How do I withdraw from the study & what will happened to my samples and data?
We very much hope that you will continue to participate in our research and let us use your samples and data. However, as explained to you when you were recruited, you have the right to withdraw at any time and we will do our best to make sure that it is easy to do so.
If at any stage you do feel you want to withdraw from the study, please contact us by telephone or e-mail (as above) or write to us at the address below:
Liverpool Lung Project
Institute of Translational Medicine,
University of Liverpool,
Apex Building, 3rd floor,
6 West Derby Street,
Liverpool, L7 8TX.

We will be happy to explain the simple procedure and provide a pro-forma letter which contains a list of intended withdrawal options, to allow you to clearly state your wishes.



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