Doctor talking to boy about this medication

Share your experiences of children’s cancer care

Project title: Under 16s Cancer Patient Experience Survey
Lead researchers: Emily Boxell and Harriet Hay at Picker, on behalf of NHS England

What are we doing?
Picker, an independent health and social care research charity, has been instructed by NHS England, to develop a new Under 16s Cancer Patient Experience Survey to understand and improve experiences of children’s cancer care in England.
To help develop the survey, Picker is holding a series of discussion groups to collate information required by NHS England by exploring the views and experiences of children diagnosed with cancer and parents or carers of children diagnosed with cancer. We want to speak to the following groups:

  • Parents of children aged 0-15 years who are currently undergoing treatment for cancer or have received cancer care in England in the last 12 months, in the NHS.
  • Children aged 8-15 years who are currently undergoing treatment for cancer or have received cancer care in England in the last 12 months, in the NHS.

The discussion groups will last for up to 90 minutes and participants will be given a £30 gift voucher and up to £10 reimbursement for travel expenses as a thank you. Each group will consist of 6-8 participants and two researchers, who will facilitate the group. The discussion will be audio-recorded and responses typed up.

Do I have to take part?

  • No – participation is voluntary, it is up to you whether or not to take part.
  • You can decide not to take part at any time – even after it has started, without giving a reason.

Would my participation in this study be kept confidential?

  • Yes – your views will be kept entirely confidential. Care providers will not know who takes part.
  • No identifying information (such as your name, your child’s name, or the names of healthcare staff) will be recorded.
  • You will be asked to sign and complete a consent form that will be used only by researchers to confirm you have agreed to take part.

What will happen to the information that I share?
The information that you share will be used to inform the development of a new Under 16 Cancer Patient Experience Survey. The survey will be used by NHS England to understand and improve patient and parent/carer experiences of cancer care. The audio files will be password protected and only accessible to the project team.

NHS England and Picker comply with the General Data Protection Regulation (GDPR). 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.

All recordings from the discussion groups will be kept for six months, or until the research is complete. After this, the recordings are securely destroyed. Consent will be sought for contact details to be securely stored on file so they can be re-contacted about future stages of the research (e.g. for cognitive testing). Participants who agree to share this information will be advised that their information will be deleted within 2 weeks of completion of the development of the survey unless they request deletion sooner.

Who is organising the research?
The research is being organised by NHS England, an organisation that leads the National Health Service (NHS) in England. For more information about NHS England, please visit www.england.nhs.uk.

Contact Details
If you have any questions about the research, before or after the discussion group please do not hesitate to get in touch with the following contacts at Picker:

  • Emily Boxell, 01865 208156 (emily.boxell@surveycoordination.com)
  • Harriet Hay, 01856 208110 (harriet.hay@pickereurope.ac.uk)
  • Juan Abad Madroñero, 01865 208152 (juan.abad-madronero@pickereurope.ac.uk)

For more information or to take part:

  • Call Emily, Harriet or Juan at Picker on +44 (0) 800 1975273;
  • Or email us at take_part@PickerEurope.ac.uk stating ‘children’s cancer survey discussion group’ in your email.
  • To let us know you would like to take part and to check your eligibility, please complete our short online survey here: https://picker.fra1.qualtrics.com/jfe/form/SV_1NAilw2g3GMjbMx

Privacy Notice
NHS England’s Privacy Notice (https://www.england.nhs.uk/contact-us/privacy-notice/) describes how NHS England 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.

If you have any questions or concerns, please contact the NHS England Insight & Feedback team: england.insight-queries@nhs.net.

If you have any questions relating to data protection, please contact the NHS England’s Data Protection Office: england.dpo@nhs.net.

You have the right to make a complaint against NHS England regarding data protection issues with the Information Commissioner’s Office: https://ico.org.uk/concerns/.

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