Can you help us understand how people decide whether to take part in cancer screening?
About this project
Detecting cancer early through a screening programme could save your life. But a false result can lead to further tests and potentially even unnecessary treatment. How would you decide whether or not to do it?
In this project, we are interested in understanding how the public feel about cancer screening programmes. By asking the public to share their preferences on different cancer screening options, we hope to better understand the potential risks that people may be willing to accept for the benefits of cancer screening.
The project is being led by doctors and researchers at the University of Cambridge and the National Institute for Health and Care Research (NIHR) Cancer Awareness, Screening and Early Diagnosis Policy Research Unit.
What we’d like to know
- The research team are asking the public to share their views on cancer screening programmes and preferences on different screening options.
- Your views – whether you are someone who has experienced cancer screening or not – are crucial for understanding the harms that people may be willing to accept for the benefits of cancer screening.
- Your insights will help us to improve the way that information about screening programmes is shared and may help us improve the way cancer screening programmes are delivered.
Before you start
- To take part you need to be:
- A member of the public living in the UK
- Over the age of 18
- The survey will begin with several sections outlining current cancer screening approaches and more about this project. You will then be asked for your views on cancer screening and to share your preferences on different screening options.
- You will also be asked a little bit more about you, such as your age, ethnicity, your previous screening experience and whether you worry about cancer. You do not have to answer all of the questions if you do not want to.
- If you would like to receive a summary of the results or an invitation to take part in the next part of this project, we will ask you to provide us with your email address.
- If you would like to take a break, use the 'Next' button to save your answers. When you return use the same browser and device.
- We take confidentially and data protection seriously. Read more on how we manage your data. Please note that all responses will be stored in a publicly available online database at the end of the study (“open data”). The responses will be anonymous and you won’t be able to be identified. This practice is integral to the research process.
Want to know more?
Detailed participant information can be found in this participant information PDF.
Take part
This survey will take around 25-30 minutes (some people may need more time).
Close date: 1st December 2024
Confidentiality and data protection
Data security
- Your right to privacy is important to Thiscovery and to the project team.
Thiscovery takes the security of your information seriously and has policies and processes in place to ensure that your data is safe. - Our privacy policy describes the way we collect information, how we use it and how we protect it.
- For specific information about how information will be used in this project, please see below.
Who is responsible for collecting my information?
- We are collecting information about you on behalf of the University of Cambridge.
- Under data protection legislation, the University of Cambridge is the Controller responsible for the processing of your personal information to conduct the project. This means that they are responsible for making sure your personal information is kept secure, confidential and used only in the way you have been told it will be used.
- They are supported in this by us (THIS Labs), who are known as data processors for this project.
What information will you collect about me?
- To take part in this project THIS Labs will need to collect information that could identify you, called “personal identifiable information”. We will need to use the following information from you for this project:
- Your answers to questions; some of the information that you provide whilst answering questions might be considered as health data or other data that would be classed as Special Category data under the UK General Data Protection Regulation (UK GDPR).
- Optional information about socio-demographics, whether you have had cancer, and whether you worry about cancer.
- Your email address if you would like to be invited to the next stage of this project or receive a summary of the results.
What is your lawful basis for processing my personal information?
- We are collecting and storing this personal identifiable information in accordance with UK data protection laws which protect your rights. These state that we must have a lawful basis (specific reason) for collecting your data. The lawful basis for processing your personal information is decided by the University of Cambridge as Controllers for the data.
- For this project, the collection of the personal identifiable information is done on the basis of “a public interest task” and “a process necessary for research purposes”.
How will my personal information be looked after?
Your data will be looked after in the following way:
- If you opt to provide your email address, only THIS Labs will have access to this. We will only contact you with your permission to provide a summary of results and invite you to the next part of this project.
- We separate your email address (if provided) from any answers you provide as part of this project and store these securely in separate datasets, one containing contact details and one containing your project responses.
- This means that in the project dataset, instead of using your email to identify your responses, an ID number will be used instead. This is called pseudonymisation.
- The pseudonymised dataset is what the project team at the University of Cambridge will use for analysis. This dataset may contain other personal information as part of the answers you give to questions in the project, such as information about socio-demographic characteristics.
- Unfortunately, if you opt out of providing your email, you will not be able to withdraw from the project if you decide later you no longer wish to be involved, as we will be unable to identify your response.
- We take appropriate technical and organisational measures to ensure that we keep your information secure, accurate and up to date, and that we only keep it as long as is reasonable and necessary.
- Although we use appropriate security measures once we have received your personal information, the transmission of information when you submit it over the internet is never completely secure. We do our best to protect personal information, but we cannot guarantee the security of information transmitted to our website, so any transmission is at the user’s own risk.
- Information on how THIS Labs will process your personal information, and how to manage your Thiscovery account, is available on our privacy policy.
Will my personal information ever be shared?
- At the end of the study the anonymous data will be stored in an online database so that it is publicly available. This is called “open data”. This practice is integral to the research process as it will allow others to verify results and avoid duplicating research. Anonymised data are made available on a website, free of charge, to anyone interested in the research, or who wishes to conduct their own analysis of the data. We would therefore have no control over how these data are used.
- By anonymised, we mean that we will remove the ID number used to link your answers to your name, locate and remove any other identifying information (for example, names of NHS Trusts, place names), and any other indirect identifying information (such as specific details about health or experiences).
- We will never share personal information in any way not described in this participation information or in our privacy policy.
- However, occasionally information provided within a project may be useful to better understand how to conduct online research or to develop new approaches to analysing data.
- If you agree to take part in this project, we may use some of the information we gather from you to improve the methods we use on Thiscovery. If, to do so, we need to share information with external researchers or analysts, all information will be fully anonymised.
How long will my personal information and identifiable responses be held?
- THIS Labs and the University of Cambridge will not keep personal data longer than is necessary for the purpose or purposes for which they were collected. For this project, this means that once the project team have finished all analyses and produced all the outputs needed for the project, we will take all reasonable steps to destroy, or erase from our systems, all data that is no longer required.
What if I have a complaint or concern?
- For questions or concerns about anything to do with the project, please email Dr Rebecca Dennison at: rl423@cam.ac.uk.
- For technical problems or questions about the platform, please contact the Thiscovery team at help@thiscovery.org.
How can I find out more about how my personal data is used?
- The University of Cambridge’s privacy notice describes how they use personal data and explains how you can contact them. The University of Cambridge will protect your information in line with the requirements of the UK Data Protection Act 2018.
- Thiscovery's privacy notice describes how we use personal data; our full data protection and privacy policy can be found here.
Research team
This study will be led by the following team
Dr Rebecca Dennison
Research Associate
Department of Public Health and Primary Care, University of Cambridge
Dr Juliet Usher-Smith
Associate Professor of General Practice
Department of Public Health and Primary Care, University of Cambridge
Got a question?
If you have any questions, please contact Dr Rebecca Dennison by:
Email: rl423@cam.ac.uk
Telephone: 01223 748693
Post: Dr Rebecca Dennison
Department of Public Health and Primary Care
University of Cambridge
East Forvie Building
Cambridge, CB2 0SR
For help with any technical problems or questions about the platform, please email us at help@thiscovery.org.