Share your experiences of cancer treatment and care 

Project title: National Cancer Patient Experience Survey 2025 
Lead researcher: Caroline Hancock at Picker, on behalf of NHS England (NHSE)

Thank you for your interest in taking part in an interview to discuss the National Cancer Patient Experience Survey. Before you decide whether to take part, it is important you understand why the research is being carried out and what it will involve. Please take your time to read the following information. Please ask the research team at Picker if you have any questions or would like further information.

Who is organising the research? 

The research is being carried out by Picker, an independent not for profit research organisation. Picker runs the National Cancer Patient Experience Survey acting as a ‘data processor’ on behalf of NHS England (the ‘data controller’).

What are we doing in this research study?

The survey has been implemented thirteen times since 2010 and is used by NHS England, and hospitals, to understand where care is working well and how NHS cancer services across England can be improved. We want to test the questionnaire and materials for the 2025 survey to ensure it makes sense and is clearly understood by patients completing it. 

Who can take part?

We are looking for participants aged 16 or above who have a confirmed primary diagnosis of cancer and have received cancer-related treatment from the NHS within the last year.  

What will happen if I take part?

If you agree to take part, we will schedule a convenient time for you to speak with a researcher from Picker to go over the questionnaire and materials to provide your feedback. The interview will be conducted via video call using an online video/audio conferencing software (e.g. Microsoft Teams), over the telephone or in person (we will ask you which method you would prefer).

We will send you a copy of the questionnaire and materials along with a consent form for you to sign beforehand. The researcher will ask some questions to understand your thoughts about the questionnaire and materials. For example, they may ask if you found any wording confusing, what your thoughts are about the terms used, and how you found the design of the materials. Your feedback and comments will be recorded to help us improve the survey. With your consent, Picker will record this interview and use this recording for analysis purposes only. The recording will be done through Microsoft Teams and stored within the European Union. 

The interview should take about 60 minutes to complete. Once the interview is complete, you will be given a £50 Amazon or Love2Shop voucher as a thank you for your time.

Do I have to take part?

No, participation is voluntary. It is up to you whether you wish to take part.  

You can decide not to take part and withdraw at any time – even after the interview has started, without giving a reason. 

If you decide not to take part, this will not affect the care you receive in any way. Your care providers will not know who has taken part. 

Your privacy

• All information provided by you through the research will be treated confidentially and securely, in accordance with this Privacy Notice.
• The feedback you provide will be looked at in full by the researchers analysing the data. No identifying information (such as names) will be shared with anyone other than the research team at Picker involved in this project.  Picker will report views anonymously, ensuring no one can link your comments to you (including any quotes used in the report).
• What you say about the survey approach will not affect your healthcare or rights to healthcare in any way.
• We ask for consent to record the interview for transcription purposes. Given the nature of the recording functionality on Microsoft Teams, if you do not consent to be video recorded, but are happy to have the audio recorded, we will ask that you switch your camera off for the interview.
• You will be asked to complete a consent form online that will be used only by researchers to confirm you have agreed to take part.
• Picker will use your personal data and responses solely for the purposes of this research.

How your personal data will be kept secure 

All your personal data used and collected for this survey will be stored and processed in the United Kingdom.

NHS England and Picker comply with the UK General Data Protection Regulation (UK GDPR) and Data Protection Act 2018. NHSE are data controller & Picker are acting as data processor on behalf of NHSE. NHS England’s Privacy Notice (https://www.england.nhs.uk/contact-us/privacy-notice/) describes how we use personal data and explains how you can contact us and invoke your rights as a data subject. Picker also complies with the Market Research Society’s (MRS) Code of Conduct by maintaining certifications from the International Standardisation of Organisations. Any sensitive or confidential material is stored securely in line with our data protection policy.

Your personal details (name and contact information), as well as the interview recording, will be kept securely and destroyed on completion of the research. Your information will be stored in line with NHS England’s retention schedule, which can be accessed here: NHS England » Corporate records retention and disposal schedule.

Personal data will be stored within the EU, where relevant adequacy regulations under section 17A of the 2018 Act apply.

How long will your personal data be retained for?

Picker will retain your personal contact data for two months following the completion of the project and retain any qualitative records for 12 months following the completion of the project.

If you are invited to take part online, your email address, collected for the purpose of inviting you to take part in a Microsoft Teams call and for the Picker Interviewer to share their screen, will be deleted within 48 hours of taking part in the interview, after deletion your email address from Outlook, it will be permanently removed from Microsoft servers within 31 days (please note this is separate to any personal data that might be collected within the survey itself – see bullet point above).

NHS England Privacy Notice and information

NHS England’s Privacy Notice (https://www.england.nhs.uk/contact-us/privacy-notice/) describes how we use personal data and explains how you can contact us and invoke your rights as a data subject. We will process your information in accordance with the requirements of the Data Protection Act 2018.

We are collecting / processing personal data about you for the following purpose(s):

• To be able to contact you prior to interview
• To inform the demographic sample of our research

The information we will collect includes:

• Your contact details (name, email address and contact telephone number)
• Information about your health (related to your experience of cancer)
• Your demographic data such as gender, age, ethnicity

The legal bases for this processing are:

• Where we process your personal data, we use Article 6(1)(e): exercise of official authority
• Where we process special categories of your personal data, including data concerning your health, we use 9(2)(h): management of a health or social care service

We collect your personal data for this purpose from:

• The information you provide us with during the interview

Your personal data is received and used by:

• Picker acting as a data processor on behalf of NHS England

Your rights

• You have the right to access your personal data within the limited period that Picker holds it.
• Providing responses to this study is entirely voluntary and is done with your consent. You have the right to withdraw your consent at any time.
• You also have the right to rectify any incorrect or out-of-date personal data about you which we may hold.
• You have the right to lodge a complaint with the UK’s Information Commissioner’s Office (ICO), if you have concerns on how we have processed your personal data. You can find details about how to contact the Information Commissioner’s Office at https://ico.org.uk/global/contact-us/ or by sending an email to: casework@ico.org.uk. 

Requests to access your personal data or invoke your other rights under the Data Protection Act 2018 may be made in writing to NHS England or by speaking to Picker, in which case they will log the request and pass it on to NHS England. All requests will be recorded, and you may need to provide information to verify your identity and enable us to locate the information, including:

• Full name, email address and organisation name
• An indication of what information you are requesting to enable us to locate this in an efficient manner

For requests in relation to your personal data held by NHS England, please contact england.dpo@nhs.net

Ready to take part?

If you would like to register your interest in taking part, please complete the following form by clicking the button below:

You will be asked questions about your demographic, your cancer diagnosis and treatment, and your availability. A researcher will follow-up with you afterwards on next steps.

Contact details

If you would like further information on the project, please contact Picker, by either email or telephone: 

Email: CPES@pickereurope.ac.uk 

Phone: +44 (0) 1865648271